Hi Ladies
Im searching for some direction.
I had a mastectomy 6 weeks ago, and my path report showed only DCIS just behind and pure pagets (nipple cancer). I was told then that I didnt need any further treatment. Test for hormone receptors were only 2 out of 8 - only slightly positive.
However, I have just had a call from my bcn advising me that my surgeon is recommending that I take tamoxifen to protect the other breast.
I have read that my cancer is highly likely to be receptive to her2(herceptin), but a test for this has not been done (and wont be because it is DCIS and not invasive).
I am now at a loss. I am 42. Do I take it? Will it really help?
What are your opinions?
Lisa
tamoxifen halves your risk of getting cancer in the opposite breast so it’s worth considering, but you do increase slightly your risk of getting uterine cancer, it’s minimal though.
I stopped taking tamoxifen after two and a half years due to side effects e.g. hot flushes, constipation and a metallic taste in the mouth, but not everyone has these symptoms
Mole
Hi Mole
It halves the chances if the cancer is hormone receptive - mine only scored 2 out of 8, and I was told last week, it wasnt receptive enough.
My issue is that my type of cancer (pagets) is highly likely to be her2 receptive - report suggest that 80%+ of pagets is her2 receptive, and only marginally hormone receptive.
However, ,they arent even doing the her2 test!! So, if my cancer was caused by over-expression of her2 they are not doing anything about that, but throwing a drug at me that will have little effect on the breast cancer, but increase my changes of differnt types of cancer!
Lisa
Hello Lisa - haven’t heard from you for a while!!
Re the tamoxifen, ask you bc nurse for some literature then when you’ve made notes, make an appt to see your surgeon again. Because what you say sounds right to me…
Re: the HER2 status. This is an ongoing thing for me. Remember I had widespread high grade DCIS AND a small (1.1cm) grade 3 Tumour within the DCIS. The DCIS was HER2 +++. The Tumour is HER2 ++.
Now, in order to be within the criteria for herceptin, you must have ENOUGH receptors for the drug on the cancer cells for it to be of benefit. DCIS cells are not ‘true’ cancer cells - they do not have the ability to spread. DCIS nearly always tests HER2 positive, but it is irrelevant to course of treatment. So that’s why they aren’t doing further tests on you.
With me, HER2 ++ is borderline for beeing within the criteria, so my tumour cells are undergoing another test called FISH - where they are stained and looked at under an electron microscope - to see IF I’ll ‘come in the critereia’.
For me, the problem is that my Onc has said to me ’ you will without a doubt benefit from heceptin, so I do hope your FISH is positive’. If it is not, in his opinion I would STILL benefit, but (due to NICE guidelines) I would not be able to have it on NHS. Which is how come people end up paying for their drugs… I haven’t investigated cost - I’m of the understanding that Herceptin for one year costs upwards of £50,000. So we will be remortgaging our house if that happens…
Hope that’s useful!!
Big Love Td xxx
Hi Td
How is your treatment going? I was expecting to have to go through the same as you actually. Having read about Pagets being Her2, so expected (the same as my surgeon) that I would have some nasty cancer cells lurking around somewhere. I have been thinking about you - and when I ran the race for life a couple of weeks ago, I put you on the back of my vest with others that I have spoken to! So hopefully some of the money I raised will come your way somehow.
I read that herceptin costs £1700 a shot! I raised enough for only just over half I am afraid!
I had an appt with my surgeon on Monday, and she told me that ‘As far as I can possibly say when talking about cancer, then I think the surgery has been a cure’. She then told me about a lady she treated 29 years ago with the same type of cancer, and she had recently received a letter from her, thanking her for giving her more time. The lady had recently retired from teaching, so I guess she was doing a lot of analysis of her life.
For me, because I am classed as ‘young’, she said that she is willing to ‘offer’ me tamoxifen (if I want it) to protect the other breast, since I am still at a higher risk than most woman of some form of cancer returning in the other breast. Over time, I was told, this will become less, and eventually the risk will be the same as any other woman. However, a returning cancer will not necessarily be the same type and may present itself as invasive. She suggested that I could try it, and see how I feel, and if I dont like it, stop. There was no pressure.
So, I am thinking again on what to do. I am going for a prosthesis fitting on Monday with bcc, and I need to tell her then.
I have also asked my GP to refer me for a reconstruction now - to Elaine Sassoon, since my experience with the ‘local’ plastic man, didnt enthus me at all.
I hope your FISH testing is positive too - isnt strange what we wish for! 6 months ago, we wouldnt be wishing for this!
All I want for Christmas is a boob… all you want is more treatment.
When will you find out about the FISH tests? Soon?
Lisa
Lisa - hope you don’t mind me adding my comments with regard to Tamoxifen.
I was diagnosed with DCIS last August and had a lumpectomy (WLE) of an area of 5.5cms. Thankfully I didn’t need mastectomy but it was a close run thing. Had 25 sessions of radiotherapy.
My surgeon recommended that I take Tamoxifen as the cells were “High Grade” and “angry” - I agreed to take it on the understanding that tests would be made to decide on the er+/- (hormone receptor) status - the results would then prove whether I needed to keep taking it. After a two month wait and endless phone calls to the hospital for the results I was informed that they don’t routinely test DCIS !!!
So - I’m taking Tamoxifen but I may not need it - I’m having hot flushes (more like cold drenches during the night!!!) but thankfully don’t seem to be suffering any other symptoms - my only concern is - in taking Tamoxifen you have to accept that there are side effects which are serious - cervical/ovarian cancer and thrombosis just two which spring to mind. Will leave the questions until September when I meet the surgeon again.
But hey - we’ve survived breast cancer - we can rule the world!!!
Good Luck with your future treatment, whatever it may be
Maddy xx
Hi Maddy
Thanks for your input!
I went to see the bcn again today, primarily to be fitted for a prosthesis, but she also gave me the letter/form for the GP to prescribe me Tamoxifen.
I have a course and exam next week, so I wont be doing anything until after then.
She explained to me again that it is not adjuvent but preventative for the other breast.
I have been thinking about it a lot. At 42, I do want to do anything I can to prevent it coming back, and I suppose that at some point I will go through menopause with all the symptoms. I wouldnt be offered HRT.
So inecvitably I will go through this at some point.
However, as you say it is the womb-lining that can be affected. I asked if there was a baseline test that they could do before I started - but she said it is the lining of the womb which can be affected - and they would only investigate there were two or more abnormal bleeds. A smear wouldnt show anything. She also told me that it is very rare that it happens, and that history had shown its effectiveness against breast cancer after 5 years, and problems if it was administered for 10 years or longer. Appareently, it was the norm that women were given tamosifen for life, but now it is known that it is not necessary and can cause problems.
I still am not decided what to do.
Yep - I must admit, I feel good this side of bc… I was even pleased to get my new breast this morning! I wouldnt have thought so 6 months ago!
LisaX