Calling all triple negative breast cancer patients in the UK
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Hi, Susie
Yes, I suppose usually you don't need AC since this is unusual heat for you. For us the high heat is normal in the summer, but this year the heat and humidity started a little earlier than usual, spring was short-lived. Yesterday I was out in it again for a few hours, and I can feel it today, I am a bit wrung-out, if that's a word.
I am familiar with a PICC line, my husband had to have one after his knee surgery site got infected, and we had to administer at-home IV antibiotics. A Home Health nurse came by to show us how the equipment worked the first night, and the next night we did it alone, it took too many hours for the medicine to drip. I called a nurse I knew the next day, she came by and I went over the routine with her. The HH Nurse had forgotten to show me one step in the process that controlled the flow of the meds so what should have taken maybe an hour the first night took about 5 hours! I was glad when that ordeal was finished and the line was out, even more glad was my husband!
I'm glad you are so close to the hospital, much better to take charge of when you get it done, than to wait around for people who don't show up.
Later, Mary
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Hi Jags
Thank you, I do think my leg is better, the red area is much smaller and not inflamed, and I think the scab will fall off soon. I guess it had to heal from the inside out. That area still burns and tingles, I think that is the neuropathy acting up and it will probably do that for a while. When I had an injection above my other ankle about 3 years ago for varicose vein treatment it hurt for almost a year, I think that was also neuropathy that caused pain for so long. I am trying to be more careful in my daily life so as not to get so many injuries.
By the way, I think your English is very good! And I'm glad the monsoon has arrived to cool you off.
Hope you are feeling well, Mary
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Good evening (or morning or afternoon depending where you are)
and Happy 4th of July to those in the US. I am now exactly 2 week’s post final chemo. I had a follow up exam with my oncologist today and then will not see him again for 3 months. He has referred me to a radiation clinic and I will be scheduling an appointment with a radiation oncologist there.
Susie-During chemo I did not have a picc line OR a port. I was not offered either. In hindsight, maybe I should have. 4 dose dense AC, followed by 12 weekly taxol, plus 12 weekly blood draws before each taxol was hard on my veins. Luckily, I have fairly large veins, so the oncology nurses and the technicians in the lab had little problems “poking” me. I’m glad your hospital is close for when you need your picc line flushed. How are you feeling on docetaxel? Are your side effects manageable?
Sylvia- I taught primary school for 31 years before retiring. My students, over the years, ranged in ages 5-8 years old. I enjoyed that age group and miss their energy and enthusiasm. Fortunately, I get to spend a lot of time with my 18 month old granddaughter, who keeps me on my toes!
Mary-I had a great time in San Francisco. It is such a beautiful, diverse, active city. It was hard to choose a restaurant for lunch because there is such a variety of food everywhere. I ended up walking a couple of miles and, aside from the annoying neuropathy in my feet, I felt good. I wore compression knee socks, which, for whatever reason, makes me feel more steady on my feet. Plus, the socks kept my legs warm on a chilly day in San Francisco.
After my oncology appointment today, I had a mammogram. I have not had one on my healthy breast since last June. I have fibrocystic breasts and self exams are difficult because I’m always feeling lumps and bumps, so I breathed a sign of relief when my oncologist sent me an email this evening telling me my mammogram was all clear.
Hope everyone is having a great week,
Mo
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HI, Sylvia
It is our Independence Day today, I am invited to a party at the home of a large family, they have speeches and a parade by their children and friends' chldren, along with the usual food and fireworks. I was invited to a get-together with fireworks last night too, but I didn't feel well enough to go, I have had to be out in the heat this week enough that it got to me. It was still 90F (32C) at 8:00 PM.
You have lived in some warm places, I think we just become more sensitive to extremes over time. Plus, for me, my heat sensitivity started many years ago. I was playing softball in high heat and we were drinking beer instead of water.(smart, I know!) I became very ill to the point of almost passing out, also became very weak and so hot I had to be immersed in a cold bath, I was ill for several days.
You say that Devon is one of the nicest places to live in UK, but you don't feel like a Devonian, what do you mean?
The book on Understanding Venous Reflux sounds very interesting, I have to say the doc I went to about treating them was not good at explaining things. If I do anything more with them, I will definitely go elsewhere. I have read though, that treating them is not absolutely necessary, but helpful. And then read elsewhere that if you don't treat them you will have worse problems later.
We have new posters going through treatment, but we haven't heard from Hanieh in a while. I assume Marias is with her mother, who is ill. Adagio is on a trip, I believe.
I hope your arm is completely well and the lymphedema is not bothering you. Five weeks later, I think I can finally say my leg wound is healed. I still have a red spot a couple of inches in diameter, but it's not swollen and gets lighter every day. I am trying to make a conscious effort to be more careful about my movements, and not bang into so many things.
Have a great day, I hope you get some rain soon, maybe a mini-monsoon!
Love, Mary
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Hi Moni,
I'm glad to have the PICC line which makes everything easier but not everyone in the chemo unit has one so I don't know how they decide.
I had a couple of rough days after my first doxetaxel -- not the first two days but the two after that. I had heard someone in the unit talk about having 'flu like symptoms' for a couple of days and that's pretty much it: headache, sore throat, aching joints, though no fever. It's much improved now (day 5). After three cycles of FEC with no side effects to speak of, I shall settle for a couple of rough days on each of the doxetaxel cycles. When I was told I was having four months of chemo, I envisaged four months of being ill so am grateful to have led almost a normal life so far.
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Hello Monica and Mary,
Thank you for your posts. I shall try to answer sometime soon but I am very busy at the moment.
To Monica, let us know when you have your date for radiotherapy.
To Mary, I hope you had a nice July 4th. I think you would get a lot out of that book about venous reflux. It has made me realise that the whole treatment of varicose veins has been wrong. I shall explain in more detail later. For the moment I can just say that varicose veins are the good guys and appear on the legs as they try to protect the system from the underlying cause of inflammation due to failing valves in the veins, causing blood to go to the feet. Staining around the ankles is an indication of stage 2 of venous reflux and can go on to develop into venous ulcers. Apparently there is a procedure known as a minimally invasive endovenous surgery. It is only available here, apparently, privately. I have no idea really what it involves. I saw my GP yesterday, mentioned it but I do not know if she knew anything about it. The NHS does not do any treatment for any of this unless there are ulcers involved!!
I shall talk more later.
To Susie, I do hope you will be alright with the taxane drug.
How do you feel about the NHS being 70 years old today? I feel that it has had it. So much is privatised now and my information is that the NHS is short of 100,000 employees.
Best wishes to everyone.
Sylvia xxxx
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Hello Mary,
I do hope you are feeling better than when you posted to me on July 4th. I think the heat a lot of us seem to be having is probably getting to us and making us feel a bit below par. The heat is back here in Exmouth and I think people are getting run down. June has been the driest month on record and we have had only 5% of the normal rainfall.
It is difficult to explain why I do not feel like a Devonian. Life seems to be very slow here and they do say that with Devonians it is mañana but without the urgency! I do not have a Devon accent and I am very quick minded and like to get things done.
Talking to my GP the other day I realised that the varicose vein issue with the NHS is a dead issue. I do hope you manage to read the book on veins sometime in the future.
I have been doing quite a lot of thinking about the thread and wondering where we are going with it. As you say, we have not heard from some of the other posters who have been with us quite some time, like adagio, Hanieh and Marias. It naturally makes you feel concerned. I am not sure what Marias is doing. I do remember she went to Sweden to see her mother and her mother was about to leave the hospital but I am not sure whether Marias went on her planned holiday in the end, stayed in Sweden or went back to Colombia. As for Hanieh, I know that there seemed to be some trouble in her country, so who knows what is happening? I just hope both of them are making progress with their health issues.
It is true that we have some new posters, but I am not sure how dedicated they will be and I do wonder if we have said all that we can say.
There is so much information on this thread, many diagrams etc., that I think that the best thing when discovering it is to make your way through from page 1, like Peter did (PeterandLiz) in the past. If you do this I think you will be a very informed new patient.
I was looking back at the names of the people in our group and was somewhat disappointed that the Brits do not post much here or anywhere on the forum that I have looked at.
I can understand that some women may be suffering during treatment, especially through chemotherapy. In the UK we do not seem to be doing that well with cancer treatment of any kind, compared to Europe.
I remember one post here where someone was saying she thought breast cancer patients got different drugs in th US. I do not think this is the case and I think people get confused because sometimes the brand name of the drug is used and other times it is the generic and proper name of the drug. It would be so much better if just the generic name was used. It gets even more confusing when the brand name and the generic name begin with the same letter, such as epirubicin (Brand name Ellence). As far as I know the generic drugs for breast cancer are doxorubicin, epirubicin, cyclophosphomide, paclitaxel, docetaxel. These seem to be the most common and some patients also get fluorouracil and methotrexate. I do not know why the last two are sometimes added to the regimen. Of course we now have carboplatin.
The lymphoedema is not bothering me that much. I was much more bothered by the mole and the treatment. I am certain the mole was caused by the radiotherapy treatment. It was a new one and seemed to come from nowhere. I bet that sounds familiar with reference to our triple negative breast cancer. You will probably remember how many of us said it seemed to come from nowhere.
I have just read a new little book, 2017, entitled Breast Cancer – an effective guide to managing and treating breast cancer using natural healing remedies, by Mari C. Alvarez. It is just 83 pages long and is quite easy to read. There are seven chapters and the first three are all about breast cancer – causes, detection, effects of chemicals etc. The other chapters are about good nutritional habits etc. I was most interested in the chapter on chemicals and how they affect the mammary glands and the chapter on managing stress and emotions to prevent cancer. It is a nice little book and written with compassion.
That is about all for now, Mary. I hope to hear from you as I love to discuss things with you.
Love.
Sylvia xxxx
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Hello Sylvia, Mary and all
Sorry I have not been here for a while. But I missed all you here. Actually there are so many posts with some new members that I should spend quite a long time reading them all.
Actually I was studying day and night for the IELTS exam as it just demands techniques. Today finally I took the exam and the results will be ready in two weeks. The reason I took this exam is that we are thinking about getting a permanent residency in Canada through express entry. Things are getting worse everyday here and I think I should do this for my daughter's future. I hope I manage to do this.
About a month ago, I had my first checkup post treatment. It was blood test and sono of breast, abdomen and pelvic which turned out to be good except a 3mm lump on my remaining breast that seemed to be benign. My onco wants to have a 3 months follow up for that.
Love
Hanieh
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HI, Sylvia
We are getting a break from the extreme heat this weekend, with the high heat returning Monday. So it seems a good time to get some things done outside today that I haven't been able to do lately. We have also been missing the rainfall, still green but the ground is very dry.
Perhaps the Devonians are more slow-moving because of the seaside holiday atmosphere, whereas you are familiar with faster city life?
So it sounds like the NHS does not consider varicose veins of much importance. I got mixed messages about them too. Here insurance does pay if you have vein treatment, so it's a medical condition; but yet you are also told it's cosmetic and up to you whether you have anything done. The doctor I saw painted a gloomy picture of aging and not having them fixed, but then some of the literature I saw online said it was up to me, and not that serious. I do know I have had the issue from a young age, and since chemo I have had the problem of slightly swollen ankles by the end of the day. I saw my acupuncture doc yesterday, he suspects the swelling and the problem of the wound healing, is due to a combination of varicose veins, a little lymphedema in the ankle area, and neuropathy thrown in just to make it more interesting. I will keep my eyes open for the book on veins, I was in a bookstore the other day, but almost all the books in the Health section were about weight loss.
I think the thread is doing what it was intended to when you started it; it is offering information and support to people who are finding themselves diagnosed with BC and come here asking questions and looking for support. Along the way we have made friendships with some of the posters who stay on even after returning to their regular lives, and we miss them when we don't hear from them. It is hard to say where Marias is at the moment, it probably depends on how her mother is doing and where she is. Adagio was going on a trip, I don't remember where at the moment. I hope Hanieh is okay, going through another round of treatment has been hard on her, I'm sure. I also think many people when they finish treatment do not want to think about it anymore, and people who are going through treatment don't always feel like posting.
I agree with you that the drugs given for BC treatment seem to be the same in UK as in USA. In my case, I was given Cytoxan (cyclophosphamide), Adriamycin (doxorubicin) and Taxotere (docetaxel). I did not get anything that seems to correspond to Epirubicin or ellence. Unless I am missing something. I did not have methotrexate or fluororacil either. I was given a steroid during infusions and steroid pills before and after, and I was also given Benadryl along with my infusions.
At the moment I don't think I want to read books on BC, I do read a lot online and get a lot of postings in my inbox from various experts on the subject. I did donate the BC books I had to the Cancer Care Clinic Wellness program, I just kept one of them.
I did go to a 4th of July party, it was very nice, they had the parade, and the short speech, and then we had dinner and as soon as it was dark there were fireworks. I chatted for a while with a lady who went through treatment for ER+ BC at the same Clinic and same time as I did, she now has pain in her joints and blames the pill she has to take for 5 years. We compared notes on our conditions, she advised me not to have the surgery on my rotator cuff unless absolutely necessary, a woman she knows had it done and it kicked off severe lymphedema in her arm. Good to be warned, I suppose, acupuncture doc told me the same thing.
I had better stop for now, I have lots to do outside while weather permits, and I hope you have a nice weekend!
Love, Mary
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Hello Hanieh,
It was nice to hear from you and I really missed you on the thread. Take your time if you are going to try to catch up with the posts you have missed.
There have not been that many new members really, and the regular ones have not been posting so much but for some it is holiday time and they are taking a break or pop in from time to time. You will remember these ones well. They are Pam and Val from the US. The new member from the US is Monica. Mary is still very active and one of the main contributors to the thread.
From Canada we still have adagio and 53Nancy. From Australia we have Kath, a long time poster, and CocoonCat, who is relatively new. They both seemed to be suffering a bit from the winter blahs in their country.
We are all wondering what has happened to Marias from Colombia. Last time we heard from her she was visiting her sick mum in hospital in Sweden.
Other newish members are SusieW5 from London UK, Jags and Sid from India and there was a post from HelenLouise in Australia but she has not posted since.
Sarah (LoveandLight) from London UK, and who was posting for her mother, has not posted in a while, neither has Kathy from the UK and who was posting for her sister.
I was interested to read that you have been studying hard for the IELTS exam. I shall have to look up what exactly that is.
I have just looked it up to make sure but I knew it must be something to do with qualifying in English in order to get accepted into a country. What sort of level of English is asking for? I am sure that you will do well. Be sure to let me know the result.
I do hope you will be successful in getting to Canada if you decide that you definitely want to go there. I can understand why and I can understand that you want to do what is best for your daughter. If you go to Canada, have you any idea of the province that you would prefer? Ontario is where most of the population of Canada is.
I was interested to know that about a month ago you had your first check up post treatment. It looks as though that the results were good on the whole and I do hope the 3 mm lump on your remaining breast is benign. Should they not have been able to tell what it is through the ultrasound? Was it just too small to tell?
There is not a lot of news from Exmouth at the moment. The heat is very tiring and we are into the silly season with a lot of tourists roasting themselves on the beach. I have also noticed there a lot of students here at the language schools we have in Exmouth.
In England lots of people seem to be following the World Cup and in their minds think that England has already won it! I say do not count your chickens before they have hatched. I am not at all interested in football or the Wimbledon tennis. I am more interested in the state of this country. There is so much wrong but I do not think those in power care. Our NHS is short of 100,000 staff and I do not think it is going to get out of this crisis.
That is all for today. Take care and keep in touch.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. It looks as though that we are both in need of some rain, although we are in different countries.
As for varicose veins, I just think the NHS has got the treatment all wrong. For a vary long time they removed them because they considered them as some kind of illness. Apparently the veins always reappeared. From my reading the varicose veins appear because they are trying to fight an underlying problem. To me this would explain why with the treatment that has been used, the varicose veins reappeared because they were still trying to help the underlying problem. Now it seems these varicose veins are considered cosmetic and are not treated at all on the NHS. What I want to follow up is what is involved in this minimally invasive procedure known as endovenous surgery, which, according to the book I read on veins, this professor and doctor carries out in his clinic. Do you know of such a procedure in the US? From my reading the medical condition is not the varicose veins but a condition called venous reflux. Staining around the ankles (venous eczema) and venous ulcers are stages of this venous reflux problem and the varicose veins appear in an attempt to help the inflammation caused by this venous reflux.
I do agree that chemotherapy, and let us not forget surgery and radiotherapy, have worsened things within our body. These long term effects are very serious but are somewhat dismissed.
Another thing we have to remember is that the veins are close to the lymph system and so damage to the lymph system through all three stages of our cancer treatment could have also damaged the vein system. Lymphoedema and neuropathy are both nasty with all sorts of consequences. I have read that lymphoedema can cause blood pressure to increase and also cause an increase in cholesterol by leaving debris in the lymph.
Let me know if you do find any other books on veins etc. \what I am discovering as I read more and more books, that are up to date, is that all the chronic illnesses we suffer from today in our modern society is that they all seem to have the same underlying causes of lifestyle, that is bad nutrition, lack of exercise, and stress. I am reading a book entitled The Alzheimer's Solution – A revolutionary guide to how you can Prevent and Reverse memory loss, by Dr Dean Sherzai and Dr Ayesha Sherzai – co-directors of the Brain Health and Alzheimer's Prevention Programme if Loma Linda University. It is a most interesting book and a good reference one. Do you know much about Loma Linda? It is supposed to have the healthiest and most long lived people there.
I think you have given a good summary of the thread.
As for the breast cancer drugs, there is just this small group and they are constantly used. The drug doxorubicin (brand name Adriamycin) is in the same group as epirubicin (brand name Ellence) and they are both cytotoxic antibiotics and I remember being told they turn your urine bright red in colour. I would think they are both the same but sometimes they are sourced from different things. My oncologist told me that epirubicin was less harmful on the heart than doxorubicin, but who knows? Apparently they are very widely used and powerful anticancer drugs. They have nasty side effects.
Cyclophosphomide (brand name Cytoxan) seems to be used in most regimens and
belongs to the group of drugs known as alkylating agents.
We, of course, know that paclitaxel (brand name Taxol) and docetaxel (brand name Taxotere) belong to the taxane group of drugs. Again I was told docetaxel was less harmful on the heart than paclitaxel, but who knows? Some years ago I remember reading about the taxanes in the newspaper and seeing pictures of a hedge of trees being harvested to make the drugs. I remember that the drugs in the US and the ones in the UK came from different kinds of yew trees.
That is about all for today. I shall try to answer the rest of your post later.
Love.
Sylvia xxxx
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Hello Monica,
I was interested to know that you taught elementary school. I am sure that must have been most interesting.
I taught 11 to 18, both French and English as a second language. The way school has gone here today I do not think I would enjoy it as much.
Keep in touch and let us know how you are getting on.
Fond thoughts.
Sylvia xxxx
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Hello all,
I have been following this forum for the last month, following my mother's shock diagnosis of TNBC, and it has been such an excellent source of information and support.
My mother is not one for forums-or, in fact, googling at all! but I am! And I would love to be a part of this ongoing conversation.
We only know so much at the moment about my mother's situation, as she was in such shock she couldn't remember most of what was said. She actually kept the diagnosis from myself and my brother for 3 weeks, and clearly a lot of information-giving went on at that time , which we obviously weren't able to help with.
She knows she has Grade 3 Triple Negative Breast Cancer. She thinks they said "Stage 3" too, and also thinks it is metastatic as the locum doctor, who she saw when first diagnosed, said it looked from the breast biopsy that it had metastasised. However, in the same interview, the locum also said that the ultrasound of the underarm area and lymph nodes looked clear.
From what I have read, this is all conflicting information. If they think it is metastatic, why isn't it Stage 4? Why do they think it is metastatic if they have only done a biopsy of the breast, and, if it was metastatic, would the lymph nodes be clear? (we don't definitely know they are of course- my mum had a sentinel node biopsy , which will clarify things further)
So I don't know if we are talking about a Stage 2/3 cancer or a stage 4 one at the moment...either way, we are in shock as my mum seemed pretty fit and healthy, given that she's 73.
My mum had a mastectomy with sentinel node biopsy, 2 weeks' ago, and is recovering well. We are meeting with the oncologist on Wednesday 11th July, and will find out a clear picture I guess.
Anyway, I wanted to say hi to everyone ,and a big thank you to Sylvia , who is clearly the source and inspiration of this thread.
We live in Oxford and are under the care of the Churchill Hospital. I have also persuaded my mother to get a second opinion from a man called Dr Mark Harries up at Guy's Hospital in London. He is apparently an expert on triple negative cancer.
Does anyone live near us?
Flora
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Hello Flora,
I was very interested to read your post and am so glad that you have decided to post here on behalf of your mother. Please try to reassure her and tell her that she can get through this. Thank you for your kind words about the thread and I am glad to know that you found it an excellent source of information and support. You will find a thoughtful and helpful group of people here.
Be careful when you go on the internet, as I feel information there can frighten people. You are very welcome to be part of our group. We have had over the years men posting on behalf of their wives and sisters and daughters on behalf of their mothers or siblings.
As your mother goes through her treatment, try to make sure that she always has someone with her, so that information is not missed. I always had my husband with me and made notes. For the patient, with the shock of a breast cancer diagnosis in her head, it is easy to miss what is being said. It must have been an awful shock to your mother to have this diagnosis as she kept it from you for three weeks. This does not surprise me as I was reluctant to tell anyone for some time, except my husband. Your mother will have needed time to digest this.
I am assuming that your mother got the diagnosis either from a routine mammogram or that perhaps she found a lump doing her own breast examination and went to see her GP about it, who would have referred her to her hospital to get it sorted out.
What we now know is that she has non-hormonal breast cancer and that her receptor status is negative for oestrogen, progesterone and HER2. Do you now know what type of breast cancer it is? The most common is invasive ductal carcinoma (IDC). Do you know the size of the tumour? I ask this because the stage of the tumour is based on the size. My tumour was large at 6+ cms and although back in 2005 I was not told the stage, it must have been stage 3, I think.
As for the grade, grade 3 is very common for triple negative breast cancer, but a few are grade 2.
I am assuming that at the hospital your mother would have had a fine needle aspiration to take a sample of the tumour. From there, going from my own treatment, there would be a mammogram, an ultrasound and a biopsy of the tumour to go for analysis. From there it goes to size, stage and grade, and then the proposed treatment will be worked out and conveyed to the patient.
You do need to clarify whether the tumour has metastasised which means that it has gone to other parts of the body. Metastatic breast cancer would be classed as stage 4. Of course I am not a doctor but I think that if the lymph nodes under the arm are clear, then it would be unlikely to be metastatic. My understanding is that cancer cells are spread to other parts of the body, via the lymph nodes and can spread to the lungs, liver, bones or brain.
You also need to understand that when cancer cells have spread to the lymph nodes under the arm, that is still primary cancer and not metastatic. I had one lymph node affected, the first node, the sentinel node. Usually during surgery this is removed and a number of others to make sure there is no further spread. My breast cancer surgeon removed 7 nodes but only the first one was affected.
I noticed that you said your mother saw a locum doctor. If that were me I would want an appointment with my oncologist and my breast cancer surgeon to get all the facts and to know exactly what my status is before I begin treatment.
I do hope you will be able to get all this clarified so that your mother can have peace of mind before she starts treatment and that you and your brothers can also have peace of mind and be there to support your mother through her journey.
Getting towards the end of your post I noted that your mum had a mastectomy with a sentinel node biopsy two weeks ago and is recovering well. I am sure that your meeting with the oncologist on Wednesday July 11th will clarify everything and that you will be able to proceed with the suggested treatment with peace of mind and confidence.
It could be that the tumour is not classified as large because the mastectomy has been carried out before anything else. When the tumour is large, as mine was, the procedure was to do pre-adjuvant chemotherapy (chemotherapy before surgery) to shrink the tumour to make surgery easier. I had six months of chemotherapy, every three weeks, and then three weeks later I had a mastectomy.
The chemotherapy I had was three months of EC (this is epirubicin and cyclophosphomide) and then three months of T (this is the taxane drug, docetaxel, brand name Taxotere).
I do hope this will help. I was diagnosed in 2005 just before my 63rd birthday and I had never been ill before. The tumour appeared to come from nowhere and I seemed to be alone at the time with the tumour receptor status of TNBC and that was not mentioned. I was just told I was non-hormonal, tamoxifen would be no good and the prognosis was not good. I ignored all this and did my own research and did my own thing. I was also told that TNBC usually affected much younger women. I do not know what the statistics are now because I do not take any notice of statistics or percentages. On June 20th this year I marked 13 years since diagnosis and I have had no recurrence or metastases but I still take nothing for granted.
Thank you for your kind words about the thread. It makes it all worthwhile. I started it in September 2010 because I thought that this TNBC and breast cancer in general was a bit in the dark ages here. It is nearly eight years old now and is full of information and excellent posts. I wanted to make it a thread of which to be proud.
I am pleased to know you are in Oxford, England, as I started the thread initially to help Brits, but we have had posts from many different countries.
It is always useful to get a second opinion and it looks as though the doctor you have mentioned at Guy's Hospital would be exactly the person to help.
Please let us know how you get on and that you do get your mother's situation and proposed treatment sorted out.
Sending you and your mother very best wishes. You can do this.
Sylvia xxxx
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Hebe heaven
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Thank you so much, Sylvia, for your helpful and comprehensive answer.
It is largely thanks to the information thread that I knew my mother's account of her situation contained some conflicting details.
I don't know whether her having the mastectomy first had anything to do with anything. Apparently the doctors were going to start her on chemo straightaway when they saw the tumour and realised it was a high grade, and then, when they found out it was triple negative, decided to do surgery first. I don't know why this decision was made and neither does my mother.
I, like you, think that if the lymph nodes seemed clear (which may or may not turn out to be the case following her sentinel node biopsy), it wouldn't normally be classed as metastatic, but she seems convinced it is, so I'm not sure whether they did something else - a scan or something- to suggest this.
I thought I might try to ring her MacMillan nurse tomorrow to see if we can clarify things a bit. If not, we'll hear more on Wednesday.
I am finding it hard to know whether to just assume it's Stage 4 already, and start looking into that, or nurture the hope that, at least for now, it may be still a primary cancer. (Not that Stage 4 means the end of the world of course- I want to convey this to anyone reading. I have recently read a blog of someone who lived for 5 years with metastatic triple negative cancer, and have a friend of a friend who is currently still very much alive and kicking two years after her diagnosis of Stage 4).
The photos of the hebes were quite lovely. I am an avid gardener, but , since my mum's diagnosis, have rather lost the energy for the normal things I love. I have 4 young children, 3 boys and a girl, and all I can do at the moment is focus on ensuring all their needs are met. They are a welcome distraction for myself and my mum, who is a very local and devoted grandmother.
These forums are so helpful.
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Happy Sunday Everyone,
We're having a busy summer, as usual. We had some friends over for dinner last night, got out the record player, and played some records. If you haven't done that in a while, I recommend it. It was a lot of fun, and at this point, everyone's surviving records have such stories.
I wanted to share my thoughts on my trip to Ireland and Scotland, or some of them anyway, and some of the pictures. Here were some of the high points:
- A visit to the Cobblestone pub in Dublin, a place that hosts "trad music sessions," for preservation, more so than as a tourist draw.
- A full day, escorted tour via train and coach to the Cliffs of Moher, which included a quick trip through Limerick, where we could see the "lanes," from Frank McCourt's amazing book, Angela's Ashes, a lovely pub lunch, and a stop at the limestone landscape at the Burren. On the train back to Dublin, we were amazed at how the sun was not quite setting, even though it was past 9pm.
- A visit to the Long Room at the library at Trinity College, Dublin, which was one of my favorite sights ever, as a voracious reader
- A stay at a flat on the top floor of a quirky, lovely building in Edinburgh, across the street from the Scottish National Portrait Gallery, with a view of the Firth of Forth, access to the massive Queen Street Gardens, and a fully equipped kitchen. We were able to stock our little kitchen, and have breakfast in our room every day.
- We were treated to afternoon tea at Palm Court of the Balmoral hotel by a survivor friend, and it was very special, and very delicious. It was elegant but relaxed. There was far too much food, but we really enjoyed it.
- A hike in the Hermitage, which I have been wanting to return to since our first trip to Scotland. The village of Dunkeld is nearby, and we were able to have lunch while overlooking the River Tay
- Attending a Ceilidh, (similar to a square dance) at Summerhall, and dancing with a euphoric mix of people. Many of them were kilted gentlemen who helped us learn the dances. I agree with this video that there is so much spinning. I love dogs, and was happy to see that they were freely allowed in pubs and on trains. I noticed that eggs were not refrigerated there, as they are here. It seemed in general like customer service was better, that people took their jobs seriously, and were held accountable for doing them well. It was a great trip, though we left our keys in Ireland, and I got food poisoning there as well. Overall, our misadventures were minor. It wasn't a cheap trip, but it wasn't outrageously expensive either. Now it's time to settle down and save some money again.
My recent oncologist checkup showed elevated, but not alarming CA 15-3 levels, so he'll check them again soon. I feel great, and that I'm getting stronger and more healthy all of the time, though.
I woke from a nap on the coach to see members of our group tottering around on The Burren, in Western Ireland
Not the best picture of the Long Room...
The beginning of our hike at the Hermitage
Gorgeous flowers in Dunkeld
Afternoon tea at the Balmoral
Inside the Scottish National Portrait Gallery
I have run out of time today, but I wanted to say that doing all of this was hard to imagine while I was going through and recovering from treatment. To those of you who are struggling, better times are ahead for you.
Cheers,
Pam
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Hello Flora,
Thank you for your reply to my post and I am glad to know that this thread has been helpful to you.
When your mother sees the oncologist on Wednesday I am hoping you will be with her and will perhaps have written down any questions you have that will give you peace of mind for your mother's cancer journey.
Why not ask why surgery was done first of all rather than doing the chemotherapy first? It is useful to know and it helps all of us to make progress. Chemotherapy is usually done first for large tumours to shrink them and make surgery easier. I think this is true whatever the tumour receptor status.
If I were you I would ask what type of breast cancer your mother has. Is it IDC, invasive ductal carcinoma, is it lobular breast cancer, inflammatory breast cancer, etc.? I do know there is a type of breast cancer known as metaplastic breast cancer and I do remember a lady had this on the thread some time ago. It is easy to mix up metaplastic breast cancer with the term metastatic breast cancer. If it is metastatic which means, as I have said, spread to other parts of the body, then that is stage 4.
There is no harm in ringing your mother's MacMillan nurse, as she is there as a first port of call during a patient's treatment, but you do need to hear what the oncologist and breast cancer surgeon have to say. With cancer treatment there is a whole team that gets together to discuss the situation.
For the moment, wait for the appointment with the oncologist and get the facts. It is better not to assume anything before that.
I do agree with what you say about perhaps having to live with a diagnosis of stage 4 metastatic breast cancer. Patients can live for years with this stage 4 and it is always best to be determined and positive. Whether the patient has hormonal breast cancer or not, there will be chemotherapy drugs to treat whatever has to be treated. I do not like all this emphasis on triple negative breast cancer being more aggressive and all the doom and gloom surrounding it. Surgery, chemotherapy and radiotherapy are standard for both. With hormonal after standard treatment you have drugs to take, such as tamoxifen and/or aromatase inhibitors and I know from this forum and from friends etc., that these drugs are no picnic, have nasty side effects and have no guarantees.
I have a friend who had hormonal breast cancer and was in the clear for 14 years and then it metastasised. She has been with this status for nearly three years and looks and feel great. I think nutrition, exercise and a positive attitude have helped with this.
I had another friend who was hormonal and this time her receptor status was triple positive, meaning that she was oestrogen positive, progesterone positive and HER2 positive. I remember being told that I was lucky to be HER2- as I would not need Herceptin injections after the standard treatment. That particular friend had her cancer come back within about three years of finishing treatment. It metastasised everywhere, but she still survived a few years and was fine during that time. She also had good nutrition, exercised but did have some stress.
I was wondering whether your mother had any scans before her treatment, surgery. When I was diagnosed I was given a CAT scan and a bone nuclide scan. This must have been done to see what was going on in my body and the bone nuclide scan was to see what was going on with the bones. I know that some patients seem to have different scans. There are also MRI scans and PET scans. Blood tests are important too. In my own case the blood test showed that my calcium was high. High calcium in the blood can be a sign of metastases to the bone. My bone nuclide scan was clear. Thankfully my oncologist decided to do a parathyroid hormone blood test to see if that was high, because an overactive parathyroid gland can cause high levels of calcium in the blood. It turned out that I did have an overactive parathyroid gland that was affecting the calcium level. Eventually I had surgery to remove one of the four parathyroid glands and I was cured, so I was told. My breast cancer surgeon told me that the parathyroid problem preceded the breast cancer. There is research showing that a parathyroid problem may cause breast cancer.
I am giving you all this information so that you are a fully informed person for your mother. On the thread we all believe knowledge is power.
I was interested to know that you are an avid gardener. I can understand that with what is going on with your mother, has rather sapped your energy. All this will get sorted out and you will get back to your gardening. It is good to know that we share this interest and there are others on the thread who also love gardening.
I can imagine how busy you must be with four young children, three boys and a girl. I can understand what a welcome distraction they must be for you and your mother. Those children will be a great comfort to both of you.
One last line for today and that is I also had those two scans after I had finished all my treatment. They were clear and I was told I had an excellent pathology report and was NED (no evidence of disease).
Take care.
Best wishes.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I can tell that you had a really great holiday and that it is one you will never forget. The Celts, Scottish, Irish and Welsh, even some of the Cornish, do know how to enjoy themselves.
I think they are very different from the English who are originally Anglo Saxons, but it is all very mixed up now. We are a strange country. We are supposed to be the United Kingdom but I feel we are very disunited. For me it stood out with the World Cup, where we do not go in as the UK but each part of the country has its own football team. I am not remotely interested in the World Cup.
I do hope you will be able to settle down now after all that excitement. I still like the same music as I did as a very young woman, Elvis Presley, Roy Orbison, Buddy Holly, Simon and Garfunkel, John Denver, and Slim Whitman. I also like the Three Tenors and Charles Aznavour. I do not much like the singers of today, except some of the tenors. My favourite classical music is by Mahler.
I have been surviving the heat here by watching some really good French films on TV5, which I get through satellite. Some of them are brilliant.
That is all for now. Have a good week.
Love.
Sylvia xxxx
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Hello Mary,
I just wanted to finish what I was saying about the common cancer drugs that we all get, albeit sometimes in different regimens. I mentioned the different groups to which they belong. They were alkylating agents – cyclophosphomide, cytotoxic antibiotics – doxorubicin and epirubicin, the taxanes – docetaxel and paclitaxel. The other group is known as antimetabolites and these include fluorouracil and methotrexate.
I remember you said that you had not had either of the last two drugs. It was the same for me. I have noticed that some patients get one of these and others do not and I do not know why. The oncologists will know and all patients can do is ask. I know that I have often seen FEC as a regimen, which is fluorouracil, epirubicin and cyclophosphomide. I had EC.
I do hope you will have a good week and an enjoyable and relaxing one. In Exmouth the hot dry weather continues with no rain in sight and I am really fed up with it now. It is awful just to go outside.
Thank you for all you do on the thread. After Pam's photographs and the video will you be heading for the lands of the Celts any time soon!?
Love.
Sylvia xxxx
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Sylvia, my tumour was also 6cm+ but I was given immediate surgery in the form of a lumpectomy. It may be that procedures have changed in the last thirteen years or that different hospitals take different decisions, but I see nothing odd in Flora's mother going straight to surgery.
Flora, this is as hard for you as it is for your mother, perhaps harder with all your other responsibilities. I watched my husband die of cancer of the oesophagus in 2015 and that was much worse than being told that I had primary breast cancer, which has a very good survival rate. It sounds as if your mother will be relying on you and your siblings to interpret the apparently conflicting information that she's been given so far.
As Sylvia says, make a list of questions and don't let the oncologist hurry you. In my experience they are almost always running late but stick to the seat of your chair until your questions have been answered.
I grew up in Oxford. I suspect that the healthcare there is excellent because the prestige of the university attracts some of the best people.
All the best
Susie (2/3rd way through chemo)
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SusieW5 and Sylvia, thank you so much for your replies.
Sylvia, my mother still insists that "they think it might be metastatic" but says she hasn't had any scans, so I'm still not sure why "they" think this. Maybe, as you say, they actually said "metaplastic"- I really don't know. She does have an MRI scheduled for the weekend, so maybe that is to check her body over? Anyway, I must be patient and wait for the (hopefully!)clearer picture on Wednesday. My brother and I will definitely be there with her, armed with our notebooks!
My mother was saying that the original doctor she saw(the locum) actually spent most of the time saying what a pity it was she didn't have X/Y/Z type of breast cancer and listing all the treatments she couldn't have. No wonder my poor mum was in shock for so long! I feel really quite angry about this. Doctors have to try to give patients some hope, however small. If someone has TNC, they should say something like: this is an aggressive cancer, but it is treatable with chemotherapy and many people do not have a recurrence. Those who do progress to Stage 4 also have options, and there is a lot of research going on in this area. Even if someone, say, has advanced liver cancer with days to live, doctors can surely phrase their diagnosis/information in such a way as to give the patient reassurance/peace of mind-and thus hope?
Thanks to you, I have also persuaded my mum to start drinking green tea (3-5 cups) and cut our dairy as much as possible. I have loaded her cupboard with flaxseed, walnuts, almonds and seaweed! She is actually pretty amenable to this!
I'm also interested in the Iscador you took. What did the Bristol hospital tell you about it? And the doctors were happy for you to take it during chemo? I might look into that too.
SusieW5. Interesting to hear that you also have surgery first. I'm so sorry to hear your husband died of oesophageal cancer. That must have been such a distressing experience. Although my parents have had all kinds of health problems over the years, mostly neurological, and my dad now sadly has advanced dementia, this is our first journey into the world of cancer. It is of course a strange and frightening one, but these forums help a lot with that side of things.
How funny that you grew up in Oxford?Where do you live now? It is a lovely city, and I hope that what you say about the excellent medical facilities is true. But then I would like to hope that anyone getting TNBC gets excellent treatment, wherever they are.
We are seeking a second opinion from a doctor who works with Professor Andrew Tutt (Professor Tutt apparently heads up a team at King's Hospital which focuses on TNBC). I don't know how much this will add to the picture but I thought why not? I want to ask him about the order of the standard chemotherapies and whether Xeloda/Eribulin should be added to the mix afterwards. Also I'd like to ask about whether it's worth my mum taking aspirin and/or metaformin after finishing chemo? Of course all these questions will depend on what the doctors say on Wednesday and whether they think her cancer is primary or secondary.
It is soo hot here in Oxford, and hard to sleep at night. Even the children are rather tiring of the paddling pool (but not the ice creams!)
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I've been in London since 1974, Flora. Oxford is a great city, though, I paid a visit a couple of years back, stayed overnight at the hotel near the station, walked my old stamping grounds and saw King Charles III at the Playhouse. I worked at what was then the New Theatre for a while before university, and at the Bodleian. It's a city on a very liveable scale and I did wonder idly about retiring there but I'm and out-and-out Londoner now.
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I have been trying to work out what the bad taste in my mouth most resembles and finally realised that it's the bitterest of olives. Now, I like olives, but not of industrial-grade bitterness and not in my glass of milk!
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Hello Susie,
I think you are right and that different hospitals may have different ideas about treatment. We are not doctors on here and we can only relate our own particular cancer journey and how we experienced everything. We can give tips that we used to deal with any problems arising on our journey. We have to have confidence in our medical teams and trust that the treatment they come up with is the best that they believe will get us through. I had great confidence in my oncologist, my breast cancer consultant surgeon and my breast cancer care nurse. I was very happy to have an all female team and a female GP for most of the time. All that suited me. I was happy to have my chemotherapy first and was not given a choice between a lumpectomy or a mastectomy, but I had already decided beforehand that I wanted a mastectomy. We can support Flora through all this as she supports her mother, but the decisions must be between them and their medical team.
I was very sorry to read that you had watched your husband die of cancer of the oesophagus in 2015 and I know that such a cancer is much worse than going through breast cancer. I was very close to one of my uncles (my mother's younger brother) and I watched him die of oesophageal cancer in 2010. He refused all treatment and I must admit that treatment sounded awful. He died in less than a year. I also watched my own brother die of cancer back in 1995 and that was heartbreaking. It had already metastasised when he was diagnosed and he was dead in a matter of weeks. We were all in shock.
I saw your other post about that bitter taste. It seems to be one of the effects of taxane drugs.
I did like your description of it. To me the taste I had seemed very metallic.
Keep looking forward with your chemotherapy.
Best wishes.
Sylvia xxxx
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Hello Flora,
I think you are right. Just try to bide your time until Wednesday and then make sure that you make full use of that interview and you get proper answers to any questions. Do not be hurried.
I would think you would get some more answers when your mother has an MRI scan at the weekend.
When you mention that your mother saw a locum are you actually talking about a locum at her GP surgery? If not, do you mean she saw some kind of registrar at the hospital? It does not sound as though that locum was at all helpful. As you say, doctors have to be gentle and understanding and give patient hope. Breast cancer is highly treatable and more and more patients are surviving it. Patients need to take one step at a time. We have to accept that some doctors may have a lot of medical knowledge but have poor people skills.
We are all very interested in nutrition on this thread and that interest goes back to the very beginning in 2010. We have had lots of discussions and seem to like the Mediterranean/Rainbow diet. Each individual has to make up their own mind about what they are going to eat. We can only say what we eat ourselves. I have been drinking green tea since the summer of 2005 and I really enjoy it. I buy different kinds but actually prefer green leaf tea and I always make a pot of it in the morning to have with my breakfast but I never drink it on an empty stomach, as it seems to have a strange effect on me. I do not eat any dairy products because of the growth hormones in them, but, again, everyone must do what they feel they want to do. I love nuts and seeds and they are full of good nutrients.
As for Iscador, it is something that is used in Germany to treat cancer. When I was first diagnosed I was somewhat reluctant about the orthodox treatment, so I asked my breast cancer consultant what else I could do. She referred me to a breast cancer consultant working at the Royal Bristol Homoeopathic Hospital. This consultant had already worked with my breast cancer consultant. She advised me to have the orthodox treatment but said she could help me at each stage of the treatment with homoeopathic medication. This was the way I went. I took oral Iscador from diagnosis in 2005 for five years. I took it orally because at the Royal Devon and Exeter Hospital where I was, I was advised not to have injected Iscador because of the risk of infection. Whether all this treatment helped or not I cannot say, but at Bristol my case was considered a success. I had no real problems during my whole cancer treatment, especially during six months of chemotherapy, except for fatigue. Again, we all have to decide what we are going to do and what we are not going to do. Some people are dead against all homoeopathic and alternative treatment but I tend to believe in integrative treatment, but that is just my opinion and I do not try to influence others.
I was interested to know that your dad has advanced dementia. How is he getting on and how is he being treated?
It is true that the mention of cancer is frightening but there are many other diseases that are worse. I think that Alzheimer's disease or any kind of dementia must be awful.
Take care and make sure you and your brother look after yourselves as you support your mother through all of this.
Best wishes.
Sylvia xxxx
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Dear Sylvia,
In haste as I'm about to go and visit the Maggie's Centre -which gives support to anyone going through cancer. I will report back on how I found it,as I hope others on this thread could benefit (if they have one of these centres near them- I think there are 7 or so round the country?)
Thank you so much for all your information on Iscador. I am definitely going to ring one of the Homeopathic hospitals you mention, and ask them a bit more about this.
My mother did not eat particularly healthily before-not many "bad things" but not enough good things if you see what I mean, but has now started drinking green tea, buying blueberries and sprinkling seeds on her Weetabix! She is also trying out the dairy alternatives. She has also added hummus and avocado to her lunchtime sandwich options.
I am feeling incredibly nervous about our appointment with the breast surgeon tomorrow- particularly because we have had so much conflicting information.
Anyway, it is so helpful having this forum to bounce ideas back and forth on.
I also wanted to send my love and best wishes to all those diagnosed with TNBC who are using or reading this forum (and of course to all those who aren't using it too!)
Flora
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Hi, Hanieh
It's good to hear from you! I see you have been studying hard for IELTS exams, and then took the test; I think you will have a very good result on this test. I wish you the best of luck, I can understand why you want to go to Canada. Do you have any relatives there?
I haven't posted in just a couple of days and there are a lot of posts to read just since then, I am not caught up yet either.
I'm glad your check-up was good, and glad they are watching the 3mm lump on other breast. Onward we go! Sometimes it seems to me we live from check-up to check-up, sometimes putting it out of your mind, and then being reminded when it's time to go back for another one.
I hope you are feeling well, it hasn't been that long since you finished treatment. Do you think this second go-round of treatment was easier to handle than the first?
Take care of yourself, dear Hanieh. Sounds like you are very busy, are you back to teaching as well?
Talk to you again soon, love, Mary
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Hello Flora,
I was interested to know that you were going to visit a Maggie's Centre near you. I do know about them because a few years ago two of my nieces did some kind of charity midnight walk for them in London and I sponsored them. I do not have experience of them as I do not know of one in Devon.
What we do have here in the grounds of the Royal Devon and Exeter Hospital, where I had my treatment, is a charity called FORCE. It is in a lovely house and not at all clinical. I went there quite early on in my diagnosis and found it very useful. All sorts of things are offered, from group counselling, one to one counselling, aromatherapy, or just to talk with someone and have a cup of tea. It is useful for patients and their carers. I still receive their newsletter. I made friends there with one of the nurses who had helped to set up FORCE. She took a liking to me and came to my chemotherapy and to see me in hospital. I was very lucky in that respect. My oncologist, Dr Annie Hong, is the patron of FORCE. Exeter Hospital has a good reputation and is allied to Exeter University and the Peninsula School of Medicine.
You mentioned that you are interested in Iscador (it comes from mistletoe). I am not sure what is happening with homoeopathic hospitals nowadays. There used to be just three, one in Bristol, one in London and one in Glasgow. I think they may have changed names now. I know that the consultant I saw in Bristol is no longer there and has gone into private practice. For the five years I took Iscador it was funded by the NHS and Bristol Hospital would send all my medication to me at my home address. I had regular appointments at that hospital, some at the hospital and some by phone. After five years the doctor thought I could be discharged. She did say that I was considered a successful case and asked to use my case anonymously in the lectures that she gave to medical students.
This thread of course is not an alternative one, but there are alternative threads on the bc forum and I do look at them from time to time. They seem very active.
As for London homoeopathic, I think it is called something else, but has homoeopathy in it. We do have another daughter on here posting on behalf of her mother and she is in London. She is called Sarah (LoveandLight) but we have not heard from her in a while. I hope she is still viewing and that her mum is doing alright as she goes through chemotherapy. Her mother was very reluctant to have the treatment as she was a great believer in homoeopathy. I know that they went to that hospital in London. I think it may be called the London Integrative Hospital.
It is good that your mum is changing to a more healthy diet. Try not to push her too much while she is going through treatment, which is very demanding.
On this thread we all believe in healthy eating and fruit and vegetables are very important. Is she drinking her green tea without milk? I was surprised to learn the other day that some people put milk in their green tea. I do not think this is a good idea. I do not touch milk and have not done so for a very long time, even before the cancer diagnosis. Apart from fruit and veg, I have nuts, seeds, beans and pulses. I usually alternate seeds throughout the week, to make sure I have a mixture of pumpkin seeds, sunflower seeds, linseeds, chia seeds, hemp seeds and sesame seeds. I usually grind them up and use them as a base for soy yoghurt and sprinkle some cinnamon on it. I buy Sojade organic soy plain unsweetened yoghurt at my natural food store or free from soy yoghurt, plain unsweetened enriched with calcium from my local Tesco store. Adding hummous and avocado to her sandwich options is a good thing. We are told that the mono-unsaturated fat from avocados is very healthy.
The most important thing, I believe is to steer clear of sugar, processed foods and junk food. I must say however this is what I believe but people will do as they like.
Please do not be nervous about about the appointment with the breast cancer surgeon tomorrow. Ask your questions with confidence and make sure you get an answer that you understand clearly with no difficult medical language. This is your mother's body and it is her right to have a clear understanding of everything.
I am sure everyone will appreciate your love and best wishes. Everyone at all stages of their treatment and post-treatment need all the support they can get.
Take care.
Sylvia xxxx
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Hello Sylvia, Maryna and everyone else.
I am doing OK - I do not think much about cancer these days because I am so, so busy with a house full of guests at various intervals throughout the summer months. However, it is good to read about people's experiences - I do not check in very often any more - simply because of time issues. But I do have to remind myself to take things a little slower and prevent myself from getting overtired. This is very difficult especially when feeding lots of people, and knowing that their ideas of food are so vastly different to mine!
I am at home all summer and then we are hoping for a break in September.
I hope everyone is managing to keep cool!
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