Calling all triple negative breast cancer patients in the UK
Comments
-
Hello adagio,
It was nice to hear from you and I understand what a busy summer you are having.
I do hope you will stay with us as we do need people who have got through their treatment to help others going through the shock of diagnosis and going through the trauma of treatment.
Wishing you all the very best.
Sylvia xxxx
0 -
Hi, Flora
I see that you are going through a new and unwanted experience, as you go through this cancer process with your mother. It's such a new world full of things that you never wanted to know, but you are in a good place here. As you already learned, Sylvia is a font of information, and shares all she knows. I welcome you too, and hope for good results for your mom.
There have been a lot of posts back and forth, from what I recall, you will accompany your mom to the Oncologist Wednesday, or yesterday. So there should have been some questions answered, I hope. I certainly hope your mom does not have metastatic cancer.
I hope also you can find help from the Homeopathic hospital or doc to help her through the chemo, it seemed to do Sylvia a lot of good to take the Iscador. I don't feel I have much wisdom to offer about chemo, it was hard on me and I just put my head down and got through it.
I also had mastectomy before chemo, I didn't know enough to question it then, now I see that most TNBC women have the chemo first. I don't think the MO I saw had seen many patients with TNBC, he anticipated (I suppose because of my age, 61) that I had ER+ (hormonal) BC, and seemed shocked when it wasn't.
Flora, my heart goes out to you and your mom. You can get through this however, I'm glad you have good doctors.
I will talk to you again soon, Mary
0 -
Hi Pam
I'm glad you brought up your evening with friends playing records! A couple of years ago my granddaughter wanted a turntable for Christmas. I didn't even know that turntables and records were back in style somewhat. My turntable and speakers are in one of my "storage" rooms, I put them away a few years back when technology came out with smaller ways of listening to music. But yes, it used to be so much fun, listening to records, then it was cassettes, then CDs. I can remember the last time I played a record on my turntable, it was "White Bird" by It's a Beautiful Day, I played it over and over. I love a rock band with a violin!
Your trip, and the pics you posted, sounds like it was just beyond words enjoyable! I'm so glad for you, and you definitely made me want to go there too. And have to repeat, the pics are amazing!
I have to go for now, but will talk to you again soon,
Love, Mary
0 -
White Bird, from 1969
0 -
HI, Sylvia
I will be back later to respond to your latest post and other things. I need to get outside and do chores before the heat settles in again. Mary
0 -
HI, Sylvia
You have been busy giving Flora much-needed support, I hope she and her mother have had some questions answered by the docs by now.
I was reading one of your posts where you referenced a clinic called FORCE. It sounds wonderful, and there is nothing like that here where I am. Of course, I got my treatment in a much smaller city. I even had trouble finding group counseling, the Cancer Clinic where I treated had one meeting a week for people in similar situations to me. Later I found another one that met once a week but for some reason it just made me feel worse. That is how I found this one that you started, and it is always open and full of information and people who know exactly what I was/am going through. I think the FORCE clinic sounds wonderful and welcoming for someone who needs it. I am not familiar with a Maggie Center either, it must just be a thing in the UK, I would have been glad to see such a place.
I have heard on the radio that there are now a couple of homeopathic docs practicing in our local city. That is something new. There is also a doctor who advertises this: you pay her a fixed amount each year and she is always available to you, and your visits to her will last as long as necessary. She answers the phone herself, and for this fixed amount you can see her as often as you like in that year. She can order tests, drugs, and scans and you will still have insurance that will pay for that, she must be paid in cash. I have heard her on the radio and she sounds very intelligent, and very pleasant. I must say it would be refreshing to have a doc visit and have the doc actually listen to me instead of standing by the door with one hand on the doorknob.
I must go again, I am having lunch with a friend. We have a new restaurant in the nearby city, it is Vietnamese and we are curious.
Talk to you again soon, love Mary
PS The hebes are beautiful! I didn't know they came in so many colors! Thanks for the pics.
0 -
We have a Maggie's Centre at Charing Cross and I know many cancer patients find them a great source of support and comfort. It's in its own building in the hospital grounds, tucked away privately. You can just sit down there with a cup of coffee and a book, chat to people or not as you want, or attend a relaxation session, and there are groups for different types of cancer though I haven't been to the one for Primary Breast. Then there are drop-ins for young patients -- a pretty full programme five days a week.
They began with a (?Scottish) woman called Maggie who died of breast cancer a few years ago. While she as dying, she worked with the hospital and doctors to try to create a new -- less clinical -- sort of support for both patients and families. Those bereaved by cancer can also access support there.
For people who don't live near one, an online version is available.
0 -
Hello Everyone,
Mary, Thanks so much for posting the link. Music can be so therapeutic. I actually forgot how to work a turntable, but I'm enjoying it again now. There was really something to having tangible items, like newspapers and records. Everything is more convenient now, but just a little less special.
Sylvia, I enjoyed reading about FORCE. What a wonderful thing to see about the emotional health of cancer patients. It sounds like it offers an in-person community.
We are not big football/soccer fans, but can be really interesting to watch the World Cup in another country. We were able to watch Colombia play Japan in 2014, while we were in Tokyo. It was a fantastic experience. And as you know, England defeated Colombia last week. I think it's fun, but then again, it's not a huge part of the culture here.
Susie, Maggie's Centre sounds like a wonderful resource too. It's so nice to see women here who are actually from the UK. Your chemo treatment will be behind you before you know it.
Pam
0 -
Dear all-Sylvia, Susie, Mary, Pam and others,
Following your helpful support in the last few weeks, I thought I'd sum up our experience yesterday. We've certainly got some thinking to do - we've got some real dilemmas as a result of everything they said!
The good news for us was that my mother had been misled/misheard about the "metastatic" part of the triple negative diagnosis. There is no current indication that the cancer has metastasised. The tumour was 2cm (originally they said "over 3") and it has not spread to her lymph nodes. It also has one marker -progesterone-that is weakly positive-3-4 out of 8.
I say the above being aware that some people do hear at their appointments that the cancer has spread to lymph nodes or, more seriously, metastasised- I don't want to be seen to "crow" too much about the "relatively" good news but want to say to those people how difficult it must be to hear such things-things we were fully expecting to hear. Also, since I had been prepared for hearing it had metastasised and had read up on it, let me say once again that I do hear of people living for a long time with metastatic TNBC these days.
Anyway, the new thing that is difficult for us is that the surgeon doesn't want my mother to have chemotherapy because she is 73 and they are reluctant to give it to anyone over 70. I am worried about this because I know chemotherapy is all they can give TNBC (which her tumour is still very much classed as) and almost everyone I have come across on these forums has had it-and many seem to have done very well.
She said this decision was partly made because the tumour is not too big and has not spread to the lymph - but I see that all the younger people I've come across with this sort of tumour have had chemo. I have also seen that people with small tumours with no spread do experience recurrence, maybe not quite as much as people with more challenging tumours, but still quite a lot.
She has also raised the possibility of putting my mother on hormone tables because of the weakly positive progesterone marker, but has said the oncologists with whom she discussed this thought it probably wouldn't really be of much benefit and she would likely suffer side effects to little avail.
So, some questions answered, but more raised..
Does anyone know of anyone with TBNC over 70 who had chemo?
Did anyone else have a weakly positive progesterone score?
In other news, I visited Maggie's and, much as Susie described the one in Charing Cross, found it a lovely, gentle, relaxing place, in which it feels completely "normal" to have cancer! The Oxford one is a wooden-clad building up on stilts, so that the rooms look out onto the tree tops and you feel like you're sitting on the tree canopy. I will definitely be visiting again. I came out feeling much calmer about everything going on, and elevated by how nice everyone was to me!
Thanks as ever to all reading this and going through this. What a minefield it is!
We're off to Guy's Hospital tomorrow to get a second opinion from an oncologist there.
Flora x
0 -
I'm so happy that there is no sign of metastasis in your mother's cancer, Fiona.
I'm 63 and, looking round the chemo day unit every time I visit, I don't see many people who look over 70, but can't help feeling that chemo for 70+s must be common enough. Your oncologist may simple consider that the downside outweighs the advantages given that there was nothing in the lymph nodes. Presumably, they are offering radiotherapy, which, as I understand it, will prevent any such spread.
Your mum's case sounds very much like one where a second opinion will be invaluable.
I can't offer any insights other than what my own oncologist told me, which was that having chemo would add 10% to my 10-year-survival chance, but then there were a few cells in one of my lymph nodes. To me, this says that the difference is not huge but big enough for me reluctantly to agree to chemo and I'm glad I did as it hasn't been anything like as bad as my fevered imagination suggested.
0 -
Hello Flora,
Thank you for your post and for letting us know how you and your mother got on yesterday.
I was so glad to know that you had a lot of good news and that you now have some facts.
It is good news that the tumour is relatively small and that there is no spread to the lymph nodes. You mentioned about the weakly positive progesterone. I can tell you that when I was diagnosed with the triple negative receptors that I was told my progesterone was 5% and I was told that this number was negligible. If that were me I would not want to take any anti-hormonal medication. These medications have nasty side effects, but of course only your mother can make that decision.
As for what the breast cancer surgeon said about chemotherapy and that he does not want your mother to have it because she is 73 and they are reluctant to give it to anyone over 70, it is difficult to know what to say. It is true that the older you are the weaker your immune system probably is and it may be more difficult to tolerate the side effects. It seems to me that when it comes to chemotherapy and indeed radiotherapy, should the oncologist not be involved with such a decision? Has there
been any mention of radiotherapy? There are lots of patients who just have surgery and radiotherapy.
I get the impression that, as time goes on, it could be that the consultants are trying to get patients through their cancer with the minimum treatment for the best results. If you can get a patient into no evidence of disease (NED) without months of chemotherapy, it must be all to the good.
Ultimately, I think it is your mother who should make the decision and it is about whether she feels strongly that she wants it or strongly that she does not. There are all sorts of side effects to chemotherapy drugs, including hair loss, peripheral neuropathy of the hands and feet, especially with taxane drugs and lymphoedema also from taxane drugs, but radiotherapy can also cause lymphoedema.
Let us hope that someone over 70 will post in to say they had chemotherapy but really it is best not to compare one patient with another.
I would think a lot of your mother's decision would be based on the state of her health at the moment and whether she has any serious chronic conditions that might be a negative thing for chemotherapy. Remember some, if not all, chemotherapy drugs affect the heart.
I was glad to know that you enjoyed your visit to the Maggie's centre. Places like these are so very useful for patients and carers during treatment. I enjoyed my visits to the FORCE charity and my husband, Raymond, enjoyed them too. He had an Indian head massage there, as well as reflexology. He found them relaxing.
I also had visits at home from Hospiscare nurses and I used to enjoy our chats together. Raymond used to go to the Hospiscare centre in Exmouth to meetings for the carers of patients. We also got invited to a meeting of patients and carers together and had a question and answer session. We are lucky to have these charities and must not forget MacMillian nurses and others.
I do hope all goes well tomorrow when you go to Guy's Hospital for a second opinion. Remember that you and your mother are in charge of everything.
That is about all for today. Take everything calmly and one day at a time. Everything is so stressful in the beginning, but things do get better.
Fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your recent post.
I very much appreciated FORCE when I was going through treatment. It was somewhere to go that did not look at all like a hospital. I felt very strange in a hospital setting as I had never been ill. I do remember how awful I felt that first time I walked into that big ward where all the patients were having chemotherapy. I could not believe it had become part of my world.
I was interested to know that you are going to have a couple of homoeopathic doctors practising in your local city. What is your local city? I like to pinpoint you on the map when I watch the world weather forecast on TV5 in French, or France24 news (in English). Do you think you will pay a visit to the homoeopathic doctors?
I found the appointments I had with that homoeopathic doctor in Bristol very interesting and very useful. Sometimes the appointments were 45 minutes and I really felt the doctor got to know me. I have just discovered that she is no practising in a private clinic in Bristol. Strangely enough, it is the same clinic where I had one consultation with a private nutritionist for an hour. It was through her that I learned about the bitter apricot kernels.
I was glad to know you liked the hebes. They are very useful shrubs to have and do attract bees and butterflies.
I am still researching all about varicose veins as I realise the way have been treated in the past seems wrong. If you Google "minimally invasive endovenous treatment" you will find lots of information and this new treatment has been available for sometime, but probably only privately. It is one of those treatments where you can walk in and out of a clinic or surgery quite quickly. I can not understand why orthodox medicine cannot realise that varicose veins are not a disease in themselves. They are a symptom of an underlying problem of venous reflux, where valves in the vein are not functioning properly and blood is going down into the ankles and feet, causing inflammation, staining and eventually ulcers.
When I decide to get to the bottom of something, I am like a dog with a bone.
Thank you for posting the video and I shall try to listen later on. I seem to be forever chasing time.
I have not seen anything lately from Chris Woollams of Cancer Active, but I did have an email from Ty Bollinger but I have not had time to look at it.
I have spent hours this morning watering the grounds here. The rain will just not come. There is a lot going on with Brexit seemingly being betrayed, Donald Trump here for a short visit, not to mention more so-called Novichok poisoning. Despite all the boasting, England has not made it to the final of the World Cup, so it is NOT coming home after all!
That is about all for today, Mary. I do hope I have not forgotten anything, but if I have please let me know. Many of our group have not posted in a while. I am wondering about Kath and CocoonCat in Australia as I heard on the news that Melbourne was experiencing record cold weather.
Love.
Sylvia xxxx
0 -
Hello everyone,
Here are a few more photographs from the grounds here. The first shrubs are flowering deciduous ones, the name of which escapes me for the moment, but I think it is Spirea. The rose is a Peace rose just about to bloom. It is my favourite rose.
Wishing you all a good weekend and hoping to hear from those who have not posted in a while.
Best wishes.
Sylvia xxxx
More geraniums
Peace rose bud
0 -
Hi Sylvia,
What beautiful grounds! I love all the pictures you posted of the flowers.
I have not been posting although I did catch up on reading through the thread this morning.I appreciate all the inspiring women here and how you respond so eloquently to each of us. I will read a post from someone newly diagnosed or recently in treatment asking questions and think “I wonder if....” or “maybe...” and then you will respond to them with many of the things I was thinking. But you word it so much better than I could! So, thank you!
I am now 3 weeks post final chemo,and still having many side effects that I thought (hoped) would be gone by now. Especially the neuropathy in my feet and hands. Besides the gabapentin, it seems not much can be done. I did meet with a physical therapist yesterday, who measured both arms for lymphedema comparison. She explained that I was currently at a “stage 0” (no lymphedema ‘yet’). She gave me stretches and exercises and things to watch for. I asked about radiation (which should start in the next couple weeks). She told me what I already knew. That radiation can cause lymphedema. But that I could develop it anyway. More likely in next 3 years, then chances diminish significantly after, but I still have about a 15% chance of developing lymphedema after 3 years. She is holding a class on lymphedema on July 26th that I will be attending. I am interested in learning more about the lymphatic system. I will let you know what I learn.
I’d better stop here. I have yet another appointment today. I seem to be busier now that I am done with treatment than I was during chemo!
Take care, everyone, and have a great weekend.
Monica
0 -
HI, Sylvia
The bushes do look like spirea, I have 3 of them and your pics reminded me I need to water them this morning. Our hot, dry weather continues with a chance of a little rain today. The peace lily is beautiful, one of my favorites too. I had one but it died, I have trouble with hybrid teas, I only have one beautiful yellow shrub rose, and it has been under constant attack by Japanese beetles. I also love the ease of geraniums, they are beautiful and very hardy in the summer heat, and bugs don't seem to like them.
Talk more later, love, Mary
0 -
Hello Monica,
Thank you for your post. I was glad to know you enjoyed the photographs of the flowers.
It is good to know that you have caught up on reading the posts. I am glad to know that you find them useful.
Never be hesitant about posting and saying what you think, even if you feel that someone has already answered questions posed. All views are helpful and contribute to make the thread what it is. Two heads are always better than one.
It does take a very long time to recover from chemotherapy treatment and with your being just three weeks from your final chemotherapy you will be bound to be suffering from side effects. Your body has been flooded with very toxic drugs.
With reference to the peripheral neuropathy in the feet and hands, I fear that it will take a very long time for that to become tolerable and the information I have is that there is no cure. The nerves have been damaged. I am over thirteen years since diagnosis and a year less since I finished chemotherapy and I still have peripheral neuropathy in the feet. Mine does not bother me too much and it is a feeling of numbness and stiffness rather than pain. My oncologist, two podiatrists and my GP have all said there is no cure. From time to time I have my podiatrist test the feeling in my feet by prodding them with a needle while I keep my eyes closed. I feel absolutely nothing. The soles of my feet always feel as though they are very dry when, in fact they are well moisturised. I have not had this neuropathy in the hands.
I do hope if anyone has heard differently about neuropathy that they will post in and let us know. We need to keep the thread up to date and any new information needs to go into it.
I am very interested in all aspects of lymphoedema and feel that the best person to see is a lymphoedema specialist and for information a patient can do no better than read the most up to date book on it by a man who has devoted his career to it. The book is Let's Talk Lymphoedema – The essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine.
A lymphoedema specialist does much more than measure the arm and compare it to the good one. They do measure it but in very many places along the arm but they do a percentage of the arm affected. They also feel the arm to check the weight because it can become heavy because of the imbalance of fluid. They also weigh you because lymphoedema can make you put on weight because again of the imbalance of fluid due to a damaged lymph system. They show you the exercises to do to try to keep the lymph flowing and also how to do manual lymph massage.
All three breast cancer treatments can cause lymphoedema, be it surgery, chemotherapy or radiotherapy and it can come on at any time. Taxanes are the ones that I have been told cause lymphoedema. Incidentally taxanes are also the ones that cause neuropathy.
I must admit that the lymphoedema specialists have never mentioned stages to me and have never said that chances diminish after a certain number of years. I cannot really explain clearly what happened to me last year. all I can say is that my arm became swollen a few days after I had a flu injection in the other arm, the first injection in twelve years. I had a little lymphoedema just after I finished my treatment in 2006, but it did not amount to anything.
You probably know that you should not have any injections or have blood pressure taken in the affected arm.
The specialist also look at the affected arm because the skin has a certain look that it takes on because of the lymphoedema. They also look at it to make sure there is no infection because with lymphoedema you can get cellulitis which needs treatment with antibiotics.
Finally, I have read that lymphoedema can make your blood pressure go up.
You can see from all this that lymphoedema is no picnic and seems to be quite common and to have been dismissed for quite some time. GPs here, apparently, know very little about it.
I do hope we can all learn a lot more about lymphoedema when you have your class on July 26th.
I did post a diagram of the lymph system some time ago this year but I shall try to post another one. The lymph system is the cleansing system of the body and it is quite difficult when this cleansing system is impaired.
I do hope all will go well with you and that radiotherapy will start soon and then your treatment will be finished.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
0 -
Hello Mary,
I was so glad to read that you liked the shrubs. They are indeed spireas. I planted some of them in my garden in Canada. I also had Bridal-wreath spireas there.
The thread has gone quiet again with quite a few of our group not posting. There is still no news of Marias.
Have a good weekend.
Love.
Sylvia xxxx
0 -
Flora
I am glad you are having a second opinion, it seems to me that giving or not giving treatment to a patient would be determined on an individual basis. I posted the following link which refers to this subject.
https://www.oncnursingnews.com/publications/oncolo...
Mary
0 -
Hello to everyone- in particular Sylvia, Mary, Susie and Monica, who have all recently posted on this thread.
Thank you once again for everyone's helpful comments, links and feedback. I found the article on the elderly and chemotherapy interesting, Mary.
I thought I'd update you on where we are with my mother's diagnosis.
Following our appointment with the Oxford surgeon(who was pretty much recommending no treatment), we got a second opinion from Dr Mark Harries, a consultant oncologist at Guy's in London.
We came out with a rather different picture.
His view was that, although my mother's cancer was small and had not spread to the lymph nodes, TNBC is an aggressive cancer (as we all know) and it is really best to throw everything one can at it at the stage to reduce the risk of it returning and spreading -since it becomes more "tricky" then. (Nevertheless he did say that, for Stage 4 TNBC, there have been some promising findings recently- using immunotherapy and some kind of drug that turns off a molecular switch).
His view was that, since she is a generally fit and healthy 73 year old, he would definitely advise chemo. He said that, if it was his own mother at 73, he would recommend it.
He also implied that he felt Oxford were being rather "leisurely" in their treatment of my mother -the next appointment with the oncologist isn't for 3 weeks-and he thought that, if she was going to have chemo, the sooner the better.
So we've now make a private appointment with one of the Oxford oncologists to try to speed things up. We're seeing her tomorrow.
Dr Harries also said he would advise taking biophosphanate (spelling?), a drug relating to the bones, which has recently been shown to lower the risk of breast cancer returning in all breast cancers by 1-2%. He said it is well tolerated, and, taken together with chemo, would reduce the chances of recurrence by almost 10%. Is anyone else on this? If not, it might be worth asking about it?
So we are now assuming that chemo will happen and tying to steel ourselves for that.
More following our private appointment with the Oxford oncologist tomorrow...
We have all enjoyed a weekend "off" thinking about cancer following the emotional rollercoaster last week! The wonderful sporting events on TV were a good distraction, and the weather continues to be amazing here.
If anyone reading this lives in London, I would really recommend Dr Harries - who managed to strike just the right balance between being "clinical" and "human".
Hope you're all well and that those going through chemo are able to find small things to look forward to get them through the days.
Flora
0 -
hi everyone
Great to see every everyone doing well. We remain in a very cold winter which is a bit depressing so I'm try to keep as busy as possible! Really enjoyed Pink in Adelaide last week and spent lots of quality time with my grandsons. My daughter is also expecting again at the end of January which is exciting
I passed my two year mark on July 8 th and my oncologist doesn't want to see me until January. My second mammogram is coming up in September and is a terrifying thought. My mind still goes to those dark places so I'm try to keep as busy as possible. Uni starts again next week so I'm looking forward to that.
I've enclosed a clever pic my daughter took of Mundi Mundi plain just outside Broken Hill which featured in the second Mad Max movie. Have a great week everyone
Much love
Kat
0 -
0 -
Hi Flora,
It sounds like you had a very informative meeting with Dr. Harries. And he seems like a gem. Giving you facts and his professional opinion in a warm and gentle way.
And his advice was very similar to what my oncologist said. Although I am a bit younger than your mother (60 years old), my dx is similar. Small tumor. No lymph node involvement. I had a lumpectomy in January and had a very aggressive chemo treatment that lasted 5 months. Although it was rough, with some side effects, I tolerated chemo fairly well and my blood tests were always good. The best advice I received was to drink lots of water (stay hydrated), excercise when possible (take walks) And get plenty of rest.
Also, having friends and family support was invaluable. I never went to a doctor appointment or infusion appointment by myself and had most meals prepared for me. All of my energy was focused on recovery. Your mother is very fortunate to have you and your brother for support.
I was interested to learn Dr. Harries recommended biophosphanate for your mother. I had never heard of that drug so I did a little research. I read a couple of case studies that involved women that were er+ and posts on this site from women who were taking an oral form of the drug. The small amount of research I did was interesting and I will have to read more.
I will be thinking about you and your mother today as you have your appointment with the Oxford oncologist. Let us know how it goes.
Monica
0 -
Hello Flora,
Thank you for your post and letting us know how you and your mother got on with the other consultant oncologist. I am not at all surprised that you came out with a different and conflicting opinion. This is nothing new and you get exactly the same from two different GPs.
From all that you have told us, I am not sure whether you have told us what kind of breast cancer your mother has. If you have mentioned in an earlier post, please forgive me if I have not retained that information. It would be helpful if you could put the details so that it appears at the end of each of your posts, so that we all have some kind of reference.
I think, if I were in your mother's position, I would need to give the chemotherapy option some careful thought. I think I would want to know exactly what chemotherapy regime I am going to have, for how long and whether it would be weekly or three-weekly. All the chemotherapy drugs are toxic and take a big toll on a person's body and may leave them with long term side effects.
Since you have now got two conflicting opinions, who is going to be treating your mother if she chooses the chemotherapy? Are you going to want your treatment in Oxford?
I do hope something positive comes from one of the oncologists in Oxford and that you do not end up in a state of confusion.
If you have made up your mind or rather your mother has made up her mind, it might be prudent to get a bone density scan (DEXA scan) to ascertain the state of her bones before she starts chemotherapy treatment, because chemotherapy does affect the bones and she can end up with osteopenia or osteoporosis. After treatment she should get the same DEXA scan in order to know what has happened to her bones.
As for bisphosphonates, I can only say what I was told by my breast cancer consultant, who said they were nasty drugs and to stay away from them. The oncologist asked if I wanted to take them to help with the osteoporosis that the chemotherapy had caused. I said I did not want to take them. The medical homoeopathic breast cancer consultant also told me not to take them and that they were largely being used with metastatic breast cancer patients and that they had nasty side effects. I have a friend who was kept on them for seven years and had problems with her jaw bone. Bisphosphonates can cause necrosis of the jaw. She has also had trouble with brittle bones and quite a few falls. Bisphosphonates are not new.
I get the impression that the oncologist you saw threw a lot at you considering that your mother is a newly diagnosed patient.
In all of this you have not mentioned radiotherapy. I know quite a few people here who had a smallish tumour and just had surgery and radiotherapy.
Ultimately your mother will have to make the decision that most suits her but I think it is important not to go rushing and to be comfortable with the decision you made. I delayed a lot before feeling comfortable about making my decision to go ahead with the treatment and I am still alive to tell the tale.
Wishing your mother good luck tomorrow.
Let us know what regimen of drugs they propose. I get the feeling that you have already made up your mind about the chemotherapy.
Best wishes.
Sylvia xxxx
0 -
Hello Flora,
I do agree with Monica about the importance of keeping very hydrated, of resting when you need it and also trying to keep physically active. I was given this advice by a very experienced friend of mine, a nurse of many years.
I also agree that support from family and friends is very important. My husband, Raymond, was with me throughout my six months of chemotherapy and was by my side for all appointments for the ten years that I was with the hospital.
I kept a positive attitude all through treatment and ignored all doom and gloom about breast cancer and did my own thing with regard to treatment, nutrition and what I would and would not do and accept.
We are all different and although I had no problems throughout chemotherapy or any part of my treatment, I know from all the time I have been on this thread that it was a very different story for many women.
Best wishes.
Sylvia xxxx
0 -
Hello Mary,
I thought you might be interested in the following website.
This is a medical centre in Bristol 80 miles from here. You might like to read, out of interest, about the medical cancer consultant in homoeopathy, Dr Elizabeth Thompson, whom I saw back in 2005. She was working in the NHS then but I see now she is in private practice. Also there is the nutritionist I saw privately, Dr Nicola Hembry, back in 2005.
You might also be interested in Professor Mark Whiteley who is down as a consultant there and also the Whiteley Clinic.
I found reading all this very interesting. Mark Whiteley is the author of the book Understanding venous reflux.
I was interested to read about the new treatments mentioned there for varicose veins, radio-frequency, endovenous laser treatment, foam scleropathy.
I am still pursuing this condition of venous reflux, venous eczema, and venous ulcers – the manifestation of which is varicose veins.
I have also been doing quite a bit of thinking about breast cancer, because I keep seeing people on the threads emphasising that non-hormonal breast cancer is very aggressive and I have been wondering where this has come from.
When I was diagnosed and going through treatment nobody ever used the word aggressive to me. I was told the type of cancer I had, invasive ductal carcinoma (IDC). The type of cancer one has now seems to have been a bit lost and the whole emphasis is on the receptor status – negative in oestrogen, progesterone and HER2. It is as though to be negative is separate almost from the rest of breast cancer.
All I was told was that because of being non-hormonal the anti hormonal drugs, tamoxifen and aromatase inhibitors would be of no use. To me as I learned more from women on these drugs for five to ten years, with all the side effects, I was glad that they were of no use to me.
I have a few things to do now. It is not so hot but the great expectation of a lot of rain did not happen here today, but I gather they had a lot of rain in Cornwall. We had a pathetic little downpour and that was that!
I am hoping for a bit of sanity in this country now. The weather has cooled, the World Cup and Wimbledon are over but unfortunately we are left with the mess that the government has made over Brexit and all the bad behaviour shown against the President of the US. I wonder how we would feel if our head of state was treated in such a way!
My thought for today is: What kind of country are we when with 65 million residents, 134 are billionaires. Their combined wealth equals £658 billion. How can this be acceptable and what on earth do they want with all that money?
I do hope the week is beginning well with you and look forward to hearing from you.
Love.
Sylvia xxxx
0 -
Hi Sylvia and all,
How r u all? It's been around two years since i last checked in on this website. We moved to a new house and eversince we've had no internet. I just used a limited time of free wifi like right now while we are on malls. We applied for home internet about a month ago, we were given the modem and phone but up to now, there is no internet connection yet.
I will try to update myself with you all as soon as we get connected.
Sylvia, just a brief update on me, my bc has recurred on the same right breast even after mastectomy. The tumor grew on the chest wall to about 3.2 cm with a lymph node to about 3.8 cm. The biopsy said recurrence and metastasis although mets to orher parts of the body has to be ruled out by ct scan of chest and abdomen which im going to get this week.
Sylvia, you were right in about everything you said about radiotheraphy and Tamoxifen. I didnt have RT after my chemo coz thats what my former onc said. Now i have a different onc and surgeon looking out for me. Depending on results of my ct scan, they will determine what course of action to take.
This is it for now, free wifi here is only about an hour. Talk to ypu again soon. Its so nice to see most of the usual members still coming in your thread.
Love you all friends.
Gina
0 -
So pleased to hear that your mother will be getting the best treatment, Flora. After all, 73 is nothing these days and many women that age are generally fit and healthy. It's as well to be prepared for anything with chemo but don't assume that it'll be horrific. A friend who is a retired doctor said it would be 'gruelling' but I have been pleasantly surprised that I have been able to live a more or less normal life since starting in April (less than a month to go!). In fact, for the first few weeks I was doing more than usual -- getting to plays and exhibitions as soon as they opened in case I felt more ill later on.
Do ask about Filgrastim, which is a drug I'm injecting myself with each cycle, which helps maintain the immune system. If it isn't offered, then ask why!
0 -
Hello Gina,
What a lovely surprise when I looked at the thread this morning to find a post from you. We have missed you on the thread and I have often wondered how you were getting on in the Philippines. I do hope you will not have to wait much longer to get your internet connection.
Thank you for updating us on what has been happening to you.
I was so very sorry to read that you have had a recurrence on the same right breast, and as you say, this has happened even after a mastectomy. I am afraid that with this awful disease there are no guarantees. Even after over thirteen years since diagnosis, and having had, like you, a mastectomy of the right breast, I still cannot take anything for granted. I do hope you will get some quick treatment and that everything will be alright.
With reference to chemotherapy, there is still no guarantee. It is a systemic treatment and so goes to all parts of the body and yet it cannot give us peace of mind and the cancer can dodge it and be hiding somewhere, especially with stem cells.
As for radiotherapy, it does have side effects, and I was told it is done to mop up any stray cells, but does it really find them? Who knows? Everything about our breast cancer and its treatment is very complicated.
When it comes to our oncologists it seems that they will all have different opinions about treatment. Your oncologist obviously thought you did not need treatment, but I wonder what that opinion was based on. Ultimately I think the patient needs to make the decision about what treatment they feel they want to have.
I do hope you will have a good relationship with a different oncologist and breast cancer surgeon.
I get the impression that your consultants are not sure about the metastases and I do hope the scans will find that the cancer has not spread to other parts of the body.
Please try to keep in touch with us and let us all know what your results are and what treatment you will have. You know that we shall support you.
I am sure that Mary and adagio will remember you and will welcome you back. Things move along pretty quickly here, so I am not sure who of the others will remember you. We have Mary, Pam, Val and Monica from the US, adagio and 53Nancy from Canada, Kath and CocoonCat from Australia, Susie and Flora from the UK, Hanieh from Iran, Marias from Colombia and Jags and Sid from India.
How are your family? I seem to remember you have a little boy.
That is all for today. Take care and be positive.
Love.
Sylvia xxxx
0 -
Hello Kath,
Thank you for your post and for that really clever photograph.
I have been hearing about the cold weather in Australia and I can understand how it makes you feel. It seems that we are in a period of extreme weather. We have had unusually hot weather and dry as well. We desperately need rain and now there is talk of hosepipe bans.
It is good to know that you get a lot of joy from your grandson and now you have a new baby to whom you can look forward.
Congratulations on your two years since diagnosis and remaining in the clear. Get on with your life now and do not worry about next January. Always remember that the check ups are there to keep an eye on you and help you. Remember it is the same for mammograms, so do not be afraid.
What will you be studying at the university when it starts again next week?
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
0 -
Dear all,
Hello to Gina-we haven't "met' before. I am the daughter of a mother recently diagnosed with TNBC (IDC) 2 cm and no nodal involvement and so grateful for the internet and forums like this. I'm so sorry that you have experienced a recurrence recently. I do hope it turns out to be contained in the lymph nodes at least. If it has spread, the doctor we saw recently (Dr Harries at Guy's, London) said there have been two recent findings that are encouraging for metastatic TNBC. If it was any help, I could try and email him to find out exactly what they were.
Cancer-particularly a relatively rare type like TNBC can be very isolating, and it is just so helpful to connect with other people going through a similar journey, and really rather amazing that women from USA/Australia/Malta/UK (and I'm sure many other places) can all compare treatments and advice.
Sylvia, thank you as ever for all your wise words. Although I do feel that Dr Harries threw a lot of information at us, he did so in a way that didn't feel completely overwhelming. Some doctors have this "gift" and some don't.
Inevitably there were still questions I forgot to ask- like about radiotherapy. This hasn't yet been mentioned for my mother-I think because her lymph nodes were clear, but I'm not entirely sure. I must remember to ask at this evening's appointment with Dr Lavery -we're back in Oxford now and this is a consultant that Mr Harries recommended.
The other questions I forgot to ask were about metformin and aspirin to reduce recurrence. I know there were threads on these a while back, but these drugs don't seem to have been mentioned in the conversations recently. I understand that the "Add-aspirin" for cancer trial is still on going so I guess there are no definitive answers yet.
If I do hear anything useful, I will of course disseminate this information on the thread.
Sylvia, would you recommend the nutritionist you saw at Bristol? There is obviously so much information on the internet re: nutrition and cancer. I have assimilated as much as I can, and given my mother a few suggestions (green tea, turmeric, blueberries, upping her fruit and veg intake particularly broccoli/cabbage/onions/garlic) but do feel rather swamped. I thought it might be a good idea to visit a reputable nutritionist to check out what we're doing...
re: biophosphanates. It is interesting what you say about side effects, Sylvia, and clearly the ones that can happen are nasty. Dr Harries was really quite confident in his suggestion of taking these. I understood that, in his practice, it is becoming standard treatment in post-menopausal women with TNBC to take these. He did mention they have been used for a while in women with metastatic bone cancer, but said that, recently,there has been compelling evidence they work in all sub-types of bc to ward off recurrence and prolong survival . As I said earlier, he did say their effect is small but significant, improving you chances by about 2%. Clearly, we would need to have a really good conversation with the dentist if considering taking these.
Today, we are going for our third consultation in a week, with an Oxford breast oncologist. The main issue we are going to try to thrash out is my mother's suitability for chemo, being 73. At the moment both my mother and I feel that , since chemo gives her the best chance of survival, we should probably at least give it a try. And, if it's too hard to tolerate, we stop. Dr Harries did say that she could start with the slightly less aggressive drugs (AC?) before going onto the Taxane, which are likely to be the hardest to tolerate.
To be honest, I still feel exhausted by the emotional rollercoaster of the last three weeks, and by trying to keep on top of everything for my mum (plus the needs of 4 under-10s!) I am just trying to put one foot in front of the other really. I suffered from terrible ante-natal depression when pregnant with my twins (now 5) and worry about all this dragging me down again. At the moment, though, I think I just feel "normally" tired and anxious, as anyone would in this situation, and I do find the children keep me going - and that there are still little things to look forward to in the day.
How has anyone else dealt psychologically with the emotional rollercoaster that comes with a cancer diagnosis?
What is everyone doing with their days? My children have their sports day at school so I'm popping in to see that. I'm off to the library in our local park to pick up some books I've reserved (I still get ridiculously excited by doing this!) We have a lovely 18 year old girl coming to help with the children tonight so that I can accompany my mother to the appointment so that's a great help.
Thank you all for "listening" . I will feed back after the appointment as any info that we receive is hopefully useful for the community at large to hear.
I have tried to add a "signature" with my mother's details but not sure if it has worked.
Flora x
0
