Calling all triple negative breast cancer patients in the UK
Comments
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Hello Marias,
Thank you for your post. I was sorry to read that you are feeling sad today. If I am reading correctly what you said, you have had papillary carcinoma in your thyroid and you now know that you have three positive lymph nodes. I am not sure if I have understood this correctly.
I am thinking about breast cancer and how they remove lymph nodes with surgery to find out how many are positive.
You mentioned the word metastatic. Have your doctors used this word?
My understanding of metastatic with breast cancer, for example, is used when cancer cells from the breast have spread to a completely different organ or place in the body.
It is good that you are going to see your endocrinologist today. You must ask for a clear explanation of what you have and how they are going to treat it.
I am thinking of you and hope all goes well.
Abrazos
Sylvia xxxx
I have put all this post into Spanish for you so that you can understand it all.
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Hola Marías,
Gracias por tu publicación. Lamenté leer que hoy te sientes triste. Si estoy leyendo correctamente lo que dijo, ha tenido carcinoma papilar en la tiroides y ahora sabe que tiene tres ganglios linfáticos positivos. No estoy seguro de haber entendido esto correctamente.
Estoy pensando en el cáncer de mama y cómo extirpan los ganglios linfáticos con cirugía para descubrir cuántos son positivos.
Usted mencionó la palabra metastático. ¿Sus médicos usaron esta palabra?
Mi comprensión de la metástasis con cáncer de mama, por ejemplo, se usa cuando las células cancerosas del seno se han diseminado a un órgano o lugar completamente diferente en el cuerpo.
Es bueno que veas a tu endocrinólogo hoy. Debe pedir una explicación clara de lo que tiene y cómo lo van a tratar.
Estoy pensando en ti y espero que todo vaya bien.
Abrazos
Sylvia xxxx
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Hello Mary,
Thank you for two posts, which I shall answer tomorrow. It is nearly 6 pm here today and it has been another busy day. There are lots of interesting points to comment on in your two posts and I want to do them justice.
There are many other causes of breast cancer and they could go back to our birth, childhood etc. We should definitely not blame ourselves. Remember, also, that cancer cells mutate and that although we ended up with a diagnosis of triple negative receptor status, our cancer may not have started as such. I shall write more tomorrow.
Talk soon.
Love.
Sylvia xxxx
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Hi, Hanieh
You look well and so pretty in your pics, and I see you are back at work already. I didn't think the mastectomy surgery itself was hard to recover from, but it's a mental challenge at times, and still sometimes surprises me when I look in the mirror.
Have you heard anything about the prognosis yet? I have gotten a little behind in the posts, so I apologize if I am asking too soon.
Do they have you doing a lot of stretching exercises? That was one of the first things I was told after coming out of surgery, a nurse came and told me about the various stretches.
Take care of yourself, and I will talk to you again soon, love,
Mary
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HI, Pam
I did the American thing mid-day yesterday and ate a huge plate of food, followed by pie! Didn't eat again till this morning.
In your last post you mentioned The Last Bookstore in LA. I looked it up, and I have since talked to my sis-in-law about maybe going to LA this winter sometime. Neither of us have been there, we could do the touristy thing and see Grauman's and movie-star homes etc. We have another friend who has a cousin who works on one of the movie lots, apparently she has taken her sight-seeing before out there. We'll see if anything comes of it, but if we go I will definitely go to the bookstore!
I also give many thanks for all the friends here who give me support along the way, I appreciate you and all the others too.
Love, Mary
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Hi !
Happy Thanksgiving to all the lovely ladies in the U.S
Hanieh - Im so happy your surgery went well, mashallah you look fabulous! the fact you are up and back to work is so amazing
its also a good distraction, teaching is very rewarding.Sylvia - I hope you are doing well ! Apologies for the late reply it has been a manic few weeks. Have you thought of doing Cranio Sacral Therapy? I know its not the same but my father suffers from chronic pain and chronic insomnia, and he had a good few sessions with an excellent cranio sacral doctor who really eased his pain and helped him sleep which is something he hasn't done in years. From what i remember you would do sessions + a lymphatic draining massage for any issues with the lymphs. ( i will ask my father when he wakes up i don't want to give you the wrong information )
Thank you for asking about my momma bear, she has decided to go forward with chemo and she had her first appointment with the oncologist yesterday. Her onco was lovely, very caring and empathetic and happens to be one of the leading oncos in England which makes me feel less worried, however i feel she did sugar coat alot of the information because she saw my mother was anxious. She told her NOT to cut her hair ( bear in mind her hair is long down to her back so I'm confused as to why she shouldn't as hair loss is expected and the shorter it is the easier to manage - she said the cool cap helps alot ) she said all these "horror stories" of chemo effects are very minor and that theres a good 50 percent chance she won't lose her hair. She also said that she will control any nausea she may get with an injection to the stomach, and that she will be able to function perfectly well after chemo. ( she made it seem like it was a walk in the park it was a little odd id rather she give my mother realistic information, but i can't knock her for being positive ! )
So the cocktail she "specially mixed for mum" is: E C once every 3 weeks, 3 times for 9 weeks and Taxol once a week 12 times for 6 months. She recommends she starts before xmas rather than after.
As for my aunt, she has finished chemo and I think is nearly done with radio - she's on a hormonal drug now ( she wasn't triple negative) but she was stage 2 and had big tumour which they managed to remove. Her hair is growing back now and she feels she is getting stronger.
Non of us have been tested for the gene test ( i actually forgot to mention it to the onco so silly of me ) will get on that at the next appointment !
I hope everyone is having a lovely weekend.
Lots of Love
Sarah Xx
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Hello Mary,
I think we are right not to take any chances with our right arm. I do not think the LSN would be issuing an alert card for this if it were not necessary. We have to remember that GPs are generalists, not experts.
I think you are making the right decision about not having surgery. Surgery is not something you go into lightly and anaesthetic certainly does not do us any good.
I was interested in what your acupuncturist had to say about the stem cell therapy to heal your shoulder. I think it is probably true that after having a tumour we really do not know what is going on in our body. We have been told NED, not no evidence and certainly not cured. I have two friends here whose cancer came back after 13 years and spread. They are both coping with metastatic cancer, one of the breast (hormonal) and the other of something else. That one has had immunotherapy, which made her really unwell, and has not worked. What your acupuncturist has said seems to make sense.
This week there have been headlines in some newspapers about a cancer cure. It is all about taking the blood from people who have somehow made a miraculous recovery and trying to identify what in the blood could have brought this about. Once they have identified it they can produce it in quantities and inject it into you. I do not know what to think about that. They have not identified it yet, anyway. They may not find anything. We all know stories about instantaneous remission. Some of these seem to have come about through having fevers. Who knows where the truth is?
My own belief about neuropathy is that there is no treatment for it and there is no cure. The way the "experts" have explained neuropathy to me is that it is numbness, lack of any feeling in the feet, and, I suppose, in the hands. I do not know about pain, so it could be that pain could be relieved, but I cannot see how damaged nerves can be repaired. We have to remember that it is peripheral neuropathy and it is not the same neuropathy that diabetics can develop. I do hope you will manage to find some relief from the pain.
I think it is about time that patients were really fully informed about possible side effects when going through chemotherapy and the long term after effects. Patients have a right to this and they need to hear it from their oncologist and not through the internet. They need to know the facts before they have the treatment.
My lymphoedema does not bother me physically. There is absolutely no pain and with long sleeves I am not aware of it. In short sleeves I think most people would not notice it. I still think patients should be made aware of it before they have surgery or radiotherapy. I think I am more fed up and frustrated with having to go back through the system. I find the NHS too bureaucratic and not joined up. It is also too dictatorial and swimming in paperwork. I shall go for my appointment on Tuesday December 5th at 2 pm, but I am not expecting much from it. I am doing my own exercises and carrying on as normal with gardening. I have found in the information I have been reading about lymphoedema a few contradictions, so I just make up my own mind. The lymphoedema specialist, the private one, has been most helpful with tips, even though I am not a patient. I had one consultation and learnt a lot.
It does not matter how many nodes you have had removed. Once they are touched the lymphatic system is damaged. You have to find a way to keep the lymph moving from the damaged side to the good side and then out of the body. It seems to me the best way is to keep physically active. Do not carry heavy weights etc. but make sure you keep using the affected arm.
That is all in answer to your first post. I shall continue in another post to you.
Love.
Sylvia xxxx
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Hello Mary,
I do not think we shall ever work out why we got breast cancer. Yes, we are both slim, we eat healthily, we do not smoke etc. but, as I said, we do not know what went on with us before we were born, when we were babies etc. My breast cancer consultant surgeon told me I should not have had it, but I did. I did have some of the risk factors that they list, such as having a late menopause, not having had any children, having a maternal grandmother who died of metastatic breast cancer age 70. As a child through school were given what would have been basic chest x-rays that would not have done us any good. There is no point worrying about how and why we got it, the fact is we got it and we have gone through the treatment and now doing our best to keep well. I think we are doing all we can with eating plenty of fruit and vegetables, having a rainbow diet, keeping active and trying to avoid negative stress. In the west we live in a polluted environment beyond our control. I did see plenty of overweight people when I was going through treatment and people smoking before they had radiotherapy.
I think a healthy gut is very important and I would not be surprised that a lot of people in the western world have unhealthy guts. Abuse of antibiotics does not help this.
I do have a lot of reading to do but it is finding the time to do it. I do make sure that I eat properly every day, especially vegetables. I do not really believe all these superfoods that are popping up everywhere and I do not think there is any one food that is going to cure or prevent breast cancer or any other cancer. I make sure I stay clear of any convenience foods where you have to read labels.
I do think it makes sense to stay away from processed foods and junk food and I do wish the food manufacturers would stop messing around with our food. If we take nuts, for example, we should eat them raw and fresh. We do not want them cooked and coated in sugar and chocolate or in any other way adulterated.
That is about all for this post.
Love.
Sylvia xxxx
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Hello LoveAndLight88 (Sarah),
It was good to hear from you and to know that the situation is progressing with your mother. There is no need to apologise. I know how busy and manic it is when sorting out breast cancer treatment. I was glad to know that your mother has decided to go forward with the chemotherapy treatment. I was also glad that her oncologist dealt with everything in a caring and empathetic manner.
I was interested to read about the treatment, as it is almost the same as mine and is pretty standard. I also had EC every three weeks. The E stands for epirubicin (the brand name is Ellence) and the C stands for cyclophosphomide (the brand name is Cytoxan). I had this every three weeks for three months and started in November 2005. I also had a taxane drug. There are two, docetaxel (brand name Taxotere) and paclitaxel (brand name Taxol). I had this drug every three weeks for three months. My treatment went from about November 17th 2005 and ended at the end of April 2006. I did not have any real problems during the six months of treatment. I had some fatigue and I just used to rest, otherwise I carried on as normal. As for the taxane drug, your mother is having it once a week and the women on the thread say that it is easier like this. I had it every three weeks and was fine, except I had a metallic taste in my mouth, but it did not bother me.
During chemotherapy your mother needs to keep well hydrated, get plenty of rest and keep looking forward.
After each session of chemotherapy, I was given anti-nausea meds to take for the first three days. I had no problems with this medication.
I tried to eat healthily with simple meals that were small rather than large. I kept to fruit and vegetables with some fish and some mashed potato. I also eat prunes and dried figs for iron and fibre so that I never had constipation.
It looks as though your mother will be having her treatment through the same months of the year that I had.
These chemotherapy drugs are made up based on your weight and height. They are usually made up in the oncology department at the pharmacy when you arrive for your appointment. I used to be in a ward made over for chemotherapy treatment to outpatients. I used to sit in an armchair and an oncology nurse would fix me up to a drip through which the drugs were fed into the body through a cannula on the back of my hand. There are other ways of feeding the drug through and the oncologist will probably discuss this with you.
I was told straight away that the drugs would cause hair loss and to expect to start losing hair after the first infusion. Since your mother has been told not to cut her long hair, does it mean that she is going to have a cold cap to help prevent hair loss?
I can understand that the oncologist has gone gently with your mother, because she would have picked up on the anxiety. Patients have different experiences during chemotherapy, so you cannot really go by what other people say.
It is true that now they do have an injection for after each chemotherapy session to prevent nausea. I was not offered it back in 2005/6 but I never had a hint of nausea and was never sick.
It is not a walk in the park and you just have to be gentle and take care of yourself. I was told to get a flu jab and a pneumonia injection before I started treatment, because your immune system will be weakened and you can easily pick up infections. I avoided crowds and public transport and kept clear of anyone with colds etc. I was also told to get any dental work done because you cannot have it done during chemotherapy treatment.
Before each infusion you have a blood test to make sure that all is in order and you are fine for going to the next infusion. I had a district nurse from my GP surgery come to my home the day before my chemotherapy appointment to take blood which was then sent to the hospital. They would have the results in oncology when I arrived.
I do hope all this helps. It is a bit manic at first but once your mother settles into the routine of treatment, she will be fine.
If there is anything else you need to know please come to the group and we shall all be only too happy to support you and your mother through all this.
You might like to put the details of the treatment at the bottom of your profile. It is a good reference for all of us so that we can remember the treatment.
I am doing fine. I am not in any pain at all with my lymphoedema and I am carrying on as normal. I do know about lymphatic manual drainage and I do special exercises to keep the lymph moving.
I was sorry to read that your father suffers from chronic pain and chronic insomnia. Is there any particular reason for this?
Let us know when your mother starts her treatment. I do hope the hospital she goes to is not too far. If I remember you are in London, so you have access to excellent hospitals. The Marsden Hospital is said to be one of the best.
Are you a teacher by any chance? I am a former High School teacher and have taught French as a second language, as well as English as a second language.
That is about all for today. You are doing and excellent job helping your mother.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
This is just a quick post. I was looking at Active Topics and I saw the lymphoedema forum again and a thread in it entitled Lymphedema Cancers gift that keeps on giving.
I found some interesting posts and one in particular from Binney4. I am pasting my post to her in response to the post full of information and links that I found from her. One in particular is addressed to health care providers. It is entitled Essential lymphedema information for all health care providers: from a physician with secondary lymphedema. I think you will find it most interesting.
Nov 24, 2017 04:18AM Binney4 wrote:
PVM, I hear you on your worries about lymphedema. Being aware of the need to be vigilant will absolutely help you catch this early if it develops, and that can make a huge difference in managing it if it ever develops. Here's the website for the Lymphedema Association of Ontario:
They're on a mission to help with both awareness and management of LE in Ontario, so they will be a good place to find support and current local information.
I agree with JKL that you need to insist on seeing a LE specialist. It might help to tell your referring doctors that you MUST HAVE baseline arm measurements for future reference, done by a lymphedema specialist, BEFORE you begin rads. Here's information written especially for medical professionals, by a doctor who developed LE herself:
http://www.stepup-speakout.org/essential%20informa....
There's a printer-friendly version also, so you can make copies for your healthcare team.
Unfortunately, a lot of lymphedema care depends on those of us at risk standing up for ourselves (which is why that website was named "Step Up, Speak Out"!)
You can do this! Please tell us how we can help.
Gentle hugs,
Binney
Hello Binney,
I have recently developed lymphoedema in the right arm 12 ½ years after cancer treatment. I had it slightly in 2006 when I finished treatment but I did exercises and it went away after two appointments at the lymphoedema clinic. I now have an appointment in December. I have done a lot of research on this and think it does not get enough attention in cancer treatment.
I had one node affected and seven removed in all.
I have read that all surgery carries a risk of lymphoedema, even without removal of lymph nodes and that it is not restricted to cancer treatment.
Is this true?
I see that you have been on the forum a long time.
Best wishes.
Sylvia xxxx
Sylvia, brava to you for staying on top of this, and jumping on it right away when it reared its ugly head!
There are several causes of lymphedema (add on extra "o" to that word for the UK!) besides the removal of lymph nodes for cancer diagnosis. Obesity alone can result in lymphedema, and is fast becoming the leading cause of lymphedema in the developed world, passing up cancer treatment as the current leading cause. But as Hugz says, any trauma that damages the lymphatics can result in this condition. Football players are sometimes affected, as well as women who have surgery for breast reduction or augmentation, people who have been involved� in auto accidents, and any crush injuries (after the earthquake in Haiti there was an "epidemic" of lymphedema from all the people who were trapped or injured by falling debris). In tropical countries the leading cause of lymphedema (also called elephantitis) is a parasite carried by mosquitos that lodges in parts of the lymph system, creating blockages.
All of those are "secondary lymphedema," caused by interference with an otherwise functioning lymph system. But there is another kind of lymphedema called "primary lymphedema" that results from a genetic malformation of the lymph system. Babies can be born with lymphedema, or primary lymphedema can develop at puberty or later.
As hard as it is for us to find excellent care for our lymphedema, or even a quick diagnosis, our post-breast cancer LE is the most readily recognized in the medical community. Women with swelling in their legs and/or abdomen from gynecologic cancers (or men following prostate cancer treatment) have a much harder time getting care, and people with primary LE may wait years or decades for a proper diagnosis.
In other words, we still have A LOT of work to do to help bring awareness to our medical teams and the wider society about this rotten condition.
Onward!
Binney
Hello Binney,
Thank you for your prompt response. It is most appreciated. I seem to have done nothing except research for two months, ever since I noticed my right arm was swollen on about October 13th. I have been waiting a long time for an appointment on December 5th. Strangely, it came on after I had had a flu injection in the good arm. I had not had a flu injection since 2005 when I was diagnosed with breast cancer, TNBC. I have asked whether that injection could have started something with my lymph and I have been told that it is possible. I have read up all the information on bc.org and all the information on MacMillian Cancer UK and have joined the Lymphoedema Support Network in the UK. I have just ordered Let's Talk Lymphoedema, the essential guide to everything. The author is connected to LSN.
I have done a lot of posting on the thread I started in 2010 Calling all triple negative breast cancer patients in the UK. It now has people from all over the world.
I have put this thread as my favourite as I feel very strongly that it is a much neglected part of cancer treatment and a very nasty side effect.
I have just read all the information that is meant for doctors and found it most interesting. Thank you for the link.
Sending you very best wishes and many thanks.
Fond thoughts.
Sylvia xxxx
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Hi, Lou
It's good to see you back here, and I see that you are recovering from fever and flu. It takes a while to get over all that, and the little ones do bring it home with them at times. I tend to think of flu only happening where it's cold, but I know that's not the case. Our worst time is October-February, the last time I had Influenza A was in February 2013. Bad stuff!
I like coconut water too, seeing your post reminded me that I needed to pick some up, so I did when I went to the store earlier today. I don't know what bitter gourd is, or bitter melon for that matter. I think I saw somewhere that bitter things are good for us, maybe because sweet things usually are not good for us. Except for the sweet fruits. I also like whole foods, not processed and I drink very little juice, I think I need the bulk and fiber of the whole food. I did find an organic carrot juice that I like, but even that has 7 grams of sugar per serving. Most juices one buys in the store are as sweet as candy, the sugar is too concentrated. Mostly I just drink water.
I see you are going back to work part-time, I think that is great. Getting out and interacting with people is so beneficial, and from what I know of you, you are kind and caring and will fit right in at a job where you can help people who are traveling. It's also nice that it's a luxury hotel!
I do hope you will come back and update us when you have time away from your busy life.
Take care of yourself, I will talk to you again soon,
Love, Mary
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Hi Sylvia, Mary and all
I got my pathology report but it isn't complete yet. It doesn't have the HCI report dealing with hormonal matters. It s grown really fast while my doctor had dismissed it as fat necrosis! What a shame! It was now 4.5 cm in largest diameters but no lymph nod involvement. I can't sleep a wink. It's 4 am and I'm having a busy day today. I hope I manage it.
Mary my doctor said the prognosis is good and I hope it's true.
Sara, thank you so much for your nice words.
In next few days I should plan my chemo.I think I should take a term off as we can not cancel our classes easily. I don't know how much I will miss my classes and students. Yet, I may do class observation.
Hope everything goes well.
Love
Hanieh0 -
hello they this me to my
Abrazos
Marias
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Hello Marias,
Thank you for sending that report.
I am beginning to think that pathology reports given to patients become a source of worry.
Patients are not doctors and may find these reports difficult to understand and may misinterpret medical terms.
This is my own, personal, belief.
I did answer your previous post and put it into Spanish to make sure you understand everything.
As I understand it, and, remember, I am not a doctor, you have had a thyroidectomy for papillary cancer of the thyroid and you have three lymph nodes positive out of ten removed.
You need to talk to your surgeon.
I understand metastatic to mean cancer that has spread from the original site to another site in the body.
Breast cancer with some positive lymph nodes under the arm is not metastatic breast cancer.
Do you know what treatment you are going to have now?
With your thyroid removed, I would have thought you need to be on synthetic thyroid hormone medication.
What has happened to the four tiny parathyroid glands that sit on the thyroid?
I hope you are slowly recovering from all this.
It is important to talk to your consultants and make sure you understand what they are saying.
Abrazos
Sylvia xxxx
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Hello Hanieh,
Thank you for your post.
Your doctor has said the prognosis is good and you must keep that in your mind and go forward.
You have got through your surgery and you must now prepare yourself for chemotherapy. Let us know what chemotherapy drugs your doctor is going to suggest for this.
If you feel that you need to take a term off, try to do that. You know, and I know, that teaching is very demanding so you may want to have time off. You know that fatigue is a big part of chemotherapy. Do what you feel is best for you and best to keep you away from stress.
It would be useful if you could update your profile page to add your surgery and then chemotherapy regime. It is a reference for all of us, so we do not get muddled with patients' various treatments.
Sending you fond thoughts.
Sylvia xxxx
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Hi, Sylvia
I have gotten another post from Chris Woollams, and found it so interesting that I have been reading since I got up very early this morning. His last post was mostly articles about the evils of sugar, but this one reminded me of something I had almost forgotten, and I can't believe I put it out of my mind. The first couple of articles deal with the dangers of HRT (hormone replacement therapy), birth control pills and whatever else that causes overloads of artificial hormones in the body.
I was told I needed a hysterectomy when I was almost 40. I had constant bleeding, and underwent laparoscopy, a D & C, and since neither worked, the hysterectomy. The doctor then prescribed estrogen pills, I took them for some years and the doc retired. My next gyno approved of the pills heartily, she retired and my next gyno, a very young doc, also thought they were a wonderful idea and the cancer risk would be negligible. Every year when I saw her I voiced my doubts about taking them, she always said that they were so helpful to bone health, skin health, etc. that cancer fears were overblown. I finally stopped taking them on my own, she then prescribed me a vaginal suppository that I used only twice a week. I do believe that this is probably not nearly as problematic, but I stopped that too.
There are also articles on stress causing cancer, with explanations for why it is possible. Also articles on womb cancer, which I haven't read yet. Part of his post also deals with aspirin as preventive for further tumors, although apparently not as much for TNBC.
"Eating your way to stronger bones", is another article in Woollams' post. I have really been absorbed in this post this morning, and I did take the estrogen replacement for many years, it might indeed have been part of the reason for my BC. I will always believe stress was a factor, and this is explained in the articles on stress. I do know the important thing is how we take care of ourselves now, but my mind is always going to wonder why I developed it in the first place.
The article on hormones could also explain some of why so many younger women are developing BC. Perhaps because of the prevalence of hormonal birth control?
Thanks for the link from Binney and the Lymphedema thread. I think it's very much like the neuropathy I have, we just have to deal with it and there are no cures, only maintenance. I do know a man who developed lymphedema in his leg after prostate surgery, he was very miserable until the doc got him to someone who did lymphatic massage and wrapped his leg properly.
I am going to link to one of the articles on the dangers of HRT, it is very long but if anyone has ever taken a hormone-type pill, also very interesting.
ttps://www.canceractive.com/cancer-active-page-link.aspx?n=383
I have to go for now, but I will talk to you again soon.
Love, Mary
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Hello Mary,
Thank you for your post. I also have the new email from Chris Woollams, but I have not had time to look at it yet. From what you have said in your post it all sounds very interesting. As you said, the email before that was mainly about sugar and we are all told that we should stay away from this.
I was interested to know that the first couple of articles deal with hormone replacement therapy, HRT, and birth control pills. I do remember that there were discussions on the thread about this in the early days when I first started it.
I have always thought that there is probably a connection between taking birth control pills and the possible development of breast cancer. With these and HRT it seems to make sense that there is an overload of artificial hormones.
One of my neighbours here in the complex was diagnosed with hormonal breast cancer in 2001 and she told me that she thought it was caused by being on HRT. Apparently she was left on it for about ten years. She went through cancer treatment and is still fine sixteen years on, but she has had her share of health problems. She is another one, like me, who also had the risk factor of not having had children. My friend who died from triple positive breast cancer had also not had children.
For me menopause was a non-event but I know that for some women it is very difficult. I have never taken HRT and would have refused it. There has been so much negative publicity about it.
I was taking the pill for a couple of years, but I soon got off it. I had it in my late twenties after having an ectopic pregnancy (not much fun).
I have been reading what you said about a hysterectomy etc. We just do not know what these pills do to our body and what they can cause years on. I believe that all these surgeries do not do any good but doctors seem gung-ho to perform hysterectomies etc. I was glad to know you stopped taking those oestrogen pills.
I shall write more about these things when I have read the email.
Stress has also been much discussed on this thread since inception. It would make interesting reading to go back to the beginning on this thread and read it all through, but I just do not have the time. I think newbies to the thread might be able to do it gradually. There is such a lot of information on here.
I do not need any convincing about stress and breast cancer or any other cancer. I think stress eats away at us and undermines the proper functioning of out immune system.
I know I shall read with interest the article about "Eating your way to stronger bones". I do believe that nutrition is the way to get calcium into the bones, and not supplements. I try to do this because of the osteoporosis caused by chemotherapy and radiotherapy. All these things that have been induced by cancer treatment really do add up. I am sure my osteoporosis was caused by the treatment. In addition, as you probably know, I was also diagnosed with an over active parathyroid gland at the same time. There is research about an over active parathyroid gland and the development of breast cancer and they do not seem to know which one causes which. I was told the parathyroid problem was there before the breast cancer tumour, but who knows? When your parathyroid is over active, calcium leaches out of the bones into the blood and builds up in the blood, causing osteoporosis. Research also said that the cause of both could be something else, such as x-rays in childhood. As I have said before, we probably shall never know what caused our breast cancer but we can add up all the risk factors and we are surprised at how many there are.
I do believe that all this messing around with synthetic hormones may be a contributory factor as to why women are getting cancer at a younger and younger age.
I do find the lymphoedema forum very interesting and I was surprised at how numerous the threads are within it. Do try to read the one by the doctor who has it following breast cancer and is writing it for the attention of doctors who are treating it to make them aware of how to do it. I was surprised to read that at medical school students have about just fifteen minutes of learning about the lymphatic system. That is about as bad as what they are taught about nutrition.
Thank you for the link about HRT.
I shall get back to you when I have read the newsletter.
I was impressed with Binney and the fact that she started on the bc forum in 2004 and has done over 8,000 posts. I started in 2009 and have done over 5,000 posts. Ironically I discovered bc.org after my breast cancer treatment when I was looking for information about hyperparathyroidism as I was preparing to have suregery. I linked up with sam52 on the High Calcium forum and we went through our surgery together. Sam had been diagnosed with hormonal breast cancer in 2001. We corresponded for a long time but she does not seem to be on the thread now. I hope she is out there living a normal life. She is a Londoner like me and also a teacher (probably retired now).
That is about all for now.
Love.
Sylvia xxxx
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Hello Mary,
I have just spent the afternoon reading that latest email and clicking on the relevant headings. I think it is very important to keep up to date on everything. I was very interested in item 1 – How women are still at risk from synthetic hormones. I read the article by Dr Sherrill Selman about this synthetic hormone. I knew about the dangers of HRT and so I was not surprised to read that this can double the risk of breast cancer. It was interesting to read that Cancer Research UK now admits this.
I also read with great interest item 2 – Womb cancer linked to cadmium in body and sugar-rich drinks and being overweight increase endometrial cancer risk.
Needless to say that item 3 – Stress and its links to cancer was probably of the greatest interest to me, as I do link my own breast cancer to too much stress. Those articles within this item – Stress receptor spreads breast cancer and the information that stress affects your body's biochemistry and causes cancer and more metastases. The other part of this item also interested me greatly – Stress acts as a fertiliser for cancer.
What did you think of this? I did not know about the sympathetic nervous system and that there is a dense supply of these nerves in the female breast.
I think I need to manage stress in a better way. I need to learn to relax more and not to worry so much! This is easier said than done. I can actually feel the stress when my body is under it.
I read out section 4 – So you think high testosterone could cause prostate cancer? - Prostate cancer, testosterone and oestrogen. It seems as though it is not being treated correctly.
The next item was also of interest 5 – Want to increase your bone strength naturally? This is important to all of us because of chemotherapy induced osteopenia or osteoporosis. I do my own treatment and have stayed well away from bisphosphonates. It looks as though we are doing the right thing by following a rainbow diet. Again, the importance of olive oil is stressed, as it maintains blood calcium and insulin levels and increases serum osteocalin concentrations, providing a protective shield against future bone loss. In addition to the chemotherapy induced osteoporosis, I have the additional problem of having had an over active parathyroid gland which was found by accident when I was diagnosed with breast cancer. This problem causes calcium to leach out of the bones and into the blood.
As for 6 – How to increase your odds of personal of survival, I just continue doing what I think is right for me.
It would be interesting to know whether anyone has had one of those personal prescriptions.
Finally section 7 – What diet should you follow to reduce cancer mortality. Of course. It is no surprise that being on the healthy Mediterranean diet is suggested as the way to help beat cancer. We know we have to eat healthily and we know what that means about what we should eat and what we should avoid.
That is about all for now. While I was reading through all of this I clicked on a few more items and I was particularly interested in the article entitled Triple Negative Breast Cancer – overview and treatments. This is quite long so I shall have to leave it until another day. This article should be of interest to all of us TNBCs.
I hope you are having a good week. I am still trying to find a way to have more time to myself, to carry out my work as a director here, to keep the thread active, meaningful, informative, comforting and helpful and to have some relaxation.
Hope to hear from you soon and hope we shall hear from Marias and Hanieh.
I must go now.
Love.
Sylvia xxxx
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Hi Sylvia and all
I'm in the middle of rushing game to start my treatment. My oncologist wants me to have the strongest chemo possible. At the same time encouraging me to try cold caps again. He says this time he will send me to a more successful centre. I'm in real doubt. I really don't know whether I can go through all the pain again. Last time I was not successful.
He has also ordered some scans and blood test which I hope they all come back clear. He suggested me to take some months off from work as my chemo will be harsh.
To be honest, I have not lost hope. Although all these are going to be really hard with me and my family I think there may be light at the end of the tunnel. I pray every day things go well.
I need your prayers and positive energy.
Love
Hanieh
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Hello again,
I will update my profile as soon as I get my staging and chemo regiment. I may need radiation again too.
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Hanieh - Inshallah all will go well. My mother's onco is also encouraging her use the cold cap, I know its not the most comfortable option, but after reading the reviews on it from some of the lovely women who have used it on this forum, I am optimistic it will save some hair.
Sarah Xx
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Hello LoveAndLight88
How nice lady you are. I deeply pray that your mother gets the best results and has a longlife recovery.
It's really a hard decision for me as the centre I should go to to use cold cap is sooooo crowded with long waits almost until 2 in the morning!
The doctor may not have enough time for counselling. Yet the hair issue is also a serious matter. I really don't know what to do.
Now I'm going to have scans of my body in a few hours.
Love
Hanieh
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Hi Mary and Sylvia !
Its interesting to read the factors that apparently contribute to BC.
I was having this conversation with my mother and aunt, and she was telling me how she thinks her Thyroxine meds probably played a part. She's been on it for years. Both my mother and aunt never breast fed either, so that was another topic of conversation they thought had a connection to their BC. Stress and diet also.
Sylvia - I am not a teacher, I am a jewellery designer ! I love that you taught french, one of my favourite subjects i ended up taking it for my A levels and took it as a minor during my university studies ! malheureusment j'ai oublie beaucoup de la grammaire et des verbes !!! have to brush up on it !
Lots of love
Sarah xX
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Hanieh - Thank you for your kind words and prayers, i wish and pray the same for you and to everyone going through this!
As a woman i understand how important hair is, just know whatever decision you decide to take. Hair grows back! and inshallah it will grow back faster, thicker and longer ! - Ive been telling this to my mum and its really changed her outlook ! I hope all your scans go well today !
Praying for you !
Sarah xX
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Hello Hanieh,
Thank you for your post. Please let us know what drugs you are going to have for your chemotherapy regime. Do not be too rushed. At least give yourself time to think. Last time for your chemotherapy you had AC. This is doxorubicin (Adriamycin) and cyclophosphomide (Cytoxan). I was surprised last time that you did not have a taxane drug to complete the regime. The taxane drugs are docetaxel (Taxotere), and paclitaxel (Taxol). Remember that the doses of chemotherapy drugs that a patient has are measured on their weight and height.
I do not know what to say about cold caps because I have no experience of them and I was not offered them during my treatment. My oncologist said she was against them because of fear of infection. My information is that going through the cold cap option is quite long-winded and you spend a lot of time at the oncology department. Whether to have the cold cap or not will have to be your decision.
I do hope all your scans and blood tests will come back clear and it will be alright for you to start chemotherapy. You do not want to start it if you are not completely recovered from your surgery.
You need to start your chemotherapy with determination and a strong mental attitude. It sounds to me as though your oncologist is frightening you, instead of reassuring you. You must tell yourself you are going to get through this just like you did the first time.
It might be useful to have some time off from work so that you can take care of yourself and rest as much as you can. Remember that during chemotherapy you must keep yourself well hydrated, eat a healthy diet and rest as much as you feel you need. Do whatever you can to keep your mind strong and determined.
Sending you fond thoughts.
Love.
Sylvia xxxx
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Hello Sarah,
Thank you for your post.
It seems there is quite a long list of risk factors for developing breast cancer, but, as my breast cancer consultant surgeon told me, a risk factor is just that and it does not mean it caused your cancer. The risk factors, so we are told, are as follows,
1. Having an early menarche (starting your periods early).
2. Having a late menopause.
3. Not having had any children.
4. Having your first child late in life.
5. Not breast feeding.
6. A close family history of breast cancer.
7. Having the faulty genes BRCA1, BRCA2.
8. The birth control pill.
9. Being on HRT.
10. Being overweight.
I am sure we can find others, such as a sedentary lifestyle, smoking, alcohol, and, above all, not eating healthily.
I think stress is a big factor.
I was interested in the conversation you have been having with your mother and aunt. Is it your mother or your aunt who is on Thyroxine for thyroid problems? I was interested in this because I was diagnosed with breast cancer and an overactive parathyroid at the same time and was told the parathyroid problem (hyperparathyroidism) came before the breast cancer and was never diagnosed. There is research suggesting a connection between the two and I think this applies to thyroid problems as well. You might want to have a look at two threads where there is a lot of discussion about it.
Parathyroid disease and breast cancer is the thread and the forum is IDC (Invasive Ductal Carcinoma).
The other one is High Blood Calcium Levels in the forum Not Diagnosed With a Recurrence or Metastases but Concerned.
Do you think you will ask for genetic testing to see whether your mother, and your aunt carry the BRCA1 or BRCA2 gene. It would be useful because the other sister had it and died as well.
I was interested to know that you did A level French and then took it a minor subject during your university studies. What was your main subject?
Sending best wishes to you, your mum and your aunt.
Love.
Sylvia xxxx
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Hello Kathy in the UK,
I do hope all continues well with you and your sister. I hope she is still doing well.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
I do hope we shall hear from you soon so that you can let us know what is happening.
I was wondering whether it is possible that your breast cancer and thyroid problem are connected. I recently looked back at a thread where I posted quite a bit in 2009. I had been diagnosed with breast cancer at the same time as an over active parathyroid gland (hyperparathyroidism) and was having surgery for this in 2009. There is a lot of information on this thread and another thread.
Parathyroid disease and breast cancer is the thread and the forum is IDC (Invasive Ductal Carcinoma).
The other one is High Blood Calcium Levels in the forum Not Diagnosed With a Recurrence or Metastases but Concerned.
Please let us know what is going on with you.
Love.
Sylvia xxxx
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Hi, Hanieh
I am sorry to read that you will have to go to another center and have more chemo, but if that's what it takes you have your youth and strength to carry you through. Also you have a loving family to support you. I'm glad you are going to another place where you may have better care.
Cold caps were not offered in my area of the country, also I wasn't too worried about losing my hair temporarily. I had my head shaved when I started losing my hair, and I had a couple of nice wigs that I wore when I went out. I was not anticipating losing my eyebrows and eyelashes, that bothered me for some reason. My hair grew back, the eyelashes and brows didn't grow back as thick as they were before.
Also I wanted to tell you I was driving in my car on Wednesday for several hours as I do often, I was searching the radio stations and I landed on Joel Osteen's station. I listened for about an hour and thought about you a lot. I found his message to be encouraging and positive with emphasis on the fact that we are not alone. We have our Creator, or whatever higher power you believe in, with us always. It is very hard when facing all these troubles to stay in a positive, peaceful mode, and I battle with that too. I notice Sylvia mentioned in a post above that she thinks she worries too much. I also do that, and I really have to work on pulling my mind back to hopefulness and positivity. I am sending you whatever positive, warm thoughts and prayers I can think of as you start this journey and will be waiting for more news.
Talk to you soon, love,
Mary
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Hi Sylvia,
It was my mother who was on thyroxine for around 16 years - she had an under active thyroid. I'm going to read up on this ! thank you for sharing the threads !
As for the BRCA tests - my mum will be taking the test in two weeks, I'm not sure if they offer the test where my aunt is ( she's in the middle east ) so she would probably have to do it when she's visiting us in London.
How are you doing with the lymphedema issue you had? I hope you are doing better !
xx
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