pre menopausal BC, any answers?
pre menopausal BC, any answers? Hi
It seems to me, doing my research (naughty patient), that everything I read is in conflict, american women seem to know their BC by name number and rank, know their meds, etc… UK women seem to be given a vaguery of info, I read in 3 articles that all prememopausel cancers should be given chemo, (sweden and usa) but in this country they woild call that overtreatment.
Am I alone in wanting overtreatment?
I don’t want mets in 6 months or 2 years or ever, I want to kill this bugger off now, anyone else with a small tumour? What did you get and were you happy?
Anxious and angry
want to fight, but but don’t know where to direct my anger
Claire
Hi Claire Hi Claire,
I am pre-menopausal too, diagnosed in March aged 34. I was told by my surgeon and oncologist that regardless of how big the tumour turned out to be and even if there were no lymph nodes involved I would definately be having chemo and rads after the mastectomy. They said that they give this to all younger women as a precaution to ‘mop up’ any stray cells.
Turns out my tumour was grade 3 and 25/28 lymph nodes were involved. Having spoken to other younger women in my area and my bc nurse it seems that we are all having chemo and rads simply because of our age.
I would certainly pursue this as I know I want all the treatment I can get my hands on to give me the best possible chance!
Take care and let us know how you get on,
Kelly
-x-
Thanks Kelly Hi
I was just going back in the forum and reading old posts, and I had just been reading your early posts, God this is hell, but how lucky’ we are to be able to communicate with other BC victims/survivors, We have some power / knowledge, Knowing the questions and understanding the jargon makes me feel more in control,
Breast cancer nurse was reassuring me only this morning that chemo was not for all pre menopausal women…who to believe…I think I’m going to be an angry patient
ClaireX
Claire
You’re not the only angry patient so don’t worry on that front… I’m angry for a different reason, but I am ranting and fuming and very bitter and twisted inside!
I was 41 when diagnosed and apparently classed as a younger woman (though post menopausal - finished it when I was 35!) and I got FEC.
Hope you can find the answers to your worries.
Lynn x
pre menopausal bc Hi Claire
I am 35 pre menopausal
My tumour was also small - 2cm but graded as grade 3 so very aggressive
Right from the start i was told that I would be having chemotherapy. This was told to me even before I had my WLE. My surgeon said that If I was a woman in my eighties she would not bother with chemotherapy but as I (hopefully) have a good 30-50 years of living to get through she wanted to make sure everything was done to get rid of the cancer
I will be starting chemotherapy on Thursday 31st May -having 3 lots of FEC then 3 lots of another drug (taxotere i think)
After that 25 rads and hormone treatment as its also hormone receptive
So looks like i am getting the full whammy which is fine with me - ’ Bring it on’
So far I have been happy with everything that I have received from the hosp -next week is going to be busy as I have to fit in bone scan, CT scan, ECG and chemo pre chat. So looks like next tuesday will be the only day I will manage to get to work. I have already told my work that I won’t be working during chemotherapy
Hope this helps
Julie
pre menopausal Hello Claire,
I had 3 tumuors one found by feel, one by mammogram and one as a surprise during the mastectomy!
I was told because of my age (40) and being pre menopausal and the amount of tumours, i would be having chemo, rads and tamoxifen even though the lymph nodes were clear, the onc said this was just an insurance policy as he was certain it had not spread and this hopefully should cover me against any secondries or any chance it may spread into the other breast.
I hope this has helped part way to answering your question and i wish you well for the future.
Candy
Hi Claire Hi Claire
I was premenopausal at dx - I was 42.
My tumour was only 1.4cm with no lymph nodes and clear margins. I was led to believe from surgeon I would only need radiotherapy.
However when I went to see onc he put all the factors of my tumour in a system called adjuvant on line and then put in the various treatments to see what the survival rates were - what joy!!!
ANyway with just radio and tamoxifen it was 88% but with chemo added it was 98% so I obviously took the chemo.
Sometimes in my worse moments I wonder if I did the right thing as the hair loss was so traumatic and I was thrown into a hideous early menopause by the chemo and now feel like an old woman from a very young 42 year old .
Yo uhave to weigh up the pros and cons but ask your onc to use adjuvant on line so you can make an informed choice.
Love Alise
Hi Clare.
I know what you mean.
I’m a member of Young Surival Coalition (www.youngsurvival.org), an international breast cancer support website specifically for premenopausal women.
Most of the members are from the USA and they do all seem to get a pathology report following diagnosis. I think that’s partly to do with the fact that their insurance companies need all info upfront so they can decide what treatment they will or won’t pay for.
I asked my oncologist why they get path reports early on and we don’t and he said, “Basically it’s because their pathologists are crap (his word!)” Granted I often see women posting that the pathology of their cancer is vastly different after surgery that they were told originally. I suspect our doctors have an idea what is going on from the time they look at the core biopsy but just prefer to wait until they know for sure.
It is easy to think that other countries do it better because they do it differently but I now think Europe offers some of the finest care in the world. For example, US women have to fight to get FEC because it is expensive (it is also less cardio-toxic than AC which is the US standard). In Europe we get it automatically if it is deemed to be the appropriate treatment cocktail.
As for overtreatment? Remember that chemotherapy is extremely toxic and can - and does - cause heart failure in some people. It is not something to take on lightly. Oncology is not an exact science and I just think they prefer here to look at each case individually.
That said, if there is any indication that chemo may be of benefit to you the decision may be open to negotiation. A good oncology team will want to involve you in the decision-making process. If you aren’t happy with what you are being offered it may be an idea to seek a second opinion.
Good luck.
Lola x
I’m 45 and pre-menopausal. I had two tumours ,Grade 2 , (6mm and 12mm), with extensive LCIS is both breasts although no spread into the nodes - op was in March.
I was told before surgery that I wouldn’t have radiotherapy but would be having chemo. I geared myself up for that, but after the results came through, my consultant said I didn’t need chemo. I have actually had a hard time coming to terms with that - as awful as it is, I wanted to make sure any stray monsters got zapped. I was quite upset, still am really.
I am 8/8 for both oestrogen and progesterone so I am on Tamoxifen, awaiting a second mastectomy.
I am glad that someone else feels like me.
Best wishes,
Jacki xx
thanks for replies Hi
Thanks for replying, we had a very thoughtful time considering the posts, looking at the odds, of course we all want 98%, Is it worth it for the grief and damage of chemo, I also really appreciated the comments on US bc diagnosis, knowing that you are all out there and facing the same fears as me is so helpful, my friends are great, although not my more immediate friends, one in particular has just vanished out of my life, her way of dealing with it, I expect. Other friends, acquaintainces really have taken me on as a project and I love it, phone calls, coffees etc.
Its such a weird and lateral experience, nothing will ever be the same again.
Oh and has anybody tried to read to get their brain into another place, I started reading at 4 in the morning the day after diagnosis, an innocuous looking book, 3 chapters from end, woman gets breast cancer, tried shifting genres, a thriller to stop my brain from processing, breast cancer 4 chapters from end, same thing with this mornings book, hero shags woman who ends up having one breast, she was very sexual though which gave me hope, i love sex and dread the effect all of this is going to have on one of the best things about life.
ooops, went off a bit there!
claire
Hi Claire
I was diagnosed at 39 and premenopausal and after WLE they graded the cancers as grade 2 and as no lymph node was involved they didn’t think Chemotherapy was necessary - had to have a mastectomy as there was no clear margin and so I didn’t have radiotherapy either. Tamoxifen was recommended to me which I decided against as it only made a difference of about 2-3% to my prognosis. All was well as I recovered from mastectomy and immediate LD recon when I found a lump in my neck a month ago - currently waiting for results of the lump removal op and hoping it is nothing sinister as otherwise the prognosis will all alter.
We all have different attitude to treatment - some of us want everything that may possibly kill the cancer - others like to weigh up the benefits and risks. Stating the obvious - it is not at all easy. The last five months have passed quickly but some days have been so difficult but we came through it and whatever I get told about my neck we’ll face it and deal with it.
Best of luck - don’t stop asking questions and demand the best available treatment for you. In the NHS if you don’t ask for information you don’t get it.
All the best, Chloe
Hi Claire,
When I was first diagnosed the other week I tried all sorts to distract my brain from wandering off to the “dark side”. Had to draw the line at ironing though, far too much to contemplate!!! I like a good thriller but it must have been a shock to get to the BC part of the story you were reading. I think I’dve chucked it in the bin!!
My best friend for the last 15 years has totally disappeared off the radar whereas others I have known only for a short time have been fantastic, just as they have been at work. S’pose some people can’t handle illness or adversity in any shape or form until it slaps them in the face. They do a runner and then when they are in the doldrums they want everybody’s sympathy. I truly hope you get your treatment. I’ve got my op soon and won’t know about the nodes until the 1st week in June. Coincidentally, just before another 50th birthday!!!
Kind regards XXX
Hi Claire It seems to me that there is a lot of differing opinions depending on the particular consultant that you see, which is why it never hurts to seek a second opinion and find out exactly what options are possibly available to you.
When I was first dx, the advice I was given by my first surgeon was that even if the cancer had not spread to my lymph’s (it had) , it may be wise to have chemo because I am young, which seems to correspond to the research that you have been reading.
I was the complete opposite to you though. Had I not had lymph involvement, there is absolutely no way I would have done chemo.
Have you joined this support site yet?
Visit me there. There is a ‘babes of the bunch’ private message forum.
All the best
Mrs S xx