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Elective Surgery - can you share experiences?

min
Member

Re: Elective Surgery - can you share experiences?

Hello Rachel. I can't believe how differently we are treated. My WLE was in July. The team were very quick on their advice about treatment. It was a sensible option to go for a bilateral mx. No fighting for it or not so far! I found it an easy decision but then I'm older than you (51) with a 22 year old son. I couldn't bear the thought of living through those weeks of testing and waitng for results. I'm scared too, but I believe it will lower my risk and that's what I'm hanging on to. Love Min

harp1970
Member

Re: Elective Surgery - can you share experiences?

Hi all,

Only just found this thread. I am having bilateral mx on 29th September. Had WLE in March on right breast and have just finished chemo. I asked for bilateral mx when i was diagnosed and surgeon refused, despite the fact that 9/10 women in Mum's family had BC under age 45, and my Mum had BC at 29 and again at 34. So I have had treatment and referred myself to see clinical psychologist and genetic counsellor, both of whom supported my decision. My oncologist also wrote to the surgeon suggesting double mx as best option for me, so the surgery is now going ahead. I wish I had looked into it years ago as our family history is so strong, despite the fact they can't find a gene fault. I have decided not to have reconstruction as I just want to get rid of as much tissue as possible and move on with normal life. I am scared though, now that the date is getting closer, and will be glad when it's over. I'm 40 with two teenage daughters.
Good luck to anyone making what is a very difficult decision.
Love Rachel x

min
Member

Re: Elective Surgery - can you share experiences?

Hi everyone1 I have just had 4 letters from my consultant. Super efficient. As I want a bilateral mx, I have to see a clinical psychologist. My consultant wrote , 'to check that my expectations are not too high, not as to whether I am sound of mine!' Not exactly his words but you get the drift. Made me laugh - my expectation is that I want to live and will do anything to remove the threat of cancer. I also have to see a geneticist. My consultant is supporting my choices. I have to have an mx on my right breast anyway. I have already seen the Plastic Surgeon and have another appointment towards the end of my chemo. I am having 6 x FEC. Most of me just wants to start and the rest of me is very, very, frightened.

Midge
Member

Re: Elective Surgery - can you share experiences?

Hi all

Saw my onc on thurs. She has arranged an app to have my ovaries scanned and did a ca125 tumour marker test. I am now waiting for the genetics letter to get to my surgeon to arrange an appointment to discuss bilateral mx and whether I want recon or not. Have to admit my onc was v shocked at the strength of conviction my genetic counsellor had that my cancer was genetic. I now wish I had another app to ask more questions. Will see what I can sort out.

Anyone considering not having recon? Is there a sig time difference between recon and no recon? Still feel like a time bomb, but don't know if I am over reacting.

Debx

Sandytoes
Member

Re: Elective Surgery - can you share experiences?

Kim,

I lost my grandmother and mother to breast cancer. My aunt was diagnosed last year and I now have it (and am "only" 33). I've seen a top geneticist and tested negatively for BRCA but they know that there are many other genes that have yet to be identified and the geneticist has said that he is certain that mine is genetic and has written a letter to my surgeon to state that he would support my decision for preventative surgery. I have to have a mastectomy on the left side anyway.

My sister also wants preventative surgery and has booked an appointment with the geneticist to pursue this.

It is so horrible living with the worry of it when you have lost close family members and watched them suffer.

x

elizabethtrace
Member

Re: Elective Surgery - can you share experiences?

hi I had my original diagnosis 11 years ago, left breast, wle, chemo and rads,
second diagnosis november last year, right breast, mx, chemo and rads,
I asked for a bi-lateral mx, but my surgeon refused and said he would do it at a later date,
I have since had genetic screening braca 1 and 2 but was told I was ok,

I now think I may have a bit of a battle on to get any further surgery, I am 45 years old and having had 2 primaries feel I have got a good case for the surgery, but I will have to speak to my surgeon again and find out for sure.

I really wish that my surgeon had just done the bi-lateral surgery I cannot live worrying about whether I am going to be ok or not, at the same time I know I have to get on with my life and with 3 young children, every single moment is precious and I respect that thought.

best wishes everyone x Liz x

kimmie
Member

Re: Elective Surgery - can you share experiences?

Hi
I lost my mum and nana to breast cancer and am awaiting to go for genetic testing. I saw the plastic surgeon nurse and she said that if I dont carry the gene the surgeon wont do preventative surgery?!

Kim x

Midge
Member

Re: Elective Surgery - can you share experiences?

Hi all

I have had the test done for brca1/2 and expect the results in a couple of months. My genetic counsellor thinks that it will probably be negative as the gene in my family seems to skip a generation, but that there is still a faulty gene present. I am hoping to persuade my team to do a bilateral mx and have my ovaries removed as at the moment I feel like a time bomb. I at least want my ovaries out as soon as possible, as there is ovarian cancer in the family and it is a sneaky so and so.

Am only 5 herceptins from being finished treatment and now I just feel like i am starting again with a totally new disease and this one does not just effect me.

Good luck with your decisions.

Debx

cannoliwings
Member

Re: Elective Surgery - can you share experiences?

Hi Ladies,
I feel loads stronger about making this decision after reading all your posts.

Sandytoes I hope it all goes really well for you and will keep checking out for posts from you and everyone in this section.

I am waiting for a letter from my Genetics Councillor to tell me all about probabilities etc (should be a fun read eh?!!) and go to both my surgeon and oncologist armed with information!

Talk to you all soon

Cannoliwings X

mnc
Member

Re: Elective Surgery - can you share experiences?

Hi

I had a mastectomy and immdiate dorsi flap reconstruction on my right brest in December 2009. Had chemo, radiotherapy, Herceptin and am on Tamoxifen. I saw my consultant on Friday 19th August 2011 who said my mammogram of my left breast was clear.

However, I have decided and spoke to the consultant about having my right breast even though the mammogram was clear, removed and reconstruced as I do not want to live with the worry of having cancer again nor do I want to go through chemo again. I am 52.

As my consultant said on Friday, I won't need to have my lymph nodes removed as my mammogram was clear so no lymphodema in my left arm, only in my right.

Just waiting for my appointment to come through for the plastic surgeon who did my reconstruction two years ago.

This has been an easy decision.

xxxxx

ickleme123
Member

Re: Elective Surgery - can you share experiences?

Hi Ladies,

Just thought that some of you may be interested in this web site

http://www.breastcancergenetics.co.uk/

Its the national hereditary breast cancer care line, they offer a 24/7 telephone help line - I found it very helpful

Tracey x

Sandytoes
Member

Re: Elective Surgery - can you share experiences?

Rattles, I can completely relate to that. It's a HUGE decision and I'm terrified. But I'm also terrified of being scared and worried all the time if I don't do it!! I think the fact that I have to have a mastectomy regardless might make it a bit easier for me - as I see it as keeping a bit of symmetry! If I was only having to have a lumpectomy I think it would be much more difficult. My op will be in just under 2 months (am having chemo first) and I'm going to start having counselling beforehand.

Rattles
Member

Re: Elective Surgery - can you share experiences?

Hi there, I thought I would reply to your post as I too am really struggling with the idea of elective surgery. I have a brca1 mutation. My story is that I had triple negative cancer (very large, aggressive tumour) went through chemo. surgery, rads. Then one year on got the brca1 diagnosis. Rationally, I think that I must have elective surgery, but I cant tell you how scared and upset I am. I really do not want to have it done. Of course, the idea of a further cancer is very frightening and I absolutely do not want this, for myself, my child, my partner. But, its just so hard to contemplate having more medical intervention, again. On the face of it, I did pretty well through my treatment and only got ill at the end, but it has taken me 18 months to get to a point where I feel "well." I feel like I am a coward to be honest and not helped as my family just do not understand my response. I know my response is a bit different to manyof the women I have come across with a similar diagnosis. Can anyone relate to this?!!
Rattles xxx

min
Member

Re: Elective Surgery - can you share experiences?

Hello! I am about to have chemo, followed by a double mastectomy with reconstruction. I am high risk, after having WLE and clear nodes. I am booked in for my op in 3 months time. Waiting to see oncologist about chemo. I couldn't go through the last 3 months again, or put my husband, son or friends through it. My younger sister is horrified. My older sister hasn't given her opinion yet. we lost our mom and eldest sister to BC. Thanks to them, mine was picked up on an annual mammogram. I do know that not all the breast care team are in favour of my treatment. I will see my consultant again on Tuesday, because he wants to explain it again to me. Anything to reduce the risk.

shaz590
Member

Re: Elective Surgery - can you share experiences?

Ductal Cancer In Situ.

If I had a family history, no matter how remote I would still ask for a double Mx. It does rather set your mind at rest in the future.

Blue_dragonfly
Member

Re: Elective Surgery - can you share experiences?

Morning ladies, I was diagnosed for 2 nd time at Christmas and was told I needed a mx this time. My hubby bought up having a double mx and was told not needed. Since then my diagnoses having 2 different tumour it has been talk about again. I'm being genetical tested soon. For 8 mths I've been wandering round with only 1 very large boob 42 EE, and I'm uncomfortable lob sided, so regardless of the risk side I want it gone!!! Seeing surgeon next month. Good luck with what ever you decide xxxx

cannoliwings
Member

Re: Elective Surgery - can you share experiences?

Hi Sharon,
Thanks for that - great that are happy with your decision and feeling good!!
The only surgery I needed was a lumpectomy as while it was grade 3, there was just one small lump less than 2 cm. So for me it would be totally preventative and fully elective. I reckon if I had to have a mastectomy on one side the decision would be clearer. I think its the recovery time and the interruption to life that puts me off, but that may be better than living under the dingy haze of a re-occurrence!

Sorry what is dcis?? I'm sure I should know.

All best,
CW

shaz590
Member

Re: Elective Surgery - can you share experiences?

Hi

I was diagnosed with b/c in my right breast over 4 years ago and due to losing my mother and two cousins with b/c I asked for my left breast to be removed at the same time. Good job I did as on biopsy I had 3 tumours in right breast and dcis in left breast which hadnt shown up. I then had chemo and radio. I think it was the best decision I have ever made. I thin if you have a family history of this sort you willalways be waiting the bc to strike in the breast you have left and if it does you'll have to go through chemo and radiotherapy again!!!!

I do not wear prosthesis and have no wish for reconstructive surgery and know that I am not alone in doing so. I feel fit and healthy and cannot see the point in wearing what amounts to a small sack of potatoes just to keep everyone else happy! What a fag.

Hope this has helped. I would recommend getting it done in one go!

Sharon

cannoliwings
Member

Re: Elective Surgery - can you share experiences?

Hey Sandytoes,
Thanks for your update. Its good that you have the support of your geneticist. I imagine there is an element of 'getting it done in one go' that is contributing to your decision too? If that's the case, I can imagine I would feel very similar. I haven't even had a meeting about this yet as my geneticist hasn't yet written to my surgeon or anything. I'm only 2/3 of the way through chemo at the moment so its all slightly hypothetical at this stage.

Jeez, its not a nice decision to have to make is it. It feels very barbaric to me, especially when it's elective. Sounds like something one would only do in an extreme emergency!! Sorry just being silly - don't to undermine where you are at at the moment which is a bit further ahead in the process than me. I really hope your appointment on Tuesday goes well and that you get all the support you need.
Hope you'll post if you feel like it.
Thanks for your post,
CW x

Sandytoes
Member

Re: Elective Surgery - can you share experiences?

Hello!

I've met up with a couple of surgeons this week. Both were keener to concentrate on the infected breast first (full mastectomy) and then worry about the other breast at a later date as they didn't want the oncological treatment to be held up if there were any complications on my healthy side. But my geneticist has written them a letter to say that although I am not a BRCA carrier (found this out on Tues) that my family history suggests a genetic link anyway and that he stand by my decision.

I have another appointment with my chosen surgeon on Tuesday and will go through my thoughts with her then.

How's your thought process going? It's a very hard decision...

x

Sandytoes
Member

Re: Elective Surgery - can you share experiences?

Kind of in control! The thought of being boobless for a while really worries me. But the fact that I have no choice but to lose one of my boobs anyway made the decision much easier for me I think. I haven't had the op yet either - so it wouldn't involve additional surgeries for me - just being under for a bit longer. I've also seen one oncoplastic surgeon already and the reconstruction is AMAZING! Really, really good and realistic. So I'm less scared of the whole thing now. And since losing my grandma and mother I was always worried about getting it anyway - and if I can reduce my risk of getting it again (and therefore reduce my worrying!) then that's good!

cannoliwings
Member

Re: Elective Surgery - can you share experiences?

Thanks for sharing Sandytoes, sounds like you area really in control of your decision which is v cool of you. Hope your meetings with Surgeons goes well and it would be great to hear what they say if you are happy to tell me. Wishing you all the best. CW X

Sandytoes
Member

Re: Elective Surgery - can you share experiences?

Hello!

I've considered and decided I am having an elective bilateral mastectomy. I am 33 and lost my mother and maternal grandmother to breast cancer and my maternal aunt was diagnosed last year. I get the results of my BRCA testing tomorrow, but regardless of the result I have decided to have a bilateral mastectomy as, if I neat this BC diagnosis, I want to minimise my risk of having to go through this again or live with the worry. I have to have a left mastectomy anyway - so I'm just of the opinion that they can chop off the other one and then build me a brand new matching pair, rather than feeling lopsided.

I'll worry about ovaries at a later date. I haven't had children and realise I will probably be left infertile...but am going to deal with BC first and worry about that later!

I'm just over halfway through my chemo and meeting up with a surgeon this afternoon and an oncoplastic surgeon tomorrow - so will let you know what they say.

x

cannoliwings
Member

Elective Surgery - can you share experiences?

Hi Ladies,
I hope you are all doing OK today. I've had my second round of chemo on Friday and am trying to potter about at home and keep myself useful, which involves putting on my 'breezy' voice when any work calls get missed at the office and escape to my mobile!!

I wondered if anyone has had / may be considering an elective mastectomy and would be willing to share their experience. I have tested positive for one or more of the gene misprints which are accountable for a very high proportion of breast and ovarian cancers in the Ashkenasi Jewish population(am waiting to find out exactly and for some literature on facts and figures) and am considered high risk, having been diagnosed with BC at 30, both mother and maternal grandmother lost their lives to Ovarian C and now testing positive for this gene mutation. The only person I know who did this electively is the movie star Chrstina Applegate but I cant get her people to talk to my people (!) I'm not keen on more surgery after having a lumpectomy, and cant get my head around the idea of being breast free even if it was temporary, but at this point I am even less keen on a re occurrence. So, if anyone can share experiences I'd be so happy to hear from you. Am trying to just get through the chemo and then the radio while living life as normally and happily as possible and not jumping ahead to this, but as everyone knows, the brain does wander/ wonder....
Be great to hear back, thank you for reading,
Cannoliwings X