New Member Need guidance on Surgery

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Hi All

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.

 

Any advise?

 

Cheers

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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.  

 

 

 

 

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Hi
I Have been recently diagnosed , and I also would like surgery , in my case to the colon where this little.nasty thing has decided to go and hide for 8 years and now is here ,
The docs have mentioned surgery but I am unclear at the moment ,
So far it seems as if it is in one place but I have just had a biopsy on my thyroid and awaiting results ,
I am 62 and no spring chicken ,but I feel " forever young "
All I can say in advice , though nothing medical as " I know nothing " is try and forget anything to do with " years " everyone is different and no one knows anything so there is no reason to be optimistic about the future , so why not believe that everything will be all right on the night , so at least we can continue to live through it ,
I hope that I have been of help and we are all here for everybody ,
Lots of love
Marcelle xxx

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, I missed out the word " not "
It should have read " no reason not to be optimistic "

Please accept my apologies ,

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I would definitely opt for surgery. I had a mastectomy in February 2013 (originally diagnosed in July 2012 with a clear scan apart from the primary in September 2012). The day prior to my scheduled surgery a CT scan showed lung mets however the operation went ahead. I have remained stable (since August 2013) on chemo and am in my second year of Taxol. My sons were 14 and 11, my eldest will be 19 in two weeks and my youngest is 16. I recovered from surgery in a week - operation Tuesday, discharged Friday, out watching football on the Saturday (!) dressings off the following Wednesday. My Consultant said removing the primary would give me the best chance and I will be forever grateful for these years. I am well and have an active liife. Wishing you the very best xx

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Just to add - I have Herceptin every three weeks. There was no pain from the surgery, it was absolutely fine. The sister who originally did my chemo cried when she heard it had spread. However she told me to get angry and fight xx

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Yes my youngest was 11, he is now 16 and I am not planning on leaving any time soon.

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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

Moijanxx

 

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.

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???

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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

Moijanxx???

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Stacey
Chemo can control lobular cancer, as with all of us nothing is guaranteed but there are many treatments they can try.
Try to focus on your life today and enjoying today, I know it’s hard.

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Stacy how was the Oncologist?

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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

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I have decided to have surgery, I am not sure it will improve my life expectancy but the thought of open sores and dressings is too much. Also open sores and me being in and out of hospital is not a good combination. Breast Care nurse was very good and we made a list of issues. Due to see surgeon next week. Had last chemo this week but now have flemmy chest to get over. It’s a **bleep** disease