Calling all triple negative breast cancer patients in the UK
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Hi TEK2009
I remember when I was first diagnosed, the Oncologist told me that they were at a bit of a loss with TN breast cancer. They wanted me to have neoadjuvant chemo so that they could monitor my response with regular MRI's. I definately got a sense that they found my type of cancer a challenge. I do wish you well with those tests. It's never easy waiting for results but I will be thinking of you.
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Sylvia,
This is a very informative thread and I enjoy reading it! I hope I can join even though I am in the US!
TEK2009, I hope everything turns out benign. Please keep us posted.
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Hello Everyone and special Hellos to Gillyone, Karen3, TEK2009, Britchick and Christina.
I was so pleased to read all your postings this morning.Gillyone: I do hope that the new chemo combo has some positive results for your friend. Do you happen to know what the drugs are? It is useful for all of us to have names of drugs, because we do not know when we might need them.
You ask whether I feel fairly secure since I am almost six years out of diagnosis. All I can say is that I do not have breast cancer on my mind all the time. I get on with my life in a normal way and the anxiety takes over when a check-up is looming. When I am waiting for my appointment I am very aware that, once I go through the door of the office to my oncologist or breast cancer surgeon, a few words could once again change my life. It is not the sheer terror that I went through before being told I had breast cancer and the fear and anxiety as I went through treatment. At that time, being told that I was not hormonal positive did not register as being worse, especially as one of the nurses said that it was a good thing to be HER2-. As I have said before, triple negative was not mentioned in those terms. My negative status was described to me as not desirable, because I could not be given Tamoxifen or anything else as a preventive. It was my own research that brought home to me the problems of dealing with TNBC.
I know what they say about how, with TNBC, the further away you are from diagnosis the less chance of recurrence or spread. I tend to take that with a pinch of salt, because there are always exceptions and because I think that anything can happen with breast cancer and other cancers. I think you have to try to take good care of yourself, especially with nutrition, keep active, keep informed and avoid stress. If you do have recurrence or metastases, my oncologist tells me that there are chemo drugs to help. Looking after myself is probably how I am dealing with BC on a daily basis. The realisation that it can come back is always there at the back of my mind, even if I am not actively thinking about it.
I got to know about breastcancer.org long after I had gone through treatment and thought how helpful it would have been to be in touch with others when going through it. I decided to start this thread on TNBC because I thought so little appeared to be known about it in this country and I wanted to help.
Karen3: Hello Karen. I am so glad that you are doing fine. You have done nearly two years, so you now have to look forward to the third anniversary.
I know that with the BRCA mutations removal of the ovaries is often advised. It looks as though you have an important decision to make. I would think that MRI scans to keep a check on everything is an excellent idea. We shall all be thinking of you on June 20th. You probably know that I have strong feelings that our regular physical examinations are not enough and that I think it would be a good idea to have regular blood tests to look for cancer markers, rather than wait until tumours have formed. I can understand that you worry about recurrence. It is something that everyone having gone through treatment for breast cancer has to live with and accept as a possibility.
I think we all have to stop worrying about what caused our cancer and what might happen in the future. We have to live each day and be thankful for that day and live it to the full. It is the same about hoping for a cure. Cancer is a very complicated disease and I do not think there will be one cure. As time goes on I think it will become more and more of a chronic and manageable disease rather than a terminal illness. There might be some simple answers, such as vitamin D supplements for helping improved outcomes.
I am glad you are feeling more confident about the future, as that is a positive attitude.
Hello TEK2009: I just wanted to say that I hope you have good news today and that we shall all be thinking of you. Whatever the outcome, keep a positive attitude and have faith in your medical team to do the very best for you. On this thread you have all our support.
What I do know about recurrence or metastases, from reading, is that there would appear to be some kind of treatment. All the talk lately is about PARP inhibitors. Would anyone with more information to help TEK2009 please post.
Good luck.
Hello Britchick and welcome to our thread. It is very interesting and useful to have someone posting who is in breast oncology. What exactly do you do? Please post any information and advice, as that is what we all need. Like you, I often think about the differences in treatment in different countries, especially when the health services are different. I somtimes look at the Canadian BC threads that are on breastcancer.org, because I lived there for eighteen years. The Canadian and UK ones are similar, but of course Canada has a much smaller population than the UK or the US. I found the Canadian health service excellent, but, of course, I did not have breast cancer at the time.
I am interested in what has been said about recurrences and the differences between hormonal and non-hormonal. Is this three years and lower rate of recurrence for TNBCs and the ten year recurrence possibility for hormonal BC based on actual statistics? Why should the recurrence possibility be like this?
Do these statistics mean that with the hormonal you can be on Tamoxifen and Arimidex, possibly for up to ten years, and then the cancer can come back because you have stopped the drugs and you start producing oestrogen?
As for TNBC, I do not know what to think about recurrence being higher in the first three years than afterwards. What are your views?
I have been thinking about the much quoted five year survival rate for certain cancers and began to think that this was something to do with how long chemotherapy drugs and radiotherapy treatment could keep the cancer at bay, before the effects wear off.
Another thing that I wonder about is the fact that cancers mutate. I shall always remember my oncologist saying that my TNBC may not have started as such, but could have mutated from something else.
Does the three year from diagnosis and lower risk of recurrence also apply to lower risk of metastases?
Are you in the USA for good or will you be coming back to the old country?
Hello christina1961. Thank you for your posting and welcome to our thread. We are always pleased to hear from anyone that has been diagnosed with BC. The more experiences that are told, the more information and advice we get, the better the thread. As I have said before, after the initial diagnosis we all go through a variety of feelings and then have to face a combination of chemotherapy, surgery and radiotherapy, with all the different side effects and reactions.
I see from your posting that you were diagnosed in February, so I was wondering what stage of your treatment you are at and how you are getting on. Good luck. Please post again.
Best wishes to everyone.
Sylvia.
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Hi all
Afraid it was bad news, so almost 2 years to the day I found evidence of cancer back. Turned out I was right to be afraid all three sections were positive for cancer. Lymph nodes in my neck and skin cells on the original infected breast.
Any info on recurrences like this would be really helpful, will look up about PARP inhibitors. My husband found something that suggested the average survival once TN spreads is 7-8 months I really hope that is wrong.
My other worry is the skin side I have a very itchy rash that seems to be spreading really fast, appeared 6-8 weeks ago and have seen it getting worse and as mentioned it is cancer. Anyone else had this?
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Hi all
Afraid it was bad news, so almost 2 years to the day I found evidence of cancer back. Turned out I was right to be afraid all three sections were positive for cancer. Lymph nodes in my neck and skin cells on the original infected breast.
Any info on recurrences like this would be really helpful, will look up about PARP inhibitors. My husband found something that suggested the average survival once TN spreads is 7-8 months I really hope that is wrong.
My other worry is the skin side I have a very itchy rash that seems to be spreading really fast, appeared 6-8 weeks ago and have seen it getting worse and as mentioned it is cancer. Anyone else had this?
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Tek2009 - I am so sorry to hear your news and sending you hugs (((((Tek2009)))))). I have no experience / knowledge to pass on here so I will leave that up to others. But just to let you know that I am thinking of you XX
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Tek2009 - so, so sorry about your news. Noone wants to hear this. Have no advice to offer regarding your skin,, but hope you get some aggressive treatment organised soon. There are many different chemos they can try. It sounds like you did all the right things first go around. There is no point in second guessing about lumpectomy v. mastectomy. You had rads and that puts your lumpectomy on the same level as those who have a mastectomy.
I know you must be scared, but we are here to help and support you in any way we can.
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Hello TEK2009
I was so sorry to hear your news this morning and I am sending you my heartfelt sympathy and best wishes. All of us on this thread are thinking of you and keeping our fingers crossed for a successful outcome for you.
What has your medical team told you about any treatment they have in mind for you? There must be something. Please do not feel defeated before you have started on this second pathway with TNBC.
I have just read on www.1uponcancer.com/breast/ and I have printed out the pages so that I have them in front of me. On page 8 there is a section on PARP inhibitors. It is all about trials that are beginning on PARPs to target TNBC as a further step beyond chemotherapy.
These PARP inhibitors increase the success of chemotherapy treatment and make it less likely for TNBC to become resistant to chemotherapy treatment.
There are several PARP inhibitors that are being examined, one of which is iniparib. Early studies indicate that iniparib is effective against metastatic TNBC. This means cancer that has spread beyond the breast to the bones or other organs.
You must push to obtain anything that is out there and may help you.
You do not say whether you are in the UK or the US. It might be useful to let us know as there may be women local to you who could give you support. I was wondering how old you are, because, as we all know, TNBC affects younger women.
Chemotherapy drugs gemcitabine (Gemzar) and carboplatin (Paraplatin) were used in PARP studies on women with metastatic BC. Half of the women in the study received the PARP inhibitor drug iniparib. 56% of the women who received iniparib had some response. With some the cancer completely disappeared, with some it shrank, and with some it did not grow for at least six months.
Although iniparib was only partially successful, there are already ther PARP inhibitors being developed.
There are more references to PARPs on this page that I have not had time to investigate.
If I were you I would not pay attention to statistics such as the average survival time after this kind of diagnosis. It will put you under too much stress. We are all different and we all react differently to our treatment.
If any of you reading our thread are going through treatment for recurrence or spread, please post with your experiences and any drugs that you may be taking that are proving beneficial. We have here a lady that is in need of our support.
Looking through some of the names that have posted on this thread, I would like to say hello to Josephine and PenelopeP, who are dealing with mets and recurrence. How are you two doing and can you help TEK2009? Thank you.
All my very best wishes and a big hug of support.
Sylvia
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Sylvia
Thanks again will ask about these things, meanwhile have you come across any oncologists that specialise in TN, I found one in London but wondered if there are others.
Thanks
T
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Hello Tek2009,
I just wanted to say that I have been looking for oncologists specialising in TNBC, but so far I have not found any. I shall l keep looking. I would think that your best bet is in London, where I think they will probably be at the forefront of new treatments.
In London you would have the Royal Marsden Hospital which is supposed to be one of the best. Barts Hospital is also excellent. I have a friend who works in cardiology at Barts and she has told me they have a very good cancer department. An acquaintance of mine was treated for TNBC at St Georges in London and spoke very highly of her oncologist. That acquaintance is now 44 and, like me, she will be approaching 6 years since diagnosis. There is an eminent oncologist, Professor Karol Sikora, who works in London and whom I contacted a few times in the past by e-mail about my own TNBC and a possible connection with my over active parathyroid gland (now cured) and I found him very approachable and friendly.
While searching for information about TNBC I found that another drug, a monoclonal antibody, is also being used for treatment of metastatic TNBC. It is called cetuximab.
What you need to do is get immediate treatment.
Once again, wishing you all the best.
Sylvia
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TEK2009,
I am so sorry to hear about this recurrence. I wanted to let you know that I met a woman yesterday in chemo who had a triple negative recurrence exactly two years after her diagnosis - she had a mastectomy but it came back with two tumors and lymph node involvement in her neck. She has had two treatments of gemcitabine and carboplatin - and they just added a parp inhibitor yesterday. I think iniparib. Her cancer has totally gone into remission. She said she believes her present course of treatment (which is being given at least twice weekly) will culminate in a once a month maintenance. She hasn't feel bad at all - she said it was so much easier than the adriamycin she had during her original treatment. She looked good, she drove herself to treatment yesterday. I am wishing you all the best and please keep us all posted. Hugs, Christina
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Sylvia,
I am undergoing neoadjuvant chemotherapy with taxotere, adriamycin, and cytoxan. I have completed my fifth infusion with the last one scheduled for mid June. The oncologist believes there is no more active tumor in my breast but the one enlarged lymph node which is approximately half the size of a bb - or .5 mm - still feels hard like cancer. He hoped it would have been gone by this last treatment but he estimates 90% of my cancer is gone at this point. I so hope the last of this does the trick as he said it would raise my recurrence free survival from approximately 82% to somewhere in the 90% if I have a complete pathological response.
Even though I've been told I may be able to skip radiation if less than 4 positive nodes are found following surgery, I am going to get radiation as an insurance policy. I haven't completely decided for mastectomy or lumpectomy. Thank you for the warm welcome.
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Christina thanks for this. Really helpful did she lose her hair on this treatment or feel nausea?
Everyone seems to have had different treatment for mets tnbc. most frustrating.
Thanks again
T
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Sylvia
Thanks for that
Dr Andrew Tuttat london bridge has researched tnbc. Spoke to him once but he cant see me for a couple of weeks so message via sec was to do what Royal marsden advise, but thats my problem not sure its worth it. sorry to be blunt but thats how i feel. Quality over quantity, but will see on Friday.
Everyone seems to think i should do as advised.
Anyway we'll see.
Thanks
T
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Hello Christina, TEK2009 and everybody else.
Christina, you have mentioned exactly the same drugs to TEK2009 as I have mentioned, so I suppose that these must be the drugs of choice being used for the treatment of metastatic TNBC. It looks as though this treatment was very successful for the woman you mentioned you had met during your chemo session. I think they must be in use here. I hope they are. We women in the UK must keep pushing for the same treatment as in the US.It is good to know that the woman in question has not been suffering from this treatment as much as she did for the treatment of her primary TNBC. I know that lots of women suffer a lot of side effects with the docetaxel (Taxotere), epirubicin and cyclophosphomide.
It is comforting to know that the woman looked good and was able to drive herself to treatment.
I hope that this will be an encouragement to TEK2009 and give her a positive attitude.
Christina, I am sure you must be looking forward to mid-June and the end of your chemotherapy treatment. You have had the same neo-adjuvant chemotherapy as I had. I think Adriamycin is the brand name for epirubicin and Cytoxan is the brand name for cyclophosphomide. As already stated Taxotere is the brand name for docetaxel. I know that some women have paclitaxel (Taxol) instead of docetaxel, but I do not know how an oncologist makes the choice. Both belong to the family of drugs known as taxanes.
How have you been feeling while going through chemotherapy? I hope you have not had too many side effects.
Let us hope that the hard lymph node will disappear with the last treatment. You then have to decide about a lumpectomy or a mastectomy. Will you make your own decision or do what your medical team advises? I had no choice, because the tumour was large, but I would have opted for a mastectomy anyway. It may just be psychological but I feel better that I had the breast removed and feel more confident that, in so doing, it cleared up any stray cells in the breast. Please let us know how you get on. It is just my own opinion, but I feel it is probably more prudent to have radiotherapy to finish the treatment. I found radiotherapy very easy to deal with, but I do realise the risks of radiation. What a lot of choices we have to make.
Thank you, Christina, for your very valuable contribution to this thread. Keep well and keep posting.
Hello TEK2009
Thank you for letting us all know about Dr Andrew Tuttat. Were you able to learn from him any additional information to that which most of us with TNBC should know? I think we all know about being negative in oestrogen and progesterone and negative in HER2. We also know that TNBC is aggressive (but I still have not been able to ascertain whether TNBC is more aggressive than being HER2+). We know that it can spread quickly and that the prognosis is not considered good, because there is nothing like Tamoxifen to take after the orthodox treatment. We now know there are drugs available or in trials to help with targeted treatment for this cancer and a lot of hope is being put into PARP inhibitors. We are told that TNBC affects younger women more than older ones. I would like to know why that is. If you have any more additional information please let us know.
If I were you I would do what the Royal Marsden advises, especially if that is the hospital that has been treating you. I think it is very important not to delay treatment and to be positive about that treatment. I delayed a great deal before starting my treatment and I think I am lucky to be alive. My medical team did not tell me my breast cancer was aggressive. It could be that in 2005 they knew very little about TNBC.
I hope you will come back from the Royal Marsden on Friday feeling reassured. Whatever you are told there, it does not stop you getting a second opinion from Dr Andrew Tuttat.
I wish you all the best and I shall be thinking of you on Friday.
Sylvia
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Hi TEK2009
Josephine here, (TNBC June 2009, dd ACT and 36 rads, 2cm IDC 0/11 nodes) mets, Autumn? 2010, brain, ribs and thoracic region.
TEK, you have received lots of advice , hope it is not too confusing. Remember we are not oncologists, and they are the people you should be listening to. Andrew Tut is great (a medic, but primarily research based) , as is his oncologist colleague Prof Paul Ellis (who does NHS as well as private I believe). A BC oncologist should be able to treat TNBC, but I heard from an expert on ER+ BC that (as we all know) TNBC is a different diesase altogether. The degree to which TNBC overlaps with basal type cancer is still debated, but importantly (as far as I can ascertain) treatment is no different. TNBC is different from regular ER+ BC in the rate that it proliferates and mutates. Neoadjuvant treatment is often given in TNBC (not just because of tumour size) but to ascertain that the said tumour responds to the chemo. TNBC mutate very rapidly and frequently become resistant to adriamycin and other chemo like taxol. I am not clear what your treatment plan is? but I got different opinions, because I wanted the option (down stream) of getting on a PARP trial, which are most frequently are given with platinum based chemo. If you had previously one of these chemos it might exclude you from a trial. The PARP inhibitor trials are on going, are by no means clear, and the push to have approval by the FDA this year may not be forthcoming. Frequently (but not always) with TNBC, it comes back, and then one must have a card up their sleeve (what treatment now). So my advice is not rush, discuss the current treatment plan, and then what next? if (and hopefully and not for a long time) you have a plan if disease comes back.
My disease is regressing (remission is a big word) I have no evidence of clinical disease, and no new mets. I have just finished six cycles of docetaxol, avastin (because of lung mets) and zometa. Plus neulasta, blood transfusions and now EPO. First time with dd AC/T I worked through out. This time, the chemo is killing me (fatigue) but if my disease regresses it is worth it. I have a scan in 10days time, which should hopefully enable a chemo break. I stay on avastin and zometa (I can explain if interested).
It is very scary for the disease to come back, and you were unusual for a TNBC to have 23/23 nodes positive (normally they are divinding so rapidly they just slip past). The survival data is scary (and even if you look at the PARPi triasl with an increase of a couple of months). However, these are median (not mean) values (look at the range) better still do not look at all. I had my treatment delayed by 4 weeks because of a serious infection, but I survivied, my lungs did not collapase, and I have been working again since February. Hope these comments of use
J
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Josephine - if you go on any TN thread on this site you will see many, many of us who are node positive.
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Sorry gillyone
must have missed your point? my contribution (invited by Sylvia) was to add my penniworth as someone with TNBC stage IV for TEK2009. It is really difficult to deal with stage IV mets so soon after diagnosis (even if you are prepared). My info on nodes was derived fronm peer reviewed papers and also the TNBC conference I attended at the Royal Society in March (had to cab there as the tube was too tiring!!)
best wished
J
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Hello Josephine
Thank you for your posting to help TEK2009.
As usual, it was all very informative and helpful and I am sure that TEK2009 will be very grateful for your help.
I was so glad to hear that you are doing so well. I am sure that you must be very tired. Keep up the good work and post when you feel up to it to let us know how you are doing. It is good for all of us to know that there is treatment out there if we get recurrence or metastases.
I was wondering if we have anyone on our thread that has survived very long term, having been diagnosed with TNBC, longer than 10 years. I did not know that you could be node negative, because the cancer had gone past the nodes. I was feeling relieved that just one sentinel node had been affected in my case and I thought that was because the cancer had not spread any further. Now I feel somewhat frightened. It makes me wonder why in the UK we just have regular physical exams and no blood tests or scans after initial treatment.
I am busy reading a most interesting book published in 2011, The Emperor of all Maladies - A Biography of Cancer by Siddhartha Mukherjee. It is very well written and it traces the history of cancer from 5000 years ago to the present date. The author is a doctor, oncologist, researcher and award-winning science writer. One thing I learned from this is that relatively small breast cancer tumours, barely detectable by mammography, can carry genetic programmes that make them more likely to metastasise early. Conversely, large tumours may inherently be genetically benign, unlikely to invade and metastasise. Size matters, but only to a point. The difference in the behaviour of tumours is not just a consequence of quantitative growth but of qualitative growth.
That is all for today.
Sylvia
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Hi Sylvia
Thanks for your best wishes. Interesting book that you are reading. What I learmed at the TNBC meeting is that with TNBC as opposed to regular BC, size is not a major factor (because they are dividing so rapidly anyway), and also that unlike regular BC, to have node negative is not the same as having node negative in ER+ disease (because as indicated in my previous post, those little mets are so busy metatasizing, they do not hang out). So a possibly better way to look at this, is that node negative status in TNBC (as was my orginal diagnosis) is not as potentially optimistic as with ER+ disease. On a separate note, I got a letetr from breast screening for a mammaogram (due every three years) but I had my first one in Oct 2009 which was negative!! yet my tumour came from no where in 6 months. At least that is one thing I do not have to do at the moment!! Be vigilent out there. TNBC is like no other, and my fear with my current status is that stopping chemo will just enable things to crank up again. However, I am being positive
J
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Hello Josephine,
Thank you for your post.I learn so much from you and I am sure that it is the same for all of us. What you say about the difference with the negative node status between TNBC and hormonal BC is very interesting.
It must have been quite a shock to have had a clear mammogram and then to have been diagnosed with BC. It is not the first time I have heard of this happening with mammograms. It is also a familiar story with TNBC to hear a person say that it appeared to come from nowhere. It was certainly the case for me. Do you have any ideas about what causes TNBC and why it affects mainly younger women? Do you think there will ever be a targeted therapy for TNBC that will be considered a cure?
Thank you for your advice for all of us to be vigilant. We have to be so aware of any changes in our bodies.
I can understand your fear about the consequences of stopping chemo. We all know the toll that chemotherapy can take on us. All you can do is be positive and that is what you are doing. I often wonder how long chemotherapy and radiotherapy act in your body to keep tumours at bay. There is so much emphasis on the five year survival rate with primary cancer that it makes me think that their effectiveness starts to wane at that point, and that the immune system has to then fight with all its might.
Wishing you all the best from all of us. Take good care of yourself.
Sylvia.
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Hello Gill
Thank you for your post. The success of this thread depends on as many postings and as much information as we can get. It looks as though with TNBC size of tumour and node status is not necessarily connected to outcome. We are all different and although we have all been diagnosed as TNBCs we shall all act individually and have different results. We should all try to be vocal to make sure that we all get the best possible treatment from the medical establishment.
Here in the UK we are heading into yet another Bank Holiday (late spring bank holiday) and here in the south west some well needed rain has just begun. I do not know whether there will be some more celebrations soon for the 90th birthday of the Queen's husband, Phillip, on June 10th and it is the Queen's official birthday on June 11th.
Have a good weekend.
Sylvia
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Hi Sylvia
You ask
'Do you have any ideas about what causes TNBC and why it affects mainly younger women? Do you think there will ever be a targeted therapy for TNBC that will be considered a cure?
well that is the million dollar question...................
as you know there are those TNBC that are BRCA+ and BRACA -. The genetics are clearer for BRCA+ but why TNBC in younger women? I suspect it is because the disease is more aggressive that younger woman appear to get it (or it is manifest). In addition ER+ BC is hormone dependent, and by definition will be manifest when hormonal changes happen (at menopause) but potentially at other times, Many diseases like cancer are susceptible to epigenetic triggers (environmental changes, diet, lifestyle, internal, external etc..) that trigger changes in the DNA that can cause cells to behave differently. The Cancer research field is ahead in this area, but it is complex; and whatever those changes that are triggered, they too are controlled by our DNA. In other words, our genetic inheritance can predispose us to cancer, this predisposition can then be exacerbatted by the environmental triggers we are exposed to, but how and how much we respond is ultimately controlled by our own DNA /genes (chicken; egg; chicken) if you follow. So, those triggers that could cause cancer in individual A would not necessarily cause cancer in individual B, and there are many genes. We are starting to understand more about these issues, but it will not simply be an edit to exclude x or y from your diet (although clearly fat intake and alcohol play a part)..........no simple answer
Will there be targetted therapy; for sure. I would urge TNBC patients to get their androgen receptor status checked (as well as EGFR). A very small amount of woman with TNBC are AR+ (in common with prostate cancer) and there is antibody-directed therapy approved against this target. Ditto the EGFR. My TNBC was negative for both!! They will find a target, but I am not sure research is currently doing it in a direct way (very complicated) as opposed to; we have this FDA approved mab (monoclonal antibody) is its antigen expresswed on TNBC? The problem with TNBC is its rapid division and mutation rate. What might be expressed on the original primary may not be on mets. One would need to do differential surface proteomic screening to ascertain this, and this is demanding at the techology level..
Perhaps more can be understood on TNBC by comparison with other (non breast) basal cell carcinoma's and I suspect this where the research and future therapeutic options will develop. In otherwords, the future of targetted therapy in TNBC is not with BC? (is this heresy?)
best wishes
J
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Dear Josephine, Sylvia, Gill, karen and Christina and anyone else that has posted here, I am going to try to cover as many of your comments as possible in this reply as am really exhausted right now but this is important, so forgive me for not doing individual replies.
First I ended up seeing onc today, cannot see Tutt for a few weeks anyway. Meantime prognosis is probably 6 months maybe a year. We discussed chemo but my onc did not seem to think it was worth it and had same view I had concluded ie did not work first time and to try now when it looks like I may not have long and ruin quality of life, we agreed to try something less aggressive, ie Capecitabine (Xeloda) it is supposed to have minimal side effects.
Before I go down this route I need to see if anyone else has had it and any effects and I know we all react differently but am keen to hear.
We also discussed the other chemo regimes mentioned in thread above ie carboplatins with parps, interestingly there is a conference soon in Chicago I think and it is likely findings will show on average results not as amazing as I think have been inferred. He certainly was optimistic but agreed not to try this until I get to the point that quality of life is rubbish anyway. This way I should get some good months and who knows there is a slim chance the capecitabine might help. In all honesty mine is growing at such a rate that this affects my situation.
I had a CT scan end November that was clear, I also had a mammogram a week ago that showed nothing bad, and to top it all I had a check up in Feb, this just shows you how fast it has come on. I did my research first time round and realised it could be this aggressive and that most likely recurrence was mets so only way to check was via scans, my onc was not sure but agreed,. In hindsight he was probably right as the scan showed nothing in Nov and less than 4 months later I am in this position.
Also my recurrence other than lymph nodes in neck is a rash to the breast, anyone ever heard of this or seen it. I have watched it spread over the last 6 weeks, initially thought it was nothing and was away for a month in April so could not do anyhting anyway.
Hopefully have responded with some helpful info to others. But as we all know it is so unusual, we are all so different it makes second guessing impossible.
All the best
T
Diagnosis: 5/11/2009, IDC, 3cm, Stage IIIb, Grade 3, 23/23 nodes, ER-/PR-, HER2-0 -
TEK,
I do wish you the best of sucess with your treatment, and to apologise (having re read these threads) that you most likely have TN IBC. My excuse (no excuse) was that my brain was scrambled (post chemo) and the fog is now clearing, and I had not read the previous contributions to this thread carefully enough. There are many links to treatment and SEs with Xeloda on this site and others which I am sure you will find helpful. At this stage I imagine you just wish to get on with it. Please keep positive, your response and prognosis are by no means set in stone. I was pretty surpised that your onc gave you a prognosis in terms of months? but as I said I had not appreciated that you have IBC. Best of luck and please keep in touch
J
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Hello Josephine
Thank you once again for a very informative post and for expressing your views.
What I am learning from your post and others is that there would appear to be a lot more testing and a lot more information given out than when I was diagnosed in 2005, when great surprise was expressed at all my written questions. I got respect for this but was told that most women did not want to know too much. I now know there were so many more questions that I could have asked.
You mention getting tested for androgen receptor status for all TNBC as well as EGFR. Can you get such checks on the NHS or are they restricted to private patients?
It is interesting to know that you think that the future of targeted therapy in TNBC will be not in BC but with other basal cell carcinomas.
Look after your self and have a relaxing bank holiday weekend.
Sylvia.
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Hello TEK2009
I was so sorry to hear about the prognosis and, like Josephine, very surprised that your oncologist stated what the time frame would be. I do not think it is helpful to state things in what appears to be such a brutal manner. There are many drugs available now to help patients that you can never be sure of the outcome. There are cases where people are told that they cannot survive and then go on for years. You must be quite exhausted with all of this and if I were you I would try to switch off, clear my head, get a lot of rest and then decide what you think is best for you. On this thread we shall all be thinking of you and sending you our best wishes.I do hope that capecitabine (Xeloda) will help you. If anyone on this thread is taking Xeloda, it would be useful to let us know how you are getting on with it and what side effects you are personally experiencing and how you are dealing with them. We all know that we react differently to treatment but it is still useful to have personal information and tips.
It would also be useful to hear from anyone out there that may be taking carboplatin or PARP inhibitors. From reading another thread, I get the impression that carboplatin is being added to some chemotherapy treatments, such as the taxanes.
I have been told that a rash on the site of an original tumour is a sign of recurrence. I know that I have a tendency to keep a check on my right side where my breast was removed for any sign of a rash.
All the very best, TEK2009. My heart goes out to you.
Sylvia
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Hello Britchick
Thank you for your post. I was interested to know that you have lived in the US for more than 25 years. I think you would probably find it difficult adjusting to living back here. My husband and I found it very difficult after seventeen years in Canada. We have been back here seventeen years now and are still adapting!! Providing you have work I think life is easier in North America. Sadly, I feel that the UK is a country in decline. We used to come back almost yearly from Canada, but it is not the same as living here. We probably went to Canada too late in life.Thank you for your references to information about TNBC. I am sure that we shall all find it useful.
There seems to be more and more information about the longer you survive with TNBC the better the prognosis. However, someone on the other thread had had a recurrence after eight years. We need to hear from very long term survivors of TNBC or hormonal BC or triple positives. Those kind of postings help to boost our morale and keep us going.
That is all for now.
Wishing you all the best.
Sylvia.
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Sylvia
To be fair I found it extremely helpful and it was I who pushed the onc to be honest he knows I am pragmatic so it was only what I had already guessed. Also the chemo really had not worked and TN does well if chemo does work and not if it doesn't respond, I cannot do taxols due to previous reactions and I told onc I want quality over quantity and am really glad he was finally straight with me. Now hopefully my husband and I can make the most of whatever time we have whether 6 months or longer.
Thanks again for the support.
T
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Hi all and happy Sunday!
I have just been catching up on all your posts. From my research I agree with Josephine about node staus etc. I have read several peer reviewed articles which seem to point to the following:
For TN and HER2 + cancer the main factor concerning long term prognosis seems to be response to chemotherapy and for HER2 Herceptin. What is becomming clear is that not all TN cancers are the same. Some respond very well to chemo (complete pathological response) and these type of cancers have the best prognosis. BUT where there is incomplete pathological response (some of the tumour left after treatment) the prognosis is not as good. In fact I read one article which said that the long term prognosis for TN cancers which did not respond to chemo was 'dire'. I had neoadjuvant chemo so I know that my cancer did not respond to chemo. But most parients do not know how they responded to treatment as the tumour was removed before chemo. The response to chemotherapy seems to be a good guide to long term prognosis regardless of tumour size and node status. My nodes were negative but apparently this is not necessarily good since I did not respond to treatment
.The BASAL type TN cancers also have a worse prognosis. I found an article which said Basal type breast cancer accounted for only 8% of breast cancers and the majority of these are TN BUT not all TN are Basal. Even then, within the Basal cancers there are some which are less aggressive. At the moment (according to my breast surgeon) they do not know which is which. To complicate matters even further, many of the Basal TN cancers also have some kind of BRCA 1 mutation (I have a mutation of 'unknown significance').
I have been told that the first three years after treatment has finished is crucial for TN cancers - especially those which do not respond to treatment. After three years the chance of recurrence drops significantly and after five years that chance of recurrence is minimal. But, there is a lady on the TN board with recurrence after six years! In my discussions with my BS and Onc it would seem that there are a lot of 'unknowns' and that they still need to do a lot of work with TN cancers.
I am not sure if any of these 'pearls of wisdom' help anyone. I could drive myself mad with this - especially since I did not respond to chemo at all and the treatment was withdrawn. My BS said that they did not know what was going to happen and we will have to 'wait and see'. I am NED at the moment and all being well I will stay that way! You just have to live for the day.
Karen X
TEK2009 and Josephine - thank you so much for sharing with us and sending you love and best wishes.
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