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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
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
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
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!
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
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
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
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
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
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.
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.
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
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.
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
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
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
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
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
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
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
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
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.
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
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
Hi Min
It's good to be in touch with others going through the same thing(though not good that we're going through it of course!) Do you have a date for your op yet? Would be good to keep in touch and support one another
Rachel x
Hi Rachel. No date yet. I think it will be set when I see the plastic surgeon in Nov. Apparently, I'll need some time to recover from chemo! It is scary, but I'm not going to change my mind. I have two sisters who were shocked at my decision, but are now coming around to it. Only we know the fear and trauma the original diagnosis caused. I hope they never have to know it. Please keep in touch. Are you having reconstruction? The first meeting I had with my Plastic surgeon was one of the funniest things ever. My husbandsaid it was like a carry on sketch, with the man saying hmmm and me giggling! How was chemo for you? Did you have FEC? Love Min x
Hi Min
It's my girls that really concern me because they will have to face the same decision one day. I would love to think they will not get BC but with our family history it is highly likely they will. I have had 3 FEC and 3 TAX. For me FEC wasn't too bad at all. I was very fit before chemo and sailed through it, was still walking about 4 miles a day with my dog. There were side effects but they didn't last long. I was sick the first time but they gave me a drug called Emend which stopped it and I was never sick again, so definitely worth asking for that. The TAX has been much harder and given me a lot of pain and I am now feeling very tired. But I have done it and that feels like a real achievement. Now I just need to get fit for op, so am starting swimming next week. Chemo sounds very scary and there are some days when you just have to give into it but there were lots of good days too. Are you having 6 FEC?
Ihave decided not to have reconstruction. My Mum was never offered it (this was the 70s) and she has been fine with prostheses. I think it's a personal decision and I think I've made the right one for me, though I do wonder whether I will ever find my Mr Right or have the confidence to date again. (I am divorced) but my priority is being here for my gorgeous girls. Rachel x
Hi Rachel. My mom and sister didn't have reconstruction Not offered to my mom 33 years ago and my sister wasn't able to have it. Yes, I was terribly upset when I was told to go and have the gene test and that my son would be high risk. No-on could understand the terrible guilt that overwhelms you. My aunt has the gene and like you has 2 daughters. She reminded me that we knew nothing about these genes and who knows if we have passed them on anyway. You will feel confident again - just think what you have been through. You deserve happiness. There will be someone out there for you. You sound like such a lovely person. I'm on my second marriage and my husband is wonderful. As they say, you have to kiss alot of frogs before you meet your prince. I wonder if Kate had to do that before she met William! I'm due to have 6 FEC and still waiting to hear about herceptin. I'm trying to stay fit. Gave up the gym membership before last op. I think swimming might be the best exercise. Are you having any lymph nodes removed?
Hi Min
Thanks for your message. I am having full node clearance as the cancer had spread to the sentinel lymph node. I am going to enjoy the next four weeks before surgery, as the last 6 mgonths have been full of hospitals and chemo. I am really looking forward to october half term when I am going to Vienna with my best friend, her hubby and my eldest daughter. It's only 3 1/2 weeks after my op but am determined to go. Am hoping to go back to work after that part time, and hoping to go back full time in December. I really miss my job. I teach in a very small primary school and couldn't work through chemo because of germs carried by small children.
Your comment about kissing frogs made me laugh! My best friend says I will find my prince one day when it's right for me. Who knows? If not I'll just buy a puppy. Lots of luck for chemo-TLC is important so glad you have a lovely hubby to look after you. My lovely mum has been looking after me and my girls so I've been spoiled. Take care Love Rachel x
Hello!
I'm still awaiting the date of my op - hopefully mid October. Got my letter from my geneticist today saying he totally supports my decision to have a bilateral mx despite not being a BRCA carrier due to my family history - and surgeon seems on board now.
Now I just need a date! Final TAX in 11 days...!!
x
Hi All,
My onc told me that we would discuss surgery near the end of my chemo as if I have surgery it prob means a wouldn't need radio. Once I get a few more facts and figures from Genetic Counsellor I will try to make that strange decision - whether the risk reduction is worth the surgery. I don't think I could go ahead without a recon so... I an being treated at UCLH in London and so far the BCN and oncs have been extremely positive about the onco plastic surgeons there. I have just had my 3rd Fec on Friday and am feeling pretty revolting and nauseous so trying to chill out and relax and not get ahead of myself!!
Sandytoes - glad you have all the support around you and hope you get your op. date soon
CW x