I’m 36 and was recently diagnosed with bc; mother died of bc at 41. Had meeting with consultant today for treatment plan. He’s basically given me some options, as we don’t know if my bc is genetically inherited. I can either have: a) lumpectomy, chemo and rads, b) Left mastectomy and chemo, or c) bilateral mastectomy and chemo. What a blooming decision to have to make! He was very kind though and gave me until Monday to decide I’m going to be genetically tested but unfortunately the results will take a few months to come back, and I obviously can’t delay treatment until then. I’m really torn about what to do. Part of me thinks; just whip them both off and be done with it, but another part of me just wants to go with the least invasive option. Please tell me what you’d all do in my situation!?!? Oh, and if anyone out there’s had mastectomy can you tell me how bad it was pain/recovery wise.
Hi Caro, hard decisions. I am a lot older than you, 57 but my mother also died of bc at age 63. I was diagnosed with bc in March this year after mammogram, I was sent away to make a decision which op to have and after a lot of soul searching I decided to have mx. Went back and told the consultant she then said they would do a lumpectomy and everything would be fine. I had the lumpectomy and was very pleased with the result as well as feeling a sense of relief but when I went back for results I was told not enough margins cleared and they would have to do another lumpectomy. I felt I could not go through another lumpectomy and maybe the margins would not be clear again so I said no I wanted a mx with reconstruction. I had my mx on the 29th May and to be honest even though I had looked into it and looked at dvds and pictures of women who had gone through a mx, I had not realised until it happened to me how shocked and emotional I would be at seeing myself, thankfully I got over the shock and can look at myself without becoming emotional. I had my results yesterday of the biopsy and thankfully there is no spread and I will be taking tamoxifin for 5 years. I must add though that it has only been 2 weeks since my op and there was initially pain and discomfort but I am getting stronger and going for walks as well as doing light housework. I also feel confident going out in my own clothes as the prosethesis is a good match. I was lucky that my sentinel nodes were clear so I have not had my lymph nodes out, which makes movement less painful. I now feel I did the right thing having a mx as my mother had a lumpectomy and I have piece of mind that the tissue has been taken away. At the time of the op they fitted a temporary implant and saline will be inserted every couple of weeks until the tissue has stretched I will then have a silicone implant inserted. Is it worth you asking to speak to other women your own age who have had mx or lumpectomy’s I know that if you contact the helpline they may be able to put you in touch with others who have been in your position, I spoke to a couple of ladies and they certainly helped me.
Best wishes
Helen.
The service Helen mentioned at the end of her post is our telephone based peer support service. This service aims to put you in touch with a volunteer who has had a personal experience of breast cancer.
You have a tough decision to make and virtually no time at all in which to consider all options and be satisfied you have made the right decision! Is your bc er pos? If so then you will be offered tamoxifen which will give you protection, this will buy you time until the genetic results are back. You asked what others would do? Well, this is what I wouldn’t do and that is have to left mastectomy now only to find you’re contemplating a right mastectomy several months down the line if you test positive for a BRCA mutation. The reason being is if you have a reconstruction now after mastectomy and then another next year you could end up uneven and unhappy with the result. If you opt for bilateral mastectomy now how will you feel if the BRCA test comes back negative? Will you feel you’ve had your breasts removed for no reason? Only you know the answer to these questions. I personally, and please bear in mind this is only my opinion I would opt for lumpectomy and wait until the test results came back before deciding to proceed with preventative surgery. Preventative surgery needs careful consideration and in my opinion should not be hastily decided.
what a decision for you to have to make, im 32yrs old and had a bilateral preventative mastectomy as im brca2 positive and it was painful however my pain was managed very well with heavy painkillers. i underwent this 4 months ago and i am still sore now and again…
my aunt had BC and had a breast removed then brca2 was positive and went through the whole ordeal again. i cant tell you what to do but wish you all the luck in the world xx
Hi caro,
I was in the same position as you- diagnosed Jan 07 aged 34- heavy history of BC on fathers side resulting in young deaths and I was adamant I wanted both off!
I had mastectomy on cancer side and reconstruction in June 07 then went for counselling regarding the genetic side of things, although I was positive that whatever the outcome, i wanted both sides off. Genetic results came back positive for BRCA1 (no surprise to me really) and I had the other side off and reconstruction in May 08. I have NEVER regretted my decision. The operations went well and although painful, I recovered quickly. My boobs look fab! I kept my nipples and I now have peace of mind that whatever happens in the future, I have done everything I can possibly do to give myself the best chance (have also had ovaries out).
Its a very personal decision, but one I have never dwelled on or regretted and my life at present is good and returning to normal.
Hope this helps and good luck, whatever you decide
Best Wishes
Katyx
Hi,
poor you, c…p being told we have it but then to have to make a decision is really tough. I am definitely no expert but here are a few thoughts for you to mull over. You recover very fast from a lumpectomy and it really is a much smaller op. I know they vary but I was only in theatre for 40 minutes for my sentinel node biopsy and lumpectomy.Went home the next morning with one drain. So you could have the smallest op and then think I may have to have more surgery but at least I haven’t had too much. The other point is that you get rads which are actually more effective than chemo on the breast tissue itself. Another weapon to fight the beasties. Limited emotional upsets as you still look the same.
That is what I had but then no-one gave me a choice. I have not had a mx so can’t compare apart from how much longer friends took to get back to normal so I will leave someone else to discuss that part, who knows more.
I would ask the surgeon what he would choose if you were his/her wife/daughter. Also ask whether all options give the same chance of success. Many people have chemo first and surgery last, is this a possibility as that would give you time to get the tests back. You have to consider that there are genes that they don’t know enough about yet or haven’t found so you don’t always get a definite answer to whether you have a gene unless you have the BRCAs. You have not mentioned any details about your dx so it is hard to say. If you feel you want to say more about your dx you may find someone with exactly the same but further down the track comes on to talk to you.
Big hugs and if in doubt make the surgeon and onc decide for you
Lily x
Thank you ladies for all your thoughts and advice. There was a development over the weekend; I found out that my maternal grandmother died of ovarian cancer! I can’t believe I never knew this before (I was only a baby when she died). This has helped me make my decision; I’m pretty sure I’m going to go for a bilateral mastectomy. It seems pretty certain to me that my bc is genetic now, so I think I’d rather just get it over and done with, rather than have to undergo further surgery/treatment later. I’m really unsure about the reconstruction aspect though, and am thinking I might consider that at a later date and just focus on dealing with the cancer treatment now. I am a bit worried about the psychological issue of having no breasts, however. Has anyone else had mastectomy without recon?
I had a mx (only 1 side, not bi-lateral) after chemo and wasn’t offered reconstruction. I would have refused it anyway even had they offered it. They had to take all lymph on that side as well and go quite high up chest wall so I have a sort of dint near my armpit. The surgeon was excellent and any medical people who see my scar admire it. I have a prosthesis and honestly no-one knows the difference.
I have a family history of bc and just been tested along with my mum (another mx no reconstruction altho she was a lot older at diagnosis) but they reckon it could take 12-18 months for results. I have asked about mx on other side but they’ve said they don’t think it’s necessary and to be fair it was only an idea I had. My first mammo on remaining side after all chemo etc,etc was ok so that was good but I do have bone secondaries so that has to come into the mix. I may ask again at my next visit to surgeon.
Having said all this, it is only my personal experience and feelings and I have honestly never been bothered by only having 1 real boob left. It’s a lot to come to terms with and you need to keep your options open to get the best results. Good luck !
Caro,
It may well be that you get offered immediate reconstruction. I had both mine reconstructed immediately during the op (I never requested this, they just did itn that way), so from my point of view, i have never actually felt the “loss” of my breasts as they have always been there (albeit firmer after the op). I had my chemo before the op and the rads after. The radiotherapy made the implant go rock hard and I had to have a further surgical procedure in December, but I wouldn’t have changed any aspect of my treatment or my decision for the further ops. My scars are minimal (had LD reconstruction), my figure looks natural and (touch wood) I have come out the other side and have finally started planning for the future again.
Best wishes for your future treatment
Katyx
I’m very sorry that you have been diagnosed with breast cancer. I was diagnosed with BC in Dec 06 at 28. Due to my family history my surgeon offered me similar options to you. I was also uncertain as to whether I had the BRAC gene and had to be tested. At the time Christmas was coming and I wanted to be home with my kids, but also wanted to get the cancer out. So opted for the lumpectomy and had it within 10 days of being diagnosed. I recovered very well from the op then I started Chemo and had RT. In July 07 I had a BRAC test which confirmed that I have the BRAC1 gene. It was’nt a great shock really at 23 I had asked to be tested only to be told that I was to young and it was unlikely that I had the gene, who would’ve thought 5yrs later… Once I got the diagnosis I decided to have the bilateral mastectomy and in Fed 09 had it done with immediate reconstruction. I have no regrets, I recovered very well and my new breasts look really good and have healed well. I’m not going lie to you I have my ups and downs but there are far more ups. I think a decision about treatment is a very personal one and there is no right or wrong decision. I had times after my gene diagnosis where I thought should I have just had the mastectomy but the reality for me was, it just wasn’t right for me then especially with the uncertainty as to whether I had the gene. The decision about which surgery to have was a big for me at that time and I’m glad I got to choose.
Like me you sound like you have a very understanding surgeon who has given you options, not just told you what you need to do. My surgeon wanted me to have the bilateral mastectomy from the start but did not pressure me. He respected my decision and let me know that I could always have the mastectomy after the gene test if I wanted to.
I got diagnosed at time when things were really good. I was a single mother of two 9 and 8 yrs old at the time. I had just started doing an access to computing course and was very happy. For a while during and after treatment I thought I would never get my life back on track and would always feel the way the whole cancer situation made me feel. Try and always remember things will get better I have my final op to replace my expanders with permernant implants in Aug. I’m due to start an access to Social work course in Sep my youngest is starting secondary school and at the moment I’m in a good place, I can see the light at the end of the tunnel. You are at the beginning of your journey and you will to. Just give yourself time allow yourself to have your ups and downs and try not to beat your self up.
Hi caro111
I had a bi-lateral mastectomy in june 2006 no history in family was advise to have a lumpectomy but decided to have larger op,after was told i would of need to have a bi- lateral mastectomy anyway as the cancer was coming in the other breast too, hosp didn,t do reconstruction at same time didn,t have time to wait,have just had first op of becker implants done, which are looking great, pain from mastectomy wasn,t that bad, went into hosp on fri came out mon,it,s a big decision to make, take your time, good luck with whatever you decide
Lornaxxx
Thanks for all of your comments. I saw a geneticist yesterday and, although she wasn’t able to say with much certainty how likely my bc is hereditary (she thought about a 50% chance), she did say that the BRCA genes only account for about 20% of all breast cancers; the other 80% are due to genes they don’t know about yet. So, even if I tested negative for the BRCA genes, I’d still be worrying that it’s due to one of the other unknown genes. Therefore, I’m sticking with my decision to have bilateral mastectomies, as it will provide me with peace of mind. I will consider reconstruction at a later date, once the bc has been dealt with and treated. Surgery’s scheduled for 16th July, after I get back from holiday.
I’m going to be genetically tested but unfortunately the results will take a few months to come back, and I obviously can’t delay treatment until then. I’m really torn about what to do. Part of me thinks; just whip them both off and be done with it, but another part of me just wants to go with the least invasive option. Please tell me what you’d all do in my situation!?!? Oh, and if anyone out there’s had mastectomy can you tell me how bad it was pain/recovery wise.