Calling all triple negative breast cancer patients in the UK
Comments
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Hello everyone
I was wondering how many of you know the term "metabolic syndrome" and what it means. My latest research shows that women with metabolic syndrome are more likely to have TNBC on diagnosis than women without it.Apparently a high fibre and high calcium diet lowers the risk of TNBC. Of course, I do not think that any of us knows the truth about the theories we find. I have read many times that dairy products increase your risk of hormonal breast cancer, but do not know whether this applies to non-hormonal. According to the article I read on the internet, this would not seem to apply to TNBC.
If you want more details about TNBC and diet for TNBC patients and survivors, you might be interested in reading the article in more detail.
This article lists all foods etc. that are supposed to lower the risk of TNBC and the foods that have the potential to increase risk. Foods that have the potential to increase risk are alcohol, coffee (unless BRCA1 or BRCA2 carrier) and corn oil.
There are also details about foods that help to regulate glucose and reduce circulating insulin levels at the same time as protecting against BC. These foods supposedly may help to reduce the likelihood or extent of metabolic syndrome.
All this information is dated March 5th 2011, so it is up to date. If you are interested you can find an article on metabolic syndrome if you Google the Patient Plus article.
There is also an interesting article about recommended foods for breast cancer at:
http://foodforbreastcancer.com/recommended-foods.php
You might be interested to know that a 2009 study found that in 8% of the cases where the original BC was ER- the subsequent metastatic was ER+.
I would be interested to hear from anyone who knows about metabolic syndrome and whether doctors still test for it. In the article it advises women with metabolic syndrome to discuss this with their oncologist.
I hope everybody going through treatment is doing well. It would be nice if those viewing this thread would let us know when they finish their treatment. It would also be useful to hear from long-term survivors whether they still have side effects and long term problems, such as osteoporosis, neuropathy problems with the feet and hands and anything else that it may be useful to hear about.
That is all for today.
Sylvia0 -
Hello Everybody
I am just writing to comment on the fact that there have been no postings since my last one on April 3rd and therefore very few viewings. If there are no postings it is very hard to keep up viewings. Since this thread began the basic procedures after diagnosis have been discussed and up to date information about new research and potential new treatments have been given. Where do we go from here? We need postings to let all of us know how people are coping as they go through treatment and their own personal experiences with triple negative breast cancer. This thread is supposed to be about help and support for one another.
I hope that the lack of postings means that all of you with TNBC are coping well and doing well. I also hope that the lack of postings means that there are not many new diagnoses of TNBC. If there are some among you who are not feeling good or who are not doing well, please let us know.
Anyone with triple positive breast cancer is also welcome to post and anyone with any kind of breast cancer, if you are looking for support and encouragement as you go through treatment.
I hope you all have an enjoyable Bank Holiday weekend. That is all for today.
Sylvia
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Sylvia,
I am on these boards for my sister who has TNBC. We are in the US, but I wanted to tell you that I follow along on this thread (hope you don't mind) and find a lot of positive, encouraging info. Thanks for continuing to post studies and information that you find.
Tonya
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Hello Tonya
I was so glad to see your posting and, of course, you are very welcome to post here. Remember, these threads are for people with breast cancer and their carers and family. I can understand what you are going through and how difficult all of this must be for you.
I think it would be a good idea for your own peace of mind to go through genetic testing and then keep a good check on yourself. As regards your sister, who had BC in 2004, and has now developed non-hodgkins lymphoma, I hope she is doing well. Do you think there is a connection? Did that sister have TNBC? Is it that sister who has tested negative for BRCA? Was she tested for BRCA1 and 2?
I do hope that your sister, who is going through treatment at the moment, will have a good response to the chemo. It does seem that Taxotere (generic name docetaxel) is a very successful drug in the treatment of TNBC. I was interested to know that your sister is having the Taxotere first. Oncologists must have decided this is the best way to go. When I had my own treatment it was three months of combined epirubicin/cyclophosphomide and then three months of Taxotere. The Taxotere caused me to lose my eyebrows and eyelashes, but they do grow back. My hair started to fall out after the first treatment of e/c, but it does grow back. Just tell your sister to hang in there. We can all get through chemotherapy. I found it very helpful to drink plenty of water and get plenty of rest during chemotherapy.Does your sister know what stage she is at? It seems to be that often, with TNBC, people are at stage 3. It also often appears that the tumour grows very quickly and comes from nowhere. That was certainly my experience.
Nowadays, there seems to be a lot of emphasis on preserving the breast, but that is something your sister should discuss with her medical team. I was told that I needed a mastectomy, because the tumour was very large. It would have been my preference anyway to make sure that all cancerous tissue was eliminated. Your sister should also find out about her node status.
It does appear that this cancer affects mainly younger women, and I would dearly love to know why. I was nearly sixty-three when diagnosed in 2004, and I feel that back then it was the dark ages with TNBC. I was told that, because of the age at which I was diagnosed, it was unlikely to be genetic.
I hope all goes well with your visit to a specialist in May.I hope your sister is doing well and that she is coping with the side effects of chemo. I found prunes, figs and plenty of water kept constipation at bay. Sore and red feet and hands were also part of the side effects. I still have the soles of my feet that do not feel normal. I recently had a podiatrist test them for neuropathy and she confirmed what I already suspected, which was that I had neuropathy as a consequence of my breast cancer treatment, namely the chemotherapy. I am afraid it is something we have to live with. The podiatrist told me it does not go away!
That is all for now. I hope that you and your two sisters will get through all this. Please do not be shy about posting and tell your sisters the same. We are all in this together.
Sylvia
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Hi Sylvia,
Thank you for your kindness. I will be going to meet with a geneticist end of next month when my sister Natalie is done with her treatment. I am anxious to find out what kind of monitoring they will do for me. I'm a little afraid to get the BRCA test, but not knowing is scary too.
My sister Karin is the one who had BC in 2004 and now has NHL. She was never tested for BRCA 1 & 2. She had DCIS and had a mastectomy and was pretty much just sent on her way. At the time the doctors were treating her BC as if it were just a fluke even though our father's sister passed away from BC in the 1970's. I only know that she was in her early-mid 30's. When Karin was first diagnosed with the NHL her doctor mentioned her having had BC and he started to say something to the effect of the two cancers being related, but he stopped himself. I have thought of asking her to get the genetic test, but she and I aren't very close (she's almost 10 years older than me).
Natalie had taxotere first because she wasn't sure if she was going to do Adriamycin/Cytoxin due to the cardiac toxicity so her onc had her start with Tax first while she gave it some thought. Her tumor is barely palpable now. I have been praying for her to have a complete response to Chemo. Tomorrow I am taking her for AC #2. Two more to go after this. She's anxious to be done. But I think she is being a real trooper!
When Natalie first met with the Breast Specialist she was told she was probably about a stage 1 or 2, but probably more like a stage 2. Since she's had chemo first I'm not sure if there's a way to actually know. I'll pass along the tips you've been so nice enough to provide. She's been having the hand and foot problems that you mentioned and today she lost a fingernail.
I'll keep you posted.Tonya
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Hello Tonya
Thank you for your posting. It is so much more encouraging to carry on when someone posts.Once again I do hope all will go well with the geneticist when you meet at the end of next month. I can understand that you want to wait until your sister Natalie has finished her treatment. There is such a sense of relief at the end of chemotherapy treatment, as it is the longest part of breast cancer treatment. We are all different, but, as for me, when I was diagnosed, although frightened, I wanted every bit of available information that I could lay my hands on. Information is invaluable. I would think that the kind of monitoring you would get would be mainly mammograms, but also, perhaps, blood tests for checking cancer markers. I can understand your being afraid about getting the BRCA test and it will be a hard decision. I can only speak for myself and say that I would want it. I would have liked to be tested, but under our state health system, I did not qualify, because of age and insufficient family history, even though my maternal grandmother died of metastatic breast cancer at seventy. Of course, back in the 1950's, cancer was in the dark ages. My grandmother had a mastectomy and some radiotherapy. I do not think she survived very long after diagnosis and treatment. Really, with your BRCA test decision, it is a no win situation. Concern if you do not have the test, concern if you have it and it is positive. However, none of it means that you will definitely develop breast cancer.
In your sister Karin's case did they tell her what kind of breast cancer she had, hormonal or not? I was surprised that she had a mastectomy because I thought that DCIS was a sign of calcium deposits that might or might not develop into a malignant tumour. When the tumour is there it is known as IDC (invasive ductal carcinoma). I think this is the most common of the breast cancers, whether they are hormonal or non-hormonal.
I was interested to read what you said about breast cancer and non-hodgkins lymphoma and her doctors comments. You might be interested to look at the following:
http://www.ncbi.nlm.nih.gov/pubmed/11079174
I have to read this more carefully, but it is all about women with breast cancer developing NHL afterwards, or simultaneously with the breast cancer. I think the gist of the article is that something may have caused both. This interested me, because I was diagnosed with breast cancer and an over-active parathyroid gland at the same time. The consultant said she thought the over-active parathyroid gland had preceded the breast cancer. I found research indicating a possible connection, but no certainty about which one caused the other, and the theory that something caused both, possibly mass X-rays in childhood.
It might be a good idea for you and your sister Karin to get together for genetic testing.
It looks as though your sister Natalie is responding very well to her chemotherapy, especially if her tumour is barely palpable. The experts do say that TNBCs do respond very well to chemotherapy. I do not know whether you can have a complete response. I do remember my oncologist saying that chemotherapy alone could not cure me, and that I would require surgery and radiotherapy. One of the chemotherapy nurses told me that with breast cancer the experts always advised surgery, be it a lumpectomy or a mastectomy. Does your sister know whether nodes have been affected?
Please tell Natalie not to be too concerned about loss of fingernails or toenails. I do know that when I was on Taxotere my toenails turned brown, but only one fell off. A younger friend of mine lost a lot more toenails, but they do grow back. My fingernails were not affected, but the backs of my hands used to turn bright red, and they still do.
I hope you, your sisters and family members have a nice Easter weekend. Here in the south of England the weather is unusually mild for this time of year, and the Exmouth seafront is packed with people.
Sylvia
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Hello again Tonya
I forgot to say yesterday that in the article I was reading about breast cancer and non-hodgkin's lymphoma, it appeared to say that, when the NHL occured after breast cancer, that it was not induced by the therapy used to treat the breast cancer.
It got me wondering how you could know this for sure. I wonder often how much my body has been affected by the chemotherapy, radiotherapy, surgery and drugs used with all this and what the long term effects could be. It is the price we pay for staying alive.
For everyone viewing this thread, I think you would find the following articles of great interest. They are written very simply and give a lot of information.
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-risk-factors
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-prevention
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-what-causes
http://en.wikipedia.org/wiki/Alcohol_and_cancer
http://www.cancer.org/Cancer/Non-HodgkinLymphoma/OverviewGuide/index
http://www.ncbi.nih.gov/pubmed/11079174
That is all for today.
Sylvia
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Hi Sylvia,
Thank you for the links. I haven't had a chance to read them all, but I will read them over the weekend. I just wanted to post a quick reply to let you know that Natalie's second AC infusion went as well as to be expected. I sat with her the whole time then went food shopping for her and picked up meds. She seems to be having an easier time with the AC.
Unfortunately, not so great news about Karin. It seems that she has a mass on her liver and is going to have a scan on Monday. I'm just so upset and sad!
I will be reading along on the boards, but probably won't post for a few days. I need a little break...although, a break is never really a break. Cancer is always on my mind throughout the day it seems. Anyway, sorry for the sad post.
I hope you are doing well. Have a nice weekend. It's supposed to rain all weekend, but hopefully there will be just a little bit of sunshine.
Tonya
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Hello Tonya
Thank you for your latest post. I was so glad to know that Natalie's second AC infusion went as well as can be expected. She just needs to get a lot of rest, drink plenty of water and eat nutritiously in-between her treatments. I also found a gentle walk to be helpful. Is she on sick leave during her treatment? I know some women are and others are not. I was retired, so it was not a problem, but I think I would have found it difficult to carry on working. I found ginger and lemon tea helpful and seemed to want to eat mashed potatoes and hard boiled eggs!I was so sorry to hear about your sister Karin and I do hope it will not be bad news when she has her scan on Monday and I can understand how upset and sad you feel. It must be so difficult going through all of this with two sisters, dealing with this awful disease. I do hope that you are all getting a lot of support from family and friends and that you will have counselling, if you feel you need it. It is so helpful to have people with whom to talk and express your feelings. I had support from hospice care nurses during all of my treatment and I found it helpful. They used to come to my home and we used to talk over a cup of tea. They were very helpful in obtaining anything I needed. My husband used to go to weekly support group at the offices of these nurses. I also went for a little bit of counselling at the cancer charity in the grounds of the hospital where I was receiving treatment.
I can understand how cancer is on your mind all the time. It certainly happened to me, but also to my husband who was taking care of me. You must look after yourself and have time for yourself.
I do not know your family circumstances. Do you all have husbands and children that can help? My advice to all of you is to get all the help and support that you can.
I am alright. I have learned to live my life one day at a time and can now put cancer at the back of my mind most of the time. However, I have no illusions about the fact that this awful disease never leaves you and that it can come back at any time.
My elder brother, Ken, died very quickly of cancer in 1995. He died within weeks of diagnosis, from disseminated adeno carcinoma and the primary was unknown. He was 56.
We could do with some of your rain here in the UK. It is unusually warm for April and we are having the driest spring in seventy years. This probably means that we are in for a very wet summer!
Try to be strong for your sisters and keep looking forward. There are lots of drugs available now, especially in your country.
Sylvia.
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Hello Everyone
I see that the number of people viewing is going up, but the number of people posting is disappointing. I hope all of you had a good Easter weekend and that you are enjoying this early spring bank holiday. Since I know that most of you are young or middle-aged women, I was wondering how many of you were interested in the wedding of William and Kate yesterday.I hope you are all doing well, especially those of you with recurrence or metastases. How are you doing FreddieDLH, Josephine, Penelope?
I saw on another thread that someone with metastases had gone on the chemotherapy drug Abraxane.
I would like to send a special hello to Tonya, who is so concerned about her two sisters.
Is there anybody who has any new information about progress on TNBC? If so we would all like to hear from you.
Sylvia
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Hi Sylvia,
I just saw your post and wanted to write a quick reply. My sister Karin has been in the hospital all week, but she should be getting discharged either tomorrow or Monday if she can keep her food down. She had a bout of diarhea and vomiting. Her Pet scan results were a mixed bag...there is the spot on her liver, but there is no progression elsewhere.
Natalie is hanging in there. So far she is tolerating AC a lot better than Taxotere. Only 2 more to go, but then I'll be even more worried sick about her once chemo is done.
That's about all for now. I've had a migraine headache all day so I think I'm going to try to relax a little bit with my dear hubby and 2 cats.
Tonya
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Hello Tonya
Thank you for your posting. I am sorry to hear what a rough time Karin is having. It will probably be good for her to come home from the hospital. I feel a person is always better off in their own homes with their own family. There must be tablets to deal with the vomiting. I am a great believer in ginger in any of its forms. This can be ginger capsules, ginger root pieces in hot water, ginger and lemon tea, ginger ale and ginger cookies.
I was glad to hear that Natalie is doing better with the AC than with the Taxotere. From my own experience Taxotere did take a greater toll on the body, loss eyebrows and eyelashes, browning and loss of toenails and problems with the soles of the feet. She is nearly finished with the chemotherapy, which I found to be the hardest of the treatments, especially as it goes on for so long.
Be strong for both of them and take care of yourself. Enjoy your time with your husband and cats. In the ups and downs of our journey through life, happy moments with family and friends are precious. Enjoy the moment because we never know what is round the corner.
I am going to see my oncologist on May 6th, for a regular check up. This is always an anxious time.
Sylvia
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Hello Everybody
I hope you are all aware that some members are receiving junk private messages from different sources, promising them cures for cancer. I have received two. One was signed AliasSmith and the other JohnWest. I suggest you do as I did and that is to delete them immediately without reading and notify the moderators of your concern. These people are preying on vulnerable people.
Wishing you all well
Sylvia
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Hello Sylvia
I'm new to forums but have been inspired to reply to you to thank you for all the sensible advice you've given on the subject of Breast Cancer.I've read quite alot of info lately & have found it a rather frightening experience. Most of the information paints a poor picture but like so many other women, I'm drawn to to it to find a glimmer of hope out there.
In a nutshell, I'm a 57 year old woman. I don't drink or smoke ( and never have). I'm slim, eat healthily & work out in the gym several times a week. My husband & I go out for long walks.I attend routine 3 yearly mammograms & I examine my breasts monthly. We have a 17 year old son living at home. BUT ....at the end of March I woke with a dragging pain in my outer breast. My initial reaction was that I'd pulled a muscle in the gym. I found a lump instead. You can imagine the sinking feeling I experienced.I saw my GP straight away & was referred to our local One Stop Breast Clinic.They were marvellous.
The Consultant examined me, I had a mammogram followed by guided Ultrasound biopsies and then saw the Consultant later once the results were available.
From the initial pain to surgery took just 16 days. I had a lumpectomy & Sentinel node mapping.Results 9 days later confirmed my Cancer was triple negative & fortunately no Sentinel node involvement. I see from your messages that there don't seem to be many older women who present with Triple negatives so I'm one to add to the tally.
I'm about to undergo the same Chemo as yourself over 6 cycles, followed by Rads for 3 weeks.
Like you, the thought of a Triple negative result feels me with dread as I cannot have Hormone or Herceptin backup. It's a roller coaster ride. Wanted to share this with anyone who is in a similar position. From what I understand, by continuing with my healthy lifestyle & exercise regieme, I'm doing all I can to try to prevent a reoccurance. Any thoughts??
Wishing everyone out there success on their own journey.
Carole
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Hello Carole
Thank you very much for your posting. I was so sorry to hear that you have been diagnosed with TNBC. I think you have done the right thing by writing your thoughts and experiences as they come to you. Please do not be discouraged by the negative articles that appear about TNBC. I am sure there are many of us out there surviving this particular kind of breast cancer. The only reason that TNBC is regarded in a negative way is because the medical establishment does not have anything to give us after the conventional treatment of surgery, chemotherapy and radiotherapy. The positive side is that Herceptin and Tamoxifen both have nasty side effects and they do not always work. At least when your treatment is finished, you can keep your body in good condition with good nutrition, exercise, rest and relaxation.Chemotherapy is the longest part of the treatment and probably the most challenging. Do not worry about the actual process. Just go to your treatment, relax while you have the drug intravenously and then come back home, rest, relax, drink plenty of water and look forward. You can get through chemotherapy and if you have problems there is always something available to help them.
You have been very sensible in getting prompt treatment and before you know your treatment will be at an end.
I have no idea what caused my breast cancer. Like you, I had always looked after myself and when I had the diagnosis, I was shocked and distraught. I cried a lot for about a week and then I became very calm, but I delayed a lot before getting treatment. Once I had decided on the treatment, I just kept looking ahead.
Like so many of us, I would dearly like to know what caused my cancer and why it was TNBC. I would also like to know why it affects more young women than older post-menopausal ones. I look very young for my age and had never been ill before, so I wonder whether my body was younger than a lot of women my age. I do not know whether we shall ever find a cause. The latest research seems to indicate problems and mutations with genes, with faulty genes causing hereditary breast cancer and silencing of cancer protective genes and mutating genes implicated in TNBC. I do not think there is any proof, but I feel stress plays a part in the development of cancer.
The good news is that it appears that the longer those of us with TNBC stay in remission the less likely it is that we shall have recurrence or spread.
I wish you all the very best and please let us know how you get on with chemotherapy. If you have any problems or any side effects, we shall try to support, give helpful tips and, above all, encourage you to look forward to the end of treatment.
Thinking of you.
Sylvia.
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Hi Sylvia,
I wanted to send you a quick hello and ask how your checkup went on Friday?
I'm typing on my phone so I'm sorry for the short message.
Hope everyone is doing well.
Tonya0 -
Hello Tonya
Thank you very much for thinking of me and asking how my check-up went on Friday. It is so kind of you to think of me when you have so much going on with your two sisters. I saw the oncologist, she did the usual physical examination and said that everything was fine. She chatted to me and said how glad she was to see me looking so well and feeling so well. She said that it was quite a journey we had made since my diagnosis on June 20th 2005. She is a very fine person and I am so glad that she is my oncologist. I am not far off the six year mark now, so I hope that will give hope and encouragement to all of you out there.Please take care of yourself, Tonya, and keep us informed about your sisters.
Sylvia
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Hello Everybody
I hope you are all doing well and feeling better as summer approaches. Please let us know if you are having problems with any of your treatments and share your feelings with us, whatever they are. Please let us know as you end treatment and as you reach milestones in this cancer journey that we are all on.As you will know from my previous posting all went well on Friday with my check-up. I still wonder whether there should be a more in-depth check-up than the physical one that we have here in the UK. Is anyone having more in-depth check-ups?
I thought you might like to know about a recent book that I have just finished reading about cancer. The title is "Vital Signs for Cancer" by Xandria Williams and it was written in 2010. This book is about protecting yourself from the onset or recurrence of cancer. It is easy to read and understand and the main theme is that cancer is a long process and not simply a tumour. The tumour that is generally accepted as the evidence of the existence of a cancer is in fact the end product of a long and usually symptomless process of cellular changes. Her next book will be "Cancer Concerns". If any of you have read it I would love you to share your views.
On a different matter, I was wondering whether any of you actually received copies of your pathology report. I get the impression that this happens in the US and that American women seem to have detailed information about their pathology reports. I was told very little. For example, does anyone know anything about onco-type tests. I saw somewhere that a score of 51 equals a 34% chance of distant recurrence.
Is anyone familiar with LVI and BVI? Apparently they mean lymphovascular invasion and blood vessel invasion. Lymphovascular invasion means that cancer has infiltrated the lymph vessels and blood vessel infiltration means that cancer has infiltrated the blood vessels. Apparently, you can have lymphovascular invasion but not have positive lymph nodes. It seems that this could be because the invasion has not spread to the lymph nodes or because it has bypassed them and spread to other areas of the body. LVI is an indicator that treatment should most likely include chemo or hormone therapy.
Finally, are any of you being tested for parathyroid hormone levels, blood calcium levels, thyroid hormones and vitamin D levels? Apparently it is important to keep a check on all of these. You will remember that I had high calcium levels when diagnosed, my parathyroid hormone level was tested and was high, and I was diagnosed with an over-active parathyroid gland, now cured. Some research indicates a possible connection between this and breast cancer. I have read about low or deficient vitamin D levels and breast cancer ( and other cancers), and in the Vital Signs for Cancer book there is a long section on pre-disposing factors for cancer and one of them is an under-active thyroid gland.
All of this makes me realise how important it is to keep a check on every aspect of your body. I feel that regular checks plus good nutrition and exercise are all very important for everybody, but especially those of us that have been diagnosed with breast cancer and other cancers.
That is all for today. Best wishes to all of you.
Sylvia0 -
Hello Everyone
I am posting just a few snippets of information that I have gathered from reading etc. I am always looking out for information about TNBC, possible risk factors and predisposing factors. I have a particular interest in glands, nutrition, the environment, and family, with reference to the development of breast cancer. Because of my own former problems with an overactive parathyroid problem and research about a possible association with the development of breast cancer, I have now become interested in under-active thyroid problems and also low vitamin D levels and their association with breast cancer.I have recently read that post-operative radiation therapy in patients with breast cancer can damage the thyroid and that patients should get repeated blood tests. This interest has become even more significant because at my last routine blood test my GP told me that I was borderline for an under-active thyroid and she might want to put me on thyroxine. So far I have resisted this, because I have read that, when thyroxine medication is used to replace the natural thyroxine that the thyroid should be producing, the thyroid becomes lazy and produces even less, which makes the situation worse. Have any of you had problems with these glands, either during or after treatment?
Have any of you read, as I have, about an association between breast cancer and hypothyroidism? Are any of you taking any kind of medication for hypothyroidism (under-active thyroid)? I know that low iodine levels are associated with this problem of the thyroid. Apparently, there is a 24 hour urine test that you can have to check for your iodine levels.
I thought you might be interested in an article that I found in the Independent newspaper on May 12th, the title of which is "Sunshine vitamin" pills may extend lives of cancer patients. It is about an oncologist at St George's Hospital in London, who tests all of his cancer patients for the level of vitamin D and prescribes supplements to patients with low levels. He appears to think that vitamin D may turn out to be more useful in improving outcomes of early relapse than very costly drugs. There is a conference on Wednesday May 24th in which other specialists will present evidence for the role of this vitamin in reducing cancer.
Calcium supplements, along with vitamin D, also appeared to play a role.
My own opinion is that it is probably prudent for breast cancer patients to take vitamin D and calcium supplements, because the treatment that we have can affect the bones and lead to osteoporosis. I think my own osteoporosis, which developed after treatment, was probably due partly to that treatment and partly to the hyperparathyroidism that was diagnosed at the same time.
Another snippet that I came across was about tumour markers for cancer that can be detected in a blood test. I found CA125 is a marker for ovarian cancer, CA15-3 for breast cancer and CEA(cancer embryon antigen) can be found when there is cancer in the lungs or breast, but most commonly indicates colon cancer. I do not understand why, in the UK on the NHS, after routine treatment, we are not tested for breast cancer markers in the blood, so that we can be treated before more tumours arise. I think there needs to be more preventive cancer treatment like blood tests.
I think that is about enough for today. Hope you enjoy your Sunday. Here in Devon it is sunny but cool and dry. We are desperate for rain.
Sylvia.
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Hi it has been two years since I was first diagnosed with TN, I thought DCIS but can anyone confirm I note most TNs on this site were IDC? I was 40 when dx.
Anyway, I found it impossible to find other TNs in the UK when I was going through treatment. I found a lump and had first scan Ultrasound on 11 May 2009 and they immediately told me it looked like cancer, surgeon saw me same night and said he was 95% certain. I had lumpectomy on 13th May followed by a subsequent re-excision to clear margin and removal of all nodes he could reach as they all looked infected.
Treatment was 4 lots EC followed by 4 of taxol. Only reacted so badly to the Taxol that they put me back on the EC. I then had to have a further operation to ensure they really had everything in October 09 and then did 6 weeks of rads daily (weekdays only).
Have had regular checks 3 monthly and mammogram annually, MRI also annually (on my request). This year has been scary as my Mammogram was scheduled for 11 May (anniv of dx). Also have a rash on same breast and found lumps in my neck am really hoping it all proves to be benign but surgeon had to do biopsy under a general yesterday as one of the dodgy lymph nodes was too close to my jugular. Now it is a waiting game.
Just wish I had someone to talk to who gets it all and lives nearby, but that is just wishful thinking.
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Sylvia - I'm adding this thread to my favs in the hope it will inspire me to post here more often.
I seem to be doing fine - early June will be 2 years from diagnosis. So I feel that is a positive thing. However, a TN friend who started chemo about the same time as me at stage II had progressed to stage IV and died last week, and another TN friend recently became stage IV. We hear good things on BCO but it is also hard when there are bad things going on.
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Hello TEK2009
I am very sorry to hear that you are having some problems and I sincerely hope that everything will be alright for you. You have done the right thing coming to this site, because you can vent all your feelings and we all know how you must be feeling.You should ask your medical team whether you were diagnosed with DCIS or IDC. I think that with the 3 cm tumour it would be IDC. Most TNBCs would appear to be IDC and stage 3.
I can understand your difficulty in not being able to find other women with TNBC, because it was exactly the same for me, and it made me very anxious. The other women in my apartment block and in the vicinity all had hormonal cancer and after treatment were going on to Tamoxifen. Where are you located in the UK? It would be good for you to find a local support group. I must say I am surprised that your surgeon did not opt for a mastectomy, given the number of lymph nodes affected.
I had the same chemotherapy treatment as you did, epirubicin, cyclophosphomide, but then I had docetaxel (Taxotere). I think Taxol is paclitaxel. My oncologist said that docetaxel had fewer side effects than paclitaxel. It did affect my toenails and made me lose my eyebrows and eyelashes. I am not surprised that you had a bad reaction to Taxol. After a mastectomy of my right breast I had just three weeks (15 days) of radiotherapy plus boosters. Although I had a very large tumour I had just one node affected, the sentinel node.
I was surprised that you have had annual MRI scans. At my hospital in Exeter I have been having only regular physical check ups. What made you ask for MRI scans?
Please let us know the result of your biopsy and we shall all be keeping our fingers crossed for you.
You could ask at your hospital whether they can put you in touch with other people with TNBC. It would help you so much. Please keep in touch.
Sylvia
Mammary ductal carcinoma is the most common type of breast cancer in women. It comes in two forms: invasive ductal carcinoma (IDC), an infiltrating, malignant and abnormal proliferation of neoplastic cells in the breast tissue, or ductal carcinoma in situ (DCIS), a noninvasive, possibly malignant, neoplasm that is still confined to the milk ducts (lactiferous ducts), where breast cancer most often originates. Some doctors feel that DCIS is overdiagnosed and that many women who are treated for DCIS do not actually have cancer.
This is a definition from Wikipedia.
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Hello Gill
I was so glad to see that you had posted on this thread and I am glad to know that you are making it one of your favourites, as I am really dedicated to trying to help everyone with this much dreaded TNBC. I regularly read Calling all TNBCs and I think Titan did an excellent thing when she implemented the thread. I have been much saddened by some of the latest news and I just wish the medical experts could come up with something more effective to treat this form of cancer, especially when it recurs or metastasises, so that there are no fatalities. My heart goes out to these young women that are dying and leaving young families behind.I was so glad to know that you are doing fine and hope that you will do something special on the second anniversary of your diagnosis.
I am so sorry to hear of the death of your friend, and surprised that at stage 2 she progressed to stage 4. It would appear that the size of your tumour, your node status and the stage of your breast cancer, has little to do with whether you survive or not.
How is your other friend doing at stage 4? What kind of treatment is she being given and how is she coping with it?
It is true that we do hear good things on BCO but it is very difficult to cope when bad things happen. It seems as though quite a few people have died, but I suppose we have to focus on all of those that are surviving. I wonder how we TNBCs compare to the triple positives and the hormonals who are double positive but HER2-. Do you think that TNBCs are more aggressive than HER2+?
Do you think that more women are being diagnosed with TNBC as a percentage of the population in the US than in the UK? Do you think that the younger you are the worse the prognosis? What I would dearly like to know is why this awful TNBC affects younger women more than older ones. There are so many questions that we need to be answered.
Please keep posting, as it is useful to get everyone's views.
Greetings from quiet Exmouth, UK.
Sylvia
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Hello Everybody
I have just re-read all the postings since I started this thread eight months ago. I wanted to see how useful all the postings would be to those newly diagnosed with TNBC. I tried to put myself in the position of a newly diagnosed patient reading the thread for the first time. I felt that in that position I would go to the first page and gradually read everything until I got up to date. We have together made a good and informative thread and I think we have a good guide from diagnosis to end of treatment and life after treatment.Needless to say, I was refreshing my mind about the details of those who have posted and, naturally, wondering about how each of you are going. It would be nice to hear from Jinglebell, FreddieDLH, Spamy61, Micheyd, Karen3, Newalex, Josephine, Gillyone (thank you for your recent post and update), PenelopeP, Hymil, Brena, Chilimac, Eskimo3 and TEK2009 (thank you for your recent posting).
It would be nice to hear from those of you going through your initial treatments of chemotherapy, surgery and radiotherapy. Are you all doing well? Especially in my thoughts are those of you dealing with recurrence or metastases. This must be really challenging. I would like to say a special hello to Josephine, who was facing some difficult challenges. Please let us know whether you are alright. Hello to Chilimac. How are you and your sisters doing? Hello to Eskimo3. Good luck with the chemotherapy that you were due to start in May.
Let us know if any of you are being given new drugs.
That is all for now. Have a good weekend.
Sylvia
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Hello Everybody once again
I just wanted to refer you to some research regarding ACE inhibitors for high blood pressure and an increased risk of breast cancer recurrence. The link is as follows:
http://www.breastcancer.org/risk/new_research/20110422.jsp
These links also make interesting reading, if you have not already looked at them.
http://livegreen.breastcancer.org/
http://www.breastcancer.org/risk/understand/
http://www.breastcancer.org/risk/factors/
http://www.breastcancer.org/risk/new_research/
Sylvia
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Hi Sylvia - I am impressed with all the research you do. I, for one, seem content to let others do it. My stage IV friend is fairly new to stage IV and trying a new chemo combo and trying to get to grips with this new reality.
Sylvia - you are almost 6 years out from dx. Do you feel fairly secure in that it is unlikely to recur by now? Are you still dealing with bc on a daily basis?
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Hi Sylvia and all my TN sisters in the UK
Just to let you know that I am doing fine. It's now 16 months since my operation and still NED - I was told by my surgeon that the 'basal type' triple neg has a high chance of recurrence up to Year 3. My breast surgeon wants me to consider having my ovaries removed as I have a BRCA 1 mutation of 'unknown significance' and BRCA type cancers in my family. He has also recommended MRI surveillance allongside the mammogram so I have been referred back to the Oncology team and am due to see them on 20th June. I do still worry about recurrence - I had neoadjuvant chemo and I know that the cancer was resistant to treatment. But, as time goes on I am beginning to feel more confident about the future.
Hope you are all doing fine too XX
Karen.
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Tek2009 - Just sending my best wishes. I have read your last post and I wanted you to know that I have had lymph nodes popping up everywhere - groin, neck and more recently on my rib. The lump in my neck has been there for well over a year and the Oncologist ordered an MRI a month ago. The results were 'normal' though and I just have an enlarged submandibular (salivary) gland
. When I see the Oncologist in June I will ask them to have a look at the two lumps on my ribs - they are soft though so I really do not think they will be anything sinister - but better to have them checked. Maybe I had lumps and bumps before but simply did not notice them. The fact is that now I am looking for every small change.I really do hope that your tests reveal B9 too!
Karen X
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I am going to answer you in reverse, first Karen3, really sorry you have it too, hope yur nodes turn out negative, I will know by late tomorrow. I am concerned about the itchy rash as well as the lums in the neck, not least as IBC often presents with lymph nodes and a rash, also surgeon was concerned enough to remove the nodes last week. Still have fingers crossed that I am imagining all and it is just an infection, but am really scared as if it is cancer thats probably it, cannot find much on prognosis as I already have TN and this would be a spread and secondary. Nevertheless I am determined not to let it get me down. We cannot let these things win.
Thanks again
T
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Sylviaexmouthuk, it is great that you started this thread and that you are so active, have you come across much on IBC as a secondary or new primary after TN, I imagine not but thought I'd ask, as I mentioned above am still hoping it turns out to be nothing but an infection.
I think you are right IDC. Also I was confused re not having a mastectomy but in hindsight I do not know that it would have helped, since all the nodes were infected removing the breast probably would not have increased my chances. But then we never know do we. Only thing I realised through treatment was that the specialists did not really know much about TN. Did you find the same?
Thanks again
T.
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