Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Hanieh,
Thank you for your latest post. I was sorry to read that you were not asleep late at night when the rest of your family were sleeping. You do need to get plenty of rest.
As soon as I read your previous post I started looking up decapeptyl. I discovered that Diphereline was also called triptorelin and Decapeptyl SR and Gonapeptyl Depot. It looks as though triptorelin is the generic name and the others are brand names. Again, the article said that it was used in the treatment of prostate cancer for lowering the level of testosterone. Interestingly, it also said it was being researched for the use in breast cancer to lower the level of oestrogen. The link to this article is as follows:
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/triptorelin
Please have a read of this because I found the list of side effects very long and not at all reassuring. One side effect that I noticed listed was anxiety and depression, so I am wondering whether that first injection has already had some effect on you.
The other thing that I cannot understand is why you would be having it when your tumour receptors were all negative and that, as we are told, it was not hormonal driven. Were you given the exact numbers for your tumour receptors? For example, I was told that my oestrogen level was negative (ER-), that my progesterone level was 5% but that this was considered negligible and therefore I was progesterone negative (PR-) and that my HER2 was negative and therefore I was HER2-. Were you told any of this?
You need to ask why your oncologist is giving you a drug to lower your oestrogen level when your breast cancer appears not to be hormonal driven, otherwise you would not be considered triple negative.
Does the use of this drug have anything to do with your being in the subtype medullary.
I think you need a more thorough explanation of why this drug is being used before coming to any kind of conclusion.
I was interested to know you have been to Turkey.
I shall have a look to see if I can find any more information for you about this drug.
Take care and try not to worry.
Fond thoughts.
Sylvia xxxx
0 -
Hello Hanieh,
I have just found another article about the use of the drug Triptorelin – Decapeptyl SR in the treatment of hormonal breast cancer. This was a trial.
As for as I can tell it was all about younger women whose chemotherapy treatment had not brought about a cessation of periods, that is premature menopause. I am sure you are aware that a lot of young women's periods stop when going through chemotherapy treatment, but they can often return after treatment. This trial seems to be all about using Decapeptyl to suppress the ovaries from producing oestrogen to avoid a recurrence of breast cancer. Once again, this all seems to be about hormonal breast cancer and comparing using tamoxifen alone compared to an aromatase inhibitor and Decapeptyl.
I am not a doctor, but this is how I read this trial. It would seem that you need to know why you are having this drug when you are triple negative. I can only say that if it were me I think this is the question I would be asking. I think I would also be asking whether it is being used to prevent a recurrence of breast cancer or a new primary.
Let us know how you get on. I hope with these new names that we have for the drug that someone reading the thread might be having this treatment.
If Tom is reading I hope he may be able to come to our rescue.
Thinking of you.
Sylvia xxxx
0 -
Hello Hanieh,
I have been having a look at a British Medical Association (BMA) book entitled "New Guide to Medicines and Drugs – the complete home reference to over 2,500 medicines". I have it here at home and I looked in the drug finder part for De-capetyl SR and it says it is the brand name for triptorelin which is an ant-cancer drug.
I then looked up triptorelin and it is listed as an anti-cancer drug and also a drug for menstrual disorders and as you said it is used for endometriosis.
Best wishes.
Sylvia xxxx
0 -
Hi Sylvia
I wonder if everything is alright with you. We miss you when you are not here.
Wish you the best
Hanieh
0 -
Hi Sylvia
Thanks a lot for such a kindness to devote so much time to study about my case. It appears that such a drug that is widely use here in Iran may be just in the state of trial in some places. Tomorrow I will have my appointment with my surgeon and my next appointment with my oncologist will be in two weeks after my blood test . I have two rough weeks to decide .
On one of the threads I learnt about a lady whose TN came back with Pr positive . I wonder if for some cases TNBC was not hormone negative on the onset. I post my tumour pathology report after my operation here. This is all I know about it.
Love
Hanieh
0 -
0 -
0 -
Hello Hanieh
Thank you for your posts. I shall have a look at them and post in more detail later on.
I have posted in the past about how my oncologist told me that tumours do mutate and that just because I ended up with three negative receptors it did not mean that they started out as such. As a non-medical person this is hard for me to understand, but in a way it makes sense. I have every confidence in that oncologist, a really dedicated woman, who kept me with her for ten years until she thought it was alright for me to be discharged.
I have also read that women with hormonal breast cancer and who are on tamoxifen for five years or more can end up with triple negative. It might be something to do with tamoxifen treatment being too extreme.
I have also read in the past that there was this idea of manipulating triple negative to turn it into hormonal positive and then treat with drugs such as tamoxifen.
All for now as I have a lot to do today.
Fond thoughts.
Sylvia xxxx
0 -
Hello Hanieh,
I have just had a look at the pathology report and it does not tell us much more than we have already learned from you.
I was interested in reading that the KI was 20%. I am not sure what the implication for that is, but I do know the American women seem to mention this a lot. My oncologist never mentioned anything like that to me.
Your pathology report is clear and it seems to me to give reason to be optimistic.
I do hope all will go well with your appointment with your surgeon. Let us know how you get on. I do hope you will be able to make a decision about what to do with regard to these injections. You need to know in plain and simple language why they have been suggested and what the benefit to you is and what the consequence is if you reject them.
On this thread I think we all believe in taking one day at a time and dealing with one problem at a time. See your breast cancer surgeon and deal with that first of all.
That is all for now.
Thinking of you.
Sylvia xxxx
0 -
Hi Sylvia
Unfortunately my surgeon is busy with board exams at university and his secretary didn't know when he would be back to clinic. So I should wait for some more weeks. What a bad luck!
Yet regarding the probable process of mutations I wonder that may be the reason why I am having hormonal treatment.
I will continue to study as much as I can to find the logic behind this prescription.
Lots of love
Hanieh
0 -
Hi Sylvia
I have been awol, well not really, I have been checking in but haven't had anything useful to add.,
My step daughter and eldest step son were here this weekend. As you know he is chair of housing and chief labour whip for Lambeth council. He is a Liz Kendall supporter so I avoided mentioning JC but we went out for a pint last night and someone brought the subject up. Matthew seems to think Labour is finished and is thinking of leaving politics. I felt quite sorry for him. I got the impression that he thought the Lib Dems offered a refuge for disaffected labour supporters but after a day drinking Cava and wine, I could of got the wrong end of the stick.
Michael
0 -
Hello Michael,
I am always pleased to hear from you. Your post did at least make me laugh'
I am so happy to know that you get on so well with your step- children. They will keep you young at heart.
It is sad to know that Matthew feels that Labour is finished. I sincerely hope not as it is the only party that can bring any hope for ordinary people. It just needs to get back to its routes. Tony Blair and Gordon Brown usurped the Labour Party and Blair won elections by being Tory-lite and Brown took over the Party without putting himself up for election as leader and then losing. I would be most interested to know why he is supporting LIz Kendall. I think she is a horrible woman and a complete amateur. She thinks being head girl at school makes a leader.
I have to stop now.
I shall post more later. Best wishes,
Sylvia,
0 -
Hello again Michael,
I was sorry to read that Matthew is thinking of quitting politics and I would be interested in knowing what has upset him to bring this on. What does he think about the other candidates for the leadership of the party? I think that without Jeremy Corbyn everyone would have died of boredom. The other three have nothing to say and do not impress. I do not know if he is going to win, but he has certainly brought out a lively discussion and attracted huge crowds, especially young people. He has his beliefs, they do not alter and he gives straight answers. To me he is trying to revive the true spirit of 1945 and to save the Welfare State and the National Health Service. We would not have them if it had not been for the Labour Party victory of 1945. No Labour leader since then has been any good, although they did bits and pieces. I think Blair and his bunch have been really spiteful and horrible and Blair should be called to account for Iraq.
I am surprised that Matthew thinks that joining the Lib-Dems is the answer. To me they seem completely finished.
I am so fatigued by all of this and I just want Saturday to come and to know the results. I think if Corbyn does not win there is going to be a lot of trouble and questions about the vote counting. I also think there will be defections from the Labour Party.
My brother has been working non-stop and has been an activist for 41 years. He is going to be so upset if Corbyn loses.
What does your step-daughter think about all this and your younger step-son?
I read an interesting but worrying article on page 22 of the Independent on Sunday on September 6th. It was under News, and entitled "NHS cannot meet demand for cancer diagnosis" and under this it said "Chancellor must fund service for a growing and ageing nation, says charity". The article is by Charlie Cooper.
The article starts "Cancer diagnosis services in the NHS are under-staffed and under-funded and will need a new injection of spending if they are to cope with mounting demand, the country's leading cancer charity has said.
If you can find the article online please read it and tell me what you think. Among the details it says there are about 280,000 new cancer diagnoses in England in 2013 and that figure is expected to continue rising, with demand outstripping capacity.
The target of 85% of cancer patients receiving specialist treatment within 62 days of being referred for tests by their GP has not been met for a year and a half.
Apparently England and the wider UK have a shortage of professional staff, such as radiographers, radiologists and sonographers. We are way behind Germany, Spain and France.
The UK has only nine CT and seven MRI scanners per million people, which is a lot less than Spain, France and Germany.
A lot of the UK's imaging equipment is out of date and will cost £250 million to replace, according to Cancer Research UK.
France has 130 radiologists per million people and the UK has only 48. Services are already operating seven days a week in order to cope.
All this is dire news and makes me feel really worried. Are we going to see the privatisation of our National Health Service, the introduction of which in 1948 was our proudest moment. Are we going backwards to health treatment based on the ability to pay?
Earlier in the week I heard on the radio about all the cancer drugs that are being taken out of the Special Cancer Drug Fund. This is disgraceful.
Bearing all this in mind I urge all newly diagnosed patients to fight for their rights to proper health treatment and not to accept any cutting out of treatment or drugs based on cost. It looks as though we may have to go back to fighting for every aspect of our treatment like the women did some years ago to get the drug Herceptin.
On the same page as the article in the Independent, there is another one entitled "Scrapping free lunches 'puts pupils' health at risk'". This is another aspect of what the present government is doing to our children. It is setting them up for poor health in the future. We have gone from Thatcher the milk snatcher to rich Tory boy stealing the food from the mouths of innocent children.
Did you see Panorama last night about Corbyn?
That is about all for now.
Best wishes.
Sylvia
0 -
Hi all
Just flicking through i noticed some mention of Diphereline. This is used in treatment of prostate cancer.
Han Tagh - I'm surprised with your pathology report you are being offered this? Also your report says medullary - did the path report say anything about the pattern of the cells and the lymphocyte infiltrate? I think also the comment made to you about recurrence is complete rubbish. If your tumor is a true medullary being that small with no lymph nodes its very very unlikely to come back, (thats not to say it won't) but the risk is quite small. Have you been screened for BRCA1/2 mutations yet?
Love to all
Tom
0 -
Hi Tom
The only other pathology report I have is the record of my biopsy before surgery. I don't know if there is the mention of what you said in there. But I will post its picture . In fact I don't understand much about it.
Here in Iran Brca test is unfortunately not recommended for people who have no history of breast cancer in their families and so for my case it costs a fortune if I want to have it done.
Wish you the best
Hanieh
0 -
Hello Tom
Thank you for coming in to help support Hanieh. I did post earlier about Diphereline and researching it I also discovered they are researching it for use in breast cancer but for hormonal. I do not really understand why.
Hanieh is triple negative, but as I explained to her my oncologist told me that cancer cells mutate and that my triple negative could have started off as hormonal. I researched medullary breast cancer and as you will know it is quite rare and affects only about 3.5% of breast cancers. It also said that medullary was easy to treat.
Of course we are dealing with a different country here and I was surprised to learn from Hanieh that the taxanes, paclitaxel and docetaxel, are not being used for the treatment of breast cancer. My oncologist, ten years ago, told me they were very effective in the treatment of triple negative.
I am now surprised to learn that in her country she cannot get tested for the faulty genes BRCA1/2 because there is no family history. She is just a young woman so I would have thought that gene testing was merited as well as testing for p53.
I suppose all the different countries have different rules. I wanted to be tested for BRCA1/2 but I was not young enough to qualify and they said my maternal grandmother having died of breast cancer at age 70 was not relevant.
I hope all is well with you.
Best wishes.
Sylvia
0 -
Hello everyone
Although summer is fast disappearing there is still plenty of colour in the grounds of our apartment complex. This is one corner of it showing hebes, fuchsia, hydrangea and a dwarf photinia (commonly known as red robin).
The other parts of the grounds also show hydrangeas and a large hebe.
What do you think of them?
I hope our normal group will soon be back posting and that you will encourage any other newly-diagnosed people to come and join us.
On Saturday this thread will have been going five years and a lot of work has been put into it by everyone over those five years.
Best wishes.
Sylvia
0 -
Hanieh - please do post your report. Medullary BC is quite rare. The tumors are often grade 3 and TN, however the immune system has serious got involved and kept the tumor in check. Under the microscope, the cells appear "squashed" (for want of a better term) and the tumor is surrounded by lots of immune cells and infiltrated by them too. Also the tumor has a fleshy cream/white appearance and is often very isolated. Atypical medullary is similar but doesn't have all the features or to the same extent as true-medullary. Both look aggressive, but respond very well to chemo. Incidentally, lots of TNBC fall into the atypical medullary type.
Sylvia - i'm doing ok thanks.My wife is well, although she has had some tummy issues the past week, but its seems to be more good old fashioned constipation! I was getting worried about her liver, but I think she need a good glass of prune juice!! BRCA testing isn't expensive per se but some countries do not do it as standard.
Lovely flowers by the way - this is my favorite time of year!
On a research note - I was in a very interesting meeting yesterday, a group we work with think they know why some patients are resistant to Herceptin and the data is very compelling. Obviously not applicable to TNBC, but I will keep everyone posted.
Love and prayers
Tom
0 -
Diphereline works by ultimately by reducing the production of luteinising hormone. In prostate cancer it is used to ultimately block testosterone production. In women it would in theory block oestrogen production. However since the tumor is TN i can't see a use for it. The other possible rational may be to preserve ovarian function - I'm not 100% sure how this works, but I believe there was a trial (in Iran actually where Diphereline helped to improve ovarian function in ER/PR negative cancers.
0 -
Hi Sylvia
Your flowers are lovely. Thanks for sharing the pleasure of watching the beauty of them by posting their pictures.
Regarding taxanes, they are widely used in Iran by the brand names of taxol and taxotere. I said my oncologist didn't prescribe them for me -the fact that sometimes really worries me.
About the Brca test, unfortunately it's not covered by insurance and if I want to have it done it will cost a small fortune. However, when it comes to health, my husband is ready to afford all the costs. The reason I prefer not to have it done is that prophylactic removal of breasts and ovaries are not accepted things in my country and even among my doctors who, though both studied in the US, believe that we should not deprive a woman without a family history of bc of her feminity. Professor Akbari, my surgeon, who has spent most of his life studying about bc both in Iran and US said there was no need to take any other action than living my normal life . I think I have no other choice than to keep my faith in him. These days I'm waiting to see him as soon as he is back. I hope that everything he believes about my case is right.
Lots of love
Hanieh
0 -
Hi Tom
Thank you so much for spending time studying about Dipherline. I will post my pathology report of biopsy as soon as the net speeds up. As English is not our mother language and because of lack of enough references in Farsi ,doctors have not got used to the habit of discussing the details of the diseases and available treatment to their patients and all I learnt about bc was my own studies. Yet I never give up and until I get a convincing answer I will continue to ask more .
The point that you mentioned about Dipherline for preserving ovaries was also once mentioned by my surgeon 's assistant. Yet, upon my asking , my oncologist just said the production of FSH hormone can cause reoccurance and by dipherline injections he is blocking it. It's a shame he is so reluctant to elaborate more on such a life and death issue.
Best wishes for you and your family
Hanieh
0 -
0 -
Tom would you please tell me what you understood from this report?
0 -
Hi Sylvia again
I was interested about what you said about your health system .Despite all the hardships, here we have both public and private systems. The public system is free with some high grade doctors , yet most of the times you have to wait some time for everything, and the hospitals and other centers may not be satisfactory enough . The people who are not fully insured or can not afford the expenses of the private system often have no other choice than using this system . But with private system everything is done in the shortest time with much more respect and care. It took less than 12days betweem my first visit, diagnosis and opetation. The private system costs rather too much but fortunately the insurance covers most of the expenses . The whole process of diagnosis, operation, chemo and rads took less than 6 months for me.
Love
Hanieh
0 -
Hi Hanieh
Thanks for posting your path report.
Its not possible from that report to say that your tumor is a true-medullary, one also needs to know what the tumor itself looked like. Medullary tumors are white/cream and fleshy. Most other IDC's are quite yellow and brittle, however I would say that the path report is certainly indicative of either true-medullary or atypical-medullary. The way the pathologist has described the cells sounds very much like medullary or medullary-like, but in that path report the exact details to say for sure aren't really there. The problem with true-medullary tumors is they are very to diagnose with 100% certainty. I believe the NHS had dropped the term altogether and now just uses medullary-like. Some features of medullary BC are found in non-medullary BC and can lead to confusion for inexperienced pathologists.
Regardless of this, the key thing for me would the strong presence of immune cells. This is a very good prognostic factor. It sounds like your body has mounted a strong immune response against the cancer, this would have also helped the chemotherapy to be maximally effective.
Hope this helps. If you need more explanation please just ask!
Tom
0 -
Hello Tom,
I was glad to know that your wife is well and I think that prune juice or prunes are the answer to her problem. We have to remember that her body will still be recovering from her treatment. I ate prunes regularly throughout my treatment and still do and never have any problems.
I was told a few years ago that the genetic testing was about £3,000 privately. I would not want it done now. I see so much of this testing as a way of creating worry and anxiety for something that may never happen.
I was glad to know that you enjoyed the photographs of the flowers.
I was interested in what you said about Herceptin because my friend and neighbour died from triple positive metastatic breast cancer last year and I tend to think it was all to do with the Herceptin. She was given so many different chemotherapy drugs as well that I think her body just packed up. It would be interesting to know about why some patients are resistant to Herceptin. I know that there are also tamoxifen failures, but I do not know why this happens.
It is a lovely sunny morning here and Raymond and I are going to get some fresh air in Sidmouth. We feel we need a break today.
Best wishes.
Sylvia
0 -
Hello Hanieh,
Thank you for your post. I was glad to know you enjoyed the flowers.
With reference to the taxanes, which I know go by the brand names of Taxol (paclitaxel) and Taxotere (docetaxel), you could always ask your oncologist why he decided not to use these in your particular case.
Perhaps for your own peace of mind you are right not to go for the BRCA tests. You do not have breast cancer in the family.
I do understand what you are saying about prophylactic treatment. I would not have chosen to go for prophylactic removal of my healthy left breast or the ovaries. Again, it is removing parts of your body that may never become affected. I was also not at all interested in having any kind of reconstructive surgery. I think when you are diagnosed with breast cancer it is probably prudent not to subject the body to too much of this, but this is my own preference. With all that surgery you can never know what you are stirring up and I also think the less anaesthetic your body is subjected to the better. I also understand the femininity side of it all. Again, these are personal decisions.
I think what your professor told you is probably wise. You have been through your treatment and have come out successfully and you must now get on with your life. I hope you get your consultation, discuss the Diphereline issue and make your decision with no regrets, otherwise you will never have peace of mind. Bear in mind there is a difference between a breast cancer consultant surgeon and an oncologist. I know that at my hospital here the different medical staff acted as a team and discussed patients as a team. I remember that after my surgery, and remember I had my six months of chemotherapy before surgery, my oncologist and breast cancer surgeon were together to tell me that I had an excellent pathology report. I have no complaints about my breast cancer treatment under the National Health Service and I had excellent treatment from start to finish. I was very happy and glad that I had an all-women team, breast cancer nurse, oncologist and breast cancer surgeon and even the chemotherapy nurses and radiotherapy nurses. They were all dedicated and only too happy to go that extra mile. I firmly believe in the National Health Service and think it was our finest moment when it was created in 1948. It is free at the point of use and funded out of taxation. I do not believe in medicine for profit. Our National Health Service is now underfunded and probably abused by a small number of patients.
It looks as though your oncologist has really answered your question by saying that the follicle stimulating hormone (FSH) produced by the pituitary gland is being kept under control by Diphereline injection. I suppose you could ask whether he thinks your FSH is too high and thus needs to be controlled to avoid recurrence.
If I were in your situation I think I would try to get this wound up and get on with my life.
Wishing you all the best.
Sylvia xxxx
0 -
Hi Sylvia
I hope the prune juice does do the trick. She has now been complaining of tender lower abdominal pain and also in her lower back. Releasing wind does seem to reduce it though. However she Googled ovarian cancer yesterday and of course this played on her mind. I guess for all my medical rational its playing on mine too. We are going to keep a close eye on things and if she still has pains next week we'll go and get a examination done. The joys of being a BC survivor hey!
As always love and prayers to you all
Tom
0 -
Hi Peter
Thanks a lot for your kindness to answer my questions.
Regardingyour wife's problems, I remember I had the same symptoms of mild to moderate abdominal and back pains with some bowel disorders 3 months after the end of my treatment. I was really anxious about having colon or ovarian cancer. All the symptoms I used to read on the Internet matched mine. I went for lots of examinations including blood tests and ultrasounds. Fortunately all came back clear. My Gp decided I needed some antidepressants and after taking them all the symptoms faded. This bc thing is a huge burden on us and your wife's problem could be just the signs of anxiety and stress.
Prayers and best wishes to you
Hanieh
0 -
Hello Tom
I can understand your anxiety about these aches and pains. This is the life of cancer survivors that we worry so much about anything that does not seem right in our bodies. The best thing is to get it checked out as soon as possible. Having "what ifs" floating through our brains is no good for us.
I do hope you and your family will manage to have a good weekend. It is Friday, so start winding down.
Thank you so very much for all you do on the thread.
Best wishes.
Sylvia
0
