I hope your flemmy chest clears very soon. FWIW, I think you made the right decision. Better to have surgery with a limited time frame for recovery than open wounds. Your quality of life is what matters.
Hi everyone, was diagnosed with primary in June 2016 and secondary July 2016 in the bones. I am on EC chemo and Zometa. Was told by my oncologist that the surgery does not extend life, however she told me that I will have to decide whether to have it or not, I am not exactly sure what she means, but I think I will choose to have it. Still have 2 more cycles to go on chemo, then proably scan, and we will see. The lump has shrunk a little, that is what they said in the ultrasaound, and it feels softer. It was originally 8 cm though....So you are not alone in your thoughs, I will save this tread for future reference and sharing how our things are going. Hugs all
Sorry I did not notice your post. The onc was really nice, I felt very comfortable with him. I'm on Anastrozole for now and will have an IV of Zoledronic acid once a month for my bones. See him again in January after CT scan to see if the Anastrozole is helping.
Thanks Moijan. I thought what the surgeon said did not make sense.
I am sure you are right about stress, the surgeon commented that it's "anecdotal" but stress feeds cancer. Stress has been a big factor in my life being the carer for my husband until he died in August, so it may be part of the reason my cancer is now so widespread. As I'm sure everyone is tired of me saying the same thing, but this diagnosis has been dragging on since July and every step it's been one more bit of bad news after the other.
At least I got a call from someone today saying that the oncologist has the referall letter from the surgeon and suggested I call his secretary in the next few days if I don't hear because, "he has a lot of referals lately." Arghhh.
Note to self: Destress!
Hi Stacey, obviously chemo IS effective against Lobular, or it would not have worked for me! Started in 2001
i had the usual that we all got, pre op, not sure now if it was fec, but i did have a mix with Doxytaxel in it
after my op..( my tumour was 8x7cms..pretty large, it was shattered into several scattered bits..so still needed the mastec)
i was offered more chemo, Taxotere. This made me nutrapenic several times as i recall! So it hits hard. i then had rads to chest wall and armpit. Then went onto a trial between Tamoxifen and Letroxole, this trial found such good results that it was halted early and we were all put on Letrozole.
once I was found to have metastases, Capecitabine controlled the cancer for almost two years, then tried letro agsin which didnt work, followed by Vinorelbine ...not sure it did a lot but was on that for about 6 months.
Now am on Eribulin, which is funded by the drugs fund and was told i could have it as three chemos had failed. so do take heart. Currently i am doing very well, but when/if this fails, im expecting to go on Ibrance
as will have had 4 failures.
i will add here that looking back over my tumour markers.....over the past 16 months, Stress is clearly shown to have a very negative effect on my cancer, so do ask lots of questions, keep breathing deeply, and take along an advocate if you expect a difficult interview.
best of luck, do let us know how it goesxx
The surgeon said chemo is not very effective against lobular. I suspect she meant pre-op, because at our first meeting she said she was not going to refer me to an oncologist. . I will just have to wait to talk to the oncologist because I don't understand why women with lobular are given chemo at all. If it didn't work it then why would it ever be given?
I am afraid hope does not live at my address anymore, so I just have to plod on until I find some normality again.
Oh Staceyxx such a lot to take in for you all at once!
however, I also have lobular bc, and its in the bones and the liver. From what you have said, maybe they dont feel its neccessary to operate? Obviously we cant second guess them. I suppose you will have a long list of questions for them when you meet.
With bones, they often treat it with Zometa or Denusamab, but you likely know this. The abdo mets...well my wildest guess thinks chemo, so maybe thats why They think thats the best option and also, (i was offered this pre op) if it works for you then maybe your primary will shrink of disappear, which was what they hoped for, for me.
As for extending life expectancy.....no one really knows......we just have to trust them( or get a second opinion)
Im not sure this has helped, but please keep in touch..try to travel hopefully, till you have your appointment.
much love, Moijanxx💜💚💜💚
Thanks everyone for your responses.
If I had been offered surgery I would take it, that's for sure. It is just logical that removing as much cancer as possible is going to help, regardless. When I get to see an oncologist I am going to ask why it is not standard practice. (No clue when I will see the oncologist ... although an "urgent" request was supposed to have been made last Thursday.)
My cancer is lobular and it's traveled to my bones (not told exactly where yet) and lymph nodes in my abdomen, by my pancreas and probably elsewhere. Basically, I am awash with it and haven't a clue what treatment will be offered. I was on Letrozole for a month but had to stop it because it made my heart race. So I'm sure I'll be on an alternative .. and more.
Hi Stacey and Wendy.
just wanted to echo the others about having the primary removed. i was told that getting rid of the tumour gave the body a chance to get to grips with fighting the disease.
i had pre op chemo in case it could avoid a mastectomy. It shrank the tumour but not enough and I had the mastec. At diagnosis, all my lymph nodes on that side 12/13 were full of cancer and it had grown outside them to sit in the fatty tussue under my arm. I had it all removed in 2001. And went onto hormone treatment after chemo. My secondaries came back in around 2013.
i would just caution about reading too much into stats, we are all aware of what they say. However, when they do these studies they arent comparing like with like, eg lots of different b.c's , lots of different ages, some people have other major diseases, some dont.. Some women live the North, south, east or west, which can place them next to power stations, or heavy exhaust fumes, others in leafy countyside..everyone is lumped in together!
So stats are just a projection, a guide, but really dont mean much at all. A lot of us secondary ladies choose just to park them aside and not dwell on them. No point.xx
So, your choices, well if it were me, id have the surgery if the doctors advise it. I wouldnt expect them to say how long i'll live, as they cant tell! Anyway, things can change, so I just travel hopefully( and i was given a poor prognosis in 2001)
hope this helpsxx
Thanks, I know I should enjoy everyday and not think about the "end", and I know we all have to go sometime and in one way we are blessed because we know are time is limited so we can engage in our lives 100% and make the most of our time.
My main issue is planning for our son, he is 11 now and leaving a child at 14 say, is very different to leaving a son at 19, when he is off to uni and making his own way in the world.
Hi Wendy and Stacey, I'm sorry you've found yourselves in the Secondary club. I have been living with bone mets for six years now and although I still have wobbly days I have adjusted to a 'new normal'.
In terms of surgery it generaly seems that once you have secondaries a lot of the medics are reluctant to operate on the primary. Some will do so once you have been stable for a while. Stacey is right, there does seem to be some indication now that removal of the primary can be linked to longer survival but it hasn't been proved. I think a lot of the question is how you feel about it yourself, some women just want to get rid of as much of the cancer in their bodies as possible and really want lumpectomy/mastectomy surgery. I personally would want to get rid of the primary but we are all different.
There is a lot to take on board and digest and adapt to in the initial months and you need to take things at your own pace and try to be gentle with yourselves. There is lots of support here on the forums and we will do our best to answer your questions and share our experiences.
I found it useful to write down my questions when I had Onc appts or else I'd forget to mention something! I hope you get answers, explanations and of course a good treatment plan.
Best wishes, Julie xx
I can so relate to your situation, all summer I cried everyday, especially when I was on my own driving, one day I ended up sobbing my heart out in an emergency bay on the M25. I have seen a psycologist (I resisted it to begin with) and just talking to her has helped she has given me no pointers as she feels I am dealing with it all perfectly normally butit has helped and you are entitled to session from NHS. She calmed me down as I was trying to organise the non cancer rest of me life in 2 weeks.
I was also not offered surgery, in fact when I said I just want the primary removed they said it was not possible due to position and size and a waste of my energy, so when I was offered it during the last appointment you could have knocked meover with a feather.
I am a few months ahead of you and it does get easier I can go a whole hour without thinking about it. I have carved the next few months up into treatent chunks and I am now trying to fitin nice things around my treatments and my fatigue.
My diagnosis of secondary was confirmed this week ... and that's from having my screening scan on 4 July!
I am waiting for an oncologist appointment, but was not offered any surgery by the surgeon. She said the point of surgery is to stop the cancer spreading and that's already happened. Personally, I would like the primary tumour and lymph nodes removed, but that's not going to happen.
However, I read a U.S. study recently that said if the primary tumour is removed it extends life. Sorry, but I didn't save the link ... someone here might know since I found it on another thread. If you look at the threads most women seem to have found mastectomy less difficult than they imagined it.
I think about cancer 24/7 too. And I have a million questions now about how to organize my life that send me into tears.
I am 47 years old, primary diagnosis in May 16, secondary June 16, I am HER2 positive I started chemo (docatille, Herceptin and Persumab (not sure how to spell these things) in July, at the last oncologist appointment I was offered a mastectomy, up to this point it was not being offered due to the fact it had spread. Me being me asked "are we not just rearranging the deck chairs on the Titanic", what is the point. I have been told it will stop the chance of my tumour becoming an open wound. Is it worth the pain of surgery and recovery?
On secondary diagnosis I was told I had years and years to live, when I look at the internet 3/5 seems the average, my oncologists refuse to give any life expectancy. I have a son who is 11, I just don't want to leave him as a child. How long can I live, I am self employed and scared of giving up work and thinking about cancer 24/7.