Calling all triple negative breast cancer patients in the UK
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Hi Sylvie, thanks for that. I hope you are keeping well. I love gardening and i spend as much time outside as i can.I used to read all the time but with my bipolsr i find it hard to concentrate. Not a great tv fan - more listening to music but i do like disaster movies.
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Dear Sylvia and everyone else,
Firstly thank you Sylvia, I wish to say that I really appreciate this thread and find it one of the most informative of all the forums...although technically I suppose I shouldn't be here (not being from the UK), I think our medical training and system in Malta is pretty much identical to that in the UK, which is why I like to come in and read the topics which come up for discussion as treatment seems to be very similar to ours.
Haven't posted for some time, mostly because I had Taxotere last Friday and have been having quite a rough time, been utterly exhausted. I know I should try and get some exercise but the tiredness washes over me and I become totally useless..seem to be coming out of it today... my next hurdle is a meeting with the surgeon on Saturday week...we are meeting to set the date for surgery, as well as to discuss the kind of surgery I'll be having..My last chemo cycle is on August 12th, and apparently surgery will be abouit 5 weeks later. Surgeon will let me know whether he would prefer to opt for mx/lump, but I've already decided that I really want to go for a double mx, as I want to do everything possible to avoid this thing coming back again...he didn't sound very convinced over the phone, so could any of you who have relevant statistics about recurrence, especially in tnbc, kindly pass them on? I want to be as informed as possible when I go to meet him. Thanks.
I only have a very small walled garden, Sylvia, but I love it, although at this time of the year it's too hot to potter out in it most of the time. Main flowers here at the moment are the hibiscus, bougainvillae, stephanotis, lantana and plumbago...my pretty fuschias have all been savaged by the heat and the roses seem to have stopped flowering..because it is a walled garden the stone walls absorb the sun's heat and by the afternoon it is absolutely scalding. Only thing to do here on sunny afternoons is go for a swim, which I do whenever I can.
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Hello BernieEllen
Thank you for your post. I do hope that you will soon be back on chemotherapy, so that you can get it behind you. It is nice to know that we share a love of gardening. I find it very good for peace of mind and getting rid of anxiety. It is also a very healthy occupation. I can understand that your bipolar can affect your concentration and that you like listening to music. Is there any particular kind of music you prefer? I like all kinds, depending on my mood. I like French films, especially those that are slow moving, quite silent and deeply philosophical. I do like to laugh a lot as well and I enjoy Miranda and Not Going Out on the television. I think laughter is the best therapy of all.Best wishes
Sylvia0 -
Hello Maria_Malta
Thank you for your post and for your compliments about our thread. Please do not worry about not being from the UK. Anybody with breast cancer from anywhere in the world is very welcome to post. I think the more posts the better, because that way there is more information, views and support. I started the thread because I thought in the UK there seemed to be a lack of information about TNBC, perhaps not enough curiosity and not enough questions being asked about TNBC and breast cancer in general. I discovered breastcancer.org after I had finished my treatment and was looking for information about a possible connection between an over active parathyroid gland and the development of breast cancer. I have tried to make the thread a path of information from diagnosis to the end of treatment, as well as a path of support and somewhere to relax and let off steam if necessary. There are more views than posts, so I hope that no one is being put off by the words UK. Those of us that have experienced breast cancer, of whatever kind, and in whatever country, are all in this together. Everyone is welcome.Maria, I was so sorry to hear that you have been having a rough time with the Taxotere. I hope you will start to feel better soon. Fatigue was, for me, the worst and most consistent side effect of Taxotere. All you can do is rest and sleep as much as you need. It is probably worse going through chemotherapy during the summer months. I had my treatment from November to the end of April, so I avoided the summer. I do remember how hot it was when I was going through radiotherapy in July.
Let us know how you get on with the surgeon about your surgery. It really has to be your decision. I had no choice with surgery, as I was told I needed a mastectomy of my right breast. I would have wanted this anyway, because it made me feel that getting rid of my breast cleared up all the cancer cells. I would not have felt the same peace of mind with a lumpectomy. I would always have worried whether some cancer cells had been left in the breast. Of course, that is only my opinion. I have read that, as far as survival rates go, there is no difference between a mastectomy and a lumpectomy. I can understand perhaps that mastectomies could be more traumatic for younger women. As for a double mastectomy (known in medical terms as a bilateral mastectomy), I do not know what to advise. Perhaps others on the thread may have opinions. I do know that, when I am not wearing my prosthesis, I do feel somewhat unbalanced and wonder whether I should have had the left breast removed as well. I know that they advise a bilateral if one is BRCA+. I do know someone, with breast cancer in the family, who has had a prophylactic bilateral. I think that takes courage. I was horrified at the thought of having a mastectomy, but it was not as bad as I had envisaged.
With breast cancer, of whatever kind, it is difficult to know what to do for the best, because tumours can pop up anywhere in the body. This is the frightening thing. We can have recurrence in the same breast if we have a lumpectomy, recurrence along the line of the mastectomy scar, metastases to the lungs, liver, bones or brain, metastases to the other breast, or another primary in the other breast. Cancer is unlike any other disease. We just have to learn to live with it, do all we can to look after ourselves, keep informed and live the day. You will find that, after you finish treatment, you will be able to keep it at the back of your mind most of the time.
I was very interested to know about your walled garden. It sounds really lovely. I have learned the names of a lot of new flowers and I shall be trying to find them in my gardening book or on Google! I do love fuchsias! Do you like the heat? I find I have to seek shade, although, when I was in the south of Morocco, where it could be 45 C in the shade, it did not seem to bother me, but that was many moons ago. Here in the UK, especially in our part of Devon, we desperately need rain.
Best wishes Maria and I hope those viewing this thread will post to support you.
Sylvia.
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Hello Everyone
I just wanted to say how much I appreciate the valuable posts that come in from our American friends. You get so much information in your country. You are always most welcome on our thread.Best wishes
Sylvia0 -
Hello Everyone,
I thought you would like to know that I have just found out that Dr David Servan-Schreiber died on Sunday in Normandy, France. You will remember that I wrote quite a bit about his book on this thread not long ago. His brain cancer came back in 2010 and apparently he was told that this time he would die from it. I read his book when I was first diagnosed with breast cancer in 2005 and found it truly inspirational. I re-read the updated version just this year. I truly believe the connection between diet and cancer, but do not believe that food can cure cancer, but I do believe it helps somehow with cancer. I feel quite sad today, that this man is dead at fifty and that there will be no more books from him. If you want to read more about him have a look at the thread on Alternative and Complementary Medicine.
In case you have forgotten the title of the book is Anticancer: A New Way of Life. We can all be encouraged by the fact that this man survived for twenty years after a diagnosis of brain cancer.
Sylvia
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So sorry to hear about the dr dying, i have read uo on on him. Sylvie you are a star with the information you provide.
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I will have to look for the Anti-Cancer Diet. Yes, Sylvia, you have provided a wonderful informative thread but I also feel so soothed when I read your posts. I think about other things - like w"alled gardens and the sea.
I was fortunate to go to Jekyll Island, Georgia the week before my mastectomy. The island is a state park with only a portion developed. The remaining area is natural marshland and beach. Structures are limited in height, and most of the residences were built in the 1950s, with the exception of the mansions surrounding the Jekyll Island Club Hotel. The mansions have been restored and surrounding them are beautiful, mostly formal gardens, and enormous live oak trees whose limbs tumble along the ground. The Spanish moss was very lush. On my visits to the beach, I encountered numerous sea turtle nesting sites (loggerhead) - I saw probably 20 such sites. The sites are protected by plastic netting and a small sign. Some of the turtles have possibly hatched by now; I believe the process begins in July. There is an excellent sea turtle facility on the island with information about the turtles and a turtle infirmary where they are rehabitated in large tanks of water.
Jekyll Island is, so far, my favorite place in this world. I started going there when I was a young teenager. I hope to return late this fall if possible.
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Hello BernieEllen, christina1961 and everyone else.
Thank you BernieEllen and christina1961 for your posts and for your compliments about the thread. It is so interesting to get news about your lives in the different countries and descriptions of some of the beauties of nature. It is good for everyone to switch off breast cancer from time to time and not to let it take over our lives. I know this is very difficult during the period of chemotherapy, which can be all-consuming, especially if a person does not feel at all well.I did visit Northern Ireland back in the 1970s, when one of my brothers was lecturing in French for two years at Coleraine University. He was living in Derry at the time. I loved the beautiful scenery and I have vivid memories of a visit to the Giants Causeway and a picnic on top of cliffs as the sea raged down below. We did go into the Republic a couple of times and I loved the greenery of the countryside and the liveliness and friendliness of the people.
Christina, your description of Jekyll Island was very deep and heart-felt and I could see that you love it very much. I think it was a very good idea to go there before facing up to a mastectomy. The scenery sounded really beautiful. I think I would have been very excited to encounter those sea turtle nesting sites and the turtles. I can understand why it is your favourite place.
I would welcome any more descriptions about places in Georgia or where you live. Although I visited the US when I lived in Canada, I went only to New York State and New York city, parts of Maine, the beautiful countryside of Vermont, New Hampshire and Massachusetts. I do remember in the hot summer heat arriving in Salem and the wonderful coolness of the sea air there.
I was wondering what other threads you all read. I always browse through the list of Active Topics. There seems to be a lot of activity on the Stage IV Metastatic Breast Cancer threads and the Going Through Chemo threads. I feel these are the most challenging parts of the breast cancer treatment. I would like to offer our support to Suze35 who is suffering a lot of aches and pains. Hang in there. You can get through all this.
Remember all of you that we are here if you need support.
Sylvia
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Hell Everyone,
I have been reading some of the other threads out of interest, as I do like to keep informed. I do get confused about breast cancer that can be cured and breast cancer that cannot be cured. We all know that when we are diagnosed with BC it is important to know the stage and we know that the stages basically go from I to IV and that there are categories within the stage, for example, stage IIb. If we are diagnosed with any stage before stage IV we are given treatment with a view to a cure, or such is my understanding. If we are stage IV or metastatic, we still have treatment options and can survive for a very long time with the treatments, but my understanding is that we are considered incurable and we shall be on and off treatment for life, with periods of being symptom-free. Since we all know that we can all be faced with finding ourselves suddenly at stage IV, I do not understand how we can be considered "cured" at any of the other three stages. I have been symptom-free for over six years, but I never consider myself cured. Since cancer can come back, even twenty years after diagnosis, can anyone ever consider themselves cured from whatever cancer they may have? I was wondering whether anyone reading this thread has been told they are cured. It seems to me that we can only say we have been told by the experts that there is no visible sign of cancer in our bodies. I know that with physical check-ups that I have, I still sometimes wonder what is going on in my body. Do any of you have these kind of feelings?
I started reading on one of the threads about sueps from the UK. I started reading the beginning of the thread and felt how frightened this woman was at just having been diagnosed. I then realised that all of her story happened in 2007 and that in 2011 she is still posting, having been diagnosed with TNBC IDC stage I grade 3. This is a story to motivate and encourage you all. This is someone with a family history of breast cancer.
Thinking about all this today, and I am a person that does a lot of thinking, I was wondering whether grade 3 is the highest grade that you can have. I have a feeling that it must be. I am still looking to find out whether anyone with TNBC has had a lower grade than 3. I know we all have different stages, but all of us with TNBC seems to have grade 3.
I have been reading some very interesting posts on another thread from bak94, suze35 and christina1961, and I have to say I have nothing but admiration for the way you are informed and the way you send out your support. I know you all have your own struggles with this disease, so my admiration is the greater. Keep up the good work.
I have also been doing a lot of thinking about the business of hormonal and non-hormonal tumours. That also seems to be a bit confusing, with the status being able to change. I know I was surprised when my oncologist mentioned to me once that my tumour had not necessarily started off as triple negative. There now seems to be differences of opinion among doctors about what constitutes hormonal and non-hormonal. I know that I was 0% oestrogen and 5% progesterone and that 5% made me PR-. As for HER2, I was negative, but my understanding is that, if you are HER2+ you need Herceptin, a monoclonal antibody, that fights HER2+.
Has anyone any comments about all this?
All for now.
Sylvia.To Maria_Malta.
I just wanted to let you know that I found the names and pictures of the flowers in your walled garden in my gardening book. They are really beautiful. Your garden must be a blaze of colour.
Sylvia.0 -
wow sylvie, so much info to process. I an stage 1 grade 3. Scary
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Hi Sylvia. There are a small number of people who post on the calling all TNs thread who are grade 2. But you are right, TNs seem to be overwhelmingly grade 3. Regarding the whole cure thing, I chatted with an oncology nurse about this. Some of us are indeed cured after surgery, or after chemo or after radiation or any combination of the above. The tricky part is we do not know who is cured as we do not really know what cures BC. Many of us, especially node negative, may well be cured after surgery, but we have no way of knowing who is and who needs further treatment. I know there are people who consider themselves cured. I used to think they had their heads in the sand. With a bit more perspective, I've decided it is not a bad thing. The alternative is to know you are not cured and that it could come back any time and live with this knowledge in your mind all the time. And whether you believe you are cured or not makes no difference whatsoever to a recurrence or progression to stage IV.
However I am with you. I do not know if I am cured. I simply believe I am NED right now and hope it continues.
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Hello gillyone
Thank you for your post. I do hope you had a good time back here in the old country.Thank you for letting me know that there are some women with TNBC who are grade 2. Do you think there is any connection between low stage and grade? I tend to think not, as there are women who are stage 1 and yet grade 3.
As far as who is cured and who is not, I would think that someone somewhere should be gathering statistics about whether node negative patients have fewer incidents of recurrence and metastases than those who have nodes affected. I know that, in this country, judging from the people I know, when nodes are not affected the treatment seems to be lumpectomy and radiotherapy, and then, if hormonal, Tamoxifen and Arimidex. I do not know if this is the same for TN. I know just one person with TN who had a lumpectomy and radiotherapy after neoadjuvant chemotherapy. She had a small tumour and no nodes affected. I believe her tumour completely disappeared after chemotherapy.
I agree with you that it is perhaps a good idea to consider yourself cured, but it is not something I can do. I find I have to make that special effort to look after myself and not take anything for granted. Like you, I think I have no evidence of disease right now and hope it continues.
Gillyone, what do you think about the debates in progress on some of the other threads about what percentage of hormones constitutes being diagnosed as TN? I am concerned that some women diagnosed as TN are, nevertheless being given hormonal treatment because they are, for example, 5% progesterone. I think you have to have a definite diagnosis of hormonal or not and be treated accordingly. What do you think? I know that, in the past, all women were given hormonal treatment in this country, and, of course, it would not have done those who were not hormonal any good, and possibly caused harm.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. Remember, knowledge and information make you powerful. Remember what Poirot said about the little grey cells: keep them working!!!I am sure you are going to be fine. Let us hope that the chemotherapy will greatly diminish your tumour or even make it disappear. Keep looking on the bright side.
Best wishes
Sylvia0 -
Sylvia,
This is an interesting topic for me as I just found out that I am 5-10% estrogen positive. I do not know what the recommendations will be but should have more information within the next few weeks as I am going to my oncologist soon and also obtaining a second opinion from another this month. If the cut off is 10% - am I 10% or 5% - why can't they narrow the range?
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Hello christina1961.
Thank you for your post. I have just been on Google trying to find out about oestrogen and progesterone levels with reference to a diagnosis of TNBC. I have been finding it difficult to get an answer to my question, which was "how low do oestrogen and progesterone levels have to be in order to get a diagnosis of triple negative breast cancer"? I then discovered your post. I shall certainly be very interested to know what your oncologist says.I am puzzled that you have only just found out that you are 5-10% oestrogen positive after having your mastectomy. I was told that I was TNBC after having a biopsy before I even started treatment. Did they not tell you that you were TNBC after your biopsy? If so, does it mean that this somehow changed during your chemotherapy treatment?
This all gets very puzzling. I have just read, while trying to get some information on Google, someone writing as a TNBC and talking about getting HER2 treatment! If a person is HER2+ they cannot be triple negative.
If a person is hormonal positive I cannot see how they can be TNBC.
We need someone to tell us where the cut off point is. I trust my medical team implicitly and my breast cancer surgeon told me that I was ER 0%, PR 5%, HER2 negative and that made me TNBC for which hormonal treatment was no good.
To everyone I have just discovered that, apparently, if progesterone levels fall too low for a sustained period of time, a woman may face an increased risk of breast cancer. Now I have to wonder whether I was living with low progesterone and not aware of it. I have also just read that there are health problems if your progesterone is too low and oestrogen is too high, and you are in what is described as a state of oestrogen dominance. Again, I would not have a clue what my oestrogen levels were before I was diagnosed with breast cancer. All I can say is that I felt fit and healthy and had never been ill until 2005. What a mystery this breast cancer business is!
You might be interested in looking at the following: www.wisegeek.com as well as www.answered-qustion.com.
If anyone has information about percentages of oestrogen and progesterone in a diagnosis of non-hormonal breast cancer, please let us know.
Sylvia.
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Hi Sylvia, (It's me, BKJ, changed my user id for security).
My doc is thinking about putting me on herceptin, and I am her2 +1 which is considered normal. I guess there are studies going that may show a benefit if one has a low positive for her2. He also is thinking of putting me on hormonals for 3% er and 0% pr. I am so confused! Those numbers are from my core biopsy, he wants any remaining tumor tissue tested after bmx to confirm those numbers. So I guess I have to wait and see after my bmx. I need to have him show me the studies for both of these. I have always been told I was triple negative, but maybe not? I do not want to take anything that will not do any good or may harm me, but my doctor researches everything and he seems to think this is the way to go. I will get a second opinion, but that may confuse me even more! I wish I could find more info on this!
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Sylvia,
In my case, I tested less than 1% estrogen receptors with the core needle biopsy. On the pathology report, the pathologist recommended that after surgery any remaining tumor be tested for estrogen receptors. When the second test was done, they discovered the 5-10% positive staining for estrogen receptors.
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Sylvia, did you happen to see this discussion on another thread? Scroll down to see the her2 study Orange1 posted. It is very interesting and must be why my doc is considering herceptin. I am a bit worried about heart issues, as I have had alot of ac, 8 years ago and again this time! All my heart tests have been really good so far, but I know problems can arise later on.
http://community.breastcancer.org/forum/80/topic/765352?page=1#idx_6
Here is an article on low er positive bc. Scroll down to the last paragraph.
http://www.medscape.com/viewarticle/747192 (Here is the last paragraph in case the link is not working:
Benefit Even in Weakly Positive Disease
One of the findings from this analysis is the strong evidence for substantial benefit, even in breast cancer that is only weakly ER-positive (10 to 19 fmol/mg).
This is relevant to current practice, according to the researchers. Although the guidelines for immunohistochemistry assays define ER-positive disease as that with 1% or more cells staining, there has been some uncertainty about whether to include the range from 1% to 10%. A low cutoff will minimize life-threatening false-negative ER results related to technical error, they note.
However, the benefit of tamoxifen at the lower ER levels was not significant, note the editorialists, although they add that the confidence interval is large and a sharp cutoff is not biologically plausible.
"Thus, another crucial message from this update is the need for accurate and sensitive immunohistochemistry assays ... to detect even low concentrations of ER and thus further identify potential candidates for adjuvant tamoxifen treatment," the editorialists write.
Lancet. Published online July 29, 2011.
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BAK, It has been a long day (back to work) today, but I am still having trouble making sense of the excerpt from the Lancet - should the second sentence in the second paragraph read "Although the guidelines for immunohistochemistry assay define ER positive disease as that with 10% or more cells staining, there has been.....?"
Thanks, - and really interesting, by the way - the ER receptors they found in my residual tumor were reported to be 5-10% - so is it 5% or closer to 10%? And if it is 8%, could it really be 10%? sigh. And was it some good news or just nothing of consequence?
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I think it is saying if you are 1% positive you are considered er positive, but there is confusion as to include 1-10% as positive. And then later it states there is no significant improvement for low positivity, but they don't know where to provide a cutoff point. It is all so confusing. For us, maybe there really is not a definitive answer, but you being at 8%, it may be worth it. Please let us know what your second opinion doc says. Do you tell your doctor you are getting a second opinion? It makes me feel like I am not putting trust into my doctor, but I do want more opinions. I also wonder if we should have our labs redone at another lab to confirm?
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Dear Christina, Sylvia and everyone else
Josephine here ready (but not willing) to return to UK after very relaxing holiday in Florida including Everglades andFlorida Keys (all the way down to Key West. Teenage children seemed to need lots of sleep so my husband and I explored Key West on our own!!)o
A quick note regarding positivity (ER, PgR, Her2 etc..) Histology is a tool to denote expression not function of the receptor. Secondly biopsies may contain normal breast tissue leading to hetergeneous results, and also (but less likely) tumours themselves canbe more mixed. My core biopsy indicated TNBC other than ER 4/8 +ve which was not confirmed by excision tumour. Despite this we agreed to do Tamoxofen, as research had indicated that even low expression could function!! My personal response to TX was awful (hot flushes up to 20 per night and continual broken sleep) acupuncture helped marginally. Despite TC for over 12 months I developed mets and the one bonus of stage IV TNBC was kicking the tamoxifen into touch (however, I would do the same again and again). I can explain in more detail about the 'chemistry' behind these observations, but quite simply low expression of a receptor does not mean it will not respond to therapy.............similarly ER +ve individuals often become tamoxifen resistant. I suspect Her2 expression and response is even more sensitive!!
regards for now........returning to the UK
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Thank you, Josephine.I appreciate the information very much. I wish the tamoxifen had worked in your case. I am glad you are able to travel and see some of the most wonderful parts of Florida (St. Augustine is another place I love.)
I've been to the Everglades and the Keys before many years ago (1980) and I never wanted to leave. The sunsets were the most beautiful I had ever seen. Back then I was so comfortable in heat, too - the hotter the better. I loved the atmosphere in Key West - no one is ever in a hurry.
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Hello bak94.
Thank you for your post. This confusion about what is negative and what is positive is something that everybody could do without. It is traumatic enough being diagnosed with BC and having to enter a world of biopsies, scans of all kinds, surgery and stays in hospital, chemotherapy, radiotherapy, drugs of all descriptions, without having this additional worry. It is difficult for me to know what to say, because I am not a doctor. All this latest discussion about low positives etc. is very worrying. I must admit I have never heard of HER2+1. I thought a person was either HER2+ or HER2- and that if you were HER2+ the monoclonal antibody Herceptin was the miracle drug. A friend of mine who is triple positive had Herceptin with her chemotherapy treatment and then had injections of it for some time after her treatment. She is going into a trial for a new drug in October. If that were me, in your situation, I would try to get more information about this, as my understanding is that Herceptin is very hard on the heart.I cannot understand why you would be on hormonal drugs for 3% ER and 0% PR. I can understand your confusion. With doctors doing this and using hormonal and monoclonal antibody drugs, how can they class a person as TNBC?
Do you think that doctors have suddenly changed their definition of TNBC? Presumably your doctor diagnosed you as TNBC after your core biopsy, so why would this have been done if it was not so? If I were you I would definitely go fer a second opinion and I would try to find a female doctor. I agree with you that we all want to avoid taking unnecessary drugs. Our bodies have already been compromised by our treatment and we need to keep them as healthy as possible. For you this is the second time round and it must be so difficult.
I hope that everybody will keep looking for information. We owe it to ourselves. We all wish you lots of luck.
Hello christina1961. Thank you for your post. It is very difficult to know what to say.
It seems as though it is the luck of the draw what shows up on the core biopsy, which is only a very small part of the tumour. I find this, with hindsight, all very hit and miss, because, on the basis of the core biopsy, you are told what kind of BC you have. Now it looks as though, when you have surgery, and your tumour is tested, this can change. I suppose it does not make any difference with the chemotherapy treatment, because we all get basically the same, whether we are TNBC or not, except if we are HER2+ Herceptin is given, but that is also fairly recent. The radiotherapy is the same for all. It is after treatment that the difference kicks in, and if you have a diagnosis of TNBC I cannot see why you would have five to ten years of drugs such as Tamoxifen and Arimidex.
Is this the start of something new and we are going to get a mixed treatment after the basic treatment, based on percentages of hormone? I find this all of great concern. Sometime ago I read that taking Tamoxifen for long periods can end up causing TNBC. These hormonal drugs have all kinds of side effects.
Please let us know what happens and how you get on.
Sylvia.
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Sylvia - I just wanted to pop in and thank you for thinking of me! My MO thinks I am developing chemo-induced arthritis, but it is pretty mild at this point thankfully. I'm going to try accupuncture at her suggestion, and then possibly see a specialist down the road if it gets worse. Geez I hope not!
I'm following the discussion on ER positivity with interest! I am definitely negative on surgical pathology, but it is fascinating. And sad that we have to make some treatment choices based on such limited information.
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Hello again bak94.
Thank you for all the information and links you posted. I found it all very interesting and I am sure others did. It is hard to know what to say, as I am sure that all of us on this thread have got it into our heads that, having been diagnosed with TNBC, that is what we have. My medical team gave me the impression that 5% PR was negligible and that I definitely had non-hormonal BC and that Tamoxifen etc. would be of no use.
I hope that drugs are not just being used for the sake of it. I know that, in this country, pills for high cholesterol and high blood pressure would appear to be given out like smarties.
Sylvia
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Hello Sylvia and everyone,
Didn't have time to check in for a few days and found pages and pages of new stuff!!! I've no idea what % negative I might be, nor whether I could be Her2+1.... will find out next time I go to the clinic..I was only told I was triple negative but was never given any figures...thanks all for bringing this up as it sounds like it's something we should know.
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Hello josephine_. I had a very strange feeling when I saw your post, because, with all this discussion about what is positive and negative, I thought I need to call in josephine for her views and I was going to send out a message to you to that effect! I then found your post, so it was a bit like telepathy.
I was very glad to know that you have had a relaxing holiday in Florida. I am sure you needed that break. I have been told by a teenager friend of mine that all teenagers sleep a lot. It certainly seemed to be the case with my nieces when they were teenagers. It is funny though, because I do not remember being like that.
Thank you for your valuable information. I was surprised to know that with a TNBC diagnosis you had been on Tamoxifen. Do you think this was because you went privately? I have no idea what goes on with the NHS with TNBC and people getting Tamoxifen if they have a certain percentage. The women that I know are all survivors of hormonal cancer and I know that they are on or have been on Tamoxifen and/or Arimidex. I had terrible anxiety about all this back in 2005/6 because I was not hormonal and was told my prognosis was not good, because of no treatment after the usual orthodox stuff.
I think the important message that you have given us all is a low expression of a receptor does not mean it will not respond to therapy. Your other important message is that Tamoxifen does not work for everyone. I know that there are Tamoxifen failures.
Please keep posting josephine_ and we all hope you are managing to keep well.
Sylvia.
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Hello Suze35.
Thank you for your post. I was so sorry to learn that your MO thinks you are developing chemo-induced arthritis. I am glad that it is mild at the moment. Is there anything that can be done to stop it progressing further? It is so awful what this BC treatment does to our bodies. It keeps us alive but we do pay a high price. Let us know how you get on with the acupuncture. I have never had it but I am told that it can work wonders. You are really going through the mill at the moment and we are all thinking of you.I am finding this discussion about ER positivity interesting as well and am learning a lot. I agree with you that it is sad that we have to make treatment choices based on limited information. Thank goodness the internet has opened up so much information for us as long as we research carefully and filter out the good stuff.
These past few days I have begun to wonder whether there is much meaning in hormonal and non-hormonal. I now imagine a tumour that has got a bit of everything in it.
While I have been researching I came across the term oestrogen dominance and about all the oestrogen we are taking into our bodies from outside sources. I am going to look into all this.
Let us hope more rapid progress can be made into this awful disease. I often read Titan's thread and have felt so much sadness of late for all these newly diagnosed women. I feel there is something very wrong for this to be happening. Cancer was always said to be a disease of old age but that is no longer the case.
Keep posting Suze35. You always have something interesting to say.
Sylvia.
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Hello Maria_Malta. Thank you for your post. I hope you are feeling much better now.
Let us know if you do find out your percentages next time you go to the clinic. We have to remember that this information belongs to us. There does not seem to be any hard fast rule about what we are told and what is withheld. I know that in my own case, as soon as I was diagnosed, I spent a whole week reading the Cancer Directory by Dr Rosy Daniels, wrote out a list of questions, put them in a letter to my breast cancer surgeon and when I went for my next consultation, she went through them all for me and gave me answers where she could.That is all for today as I have written quite a lot and am feeling a bit tired and suffering from the heavy humidity that we have in Exmouth that we have at the moment.
Best wishes. Sylvia.
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