I had one mastectomy 7 years ago and due to a possible genetic link am thinking of having another (I’m making it sound as though it’s ‘on offer’ !!)
Just would appreciate anyone’s thoughts about living breast free and I am tempted not to have reconstruction, but I am not totally sure of my reasoning?
I seem to be almost stalking you round the forum!! Loved the title of this thread - sums up my thoughts.
Just to say I am waiting for 2nd mx within the next month or so. I had mx and full anc 4 yrs ago and all is fine with that. I didn’t have recon. Gradually, I have decided to ask if they will do other side to balance me up as I believe my posture is suffering because of the lopsided-ness (is that a word??) and my bone mets in spine aren’t helped either. Finally got round to seeing surgeon to ask and he said he would do it as I seemed stable. My case was discussed at MDT recently and I went back to surgeon on Monday and the medical team have agreed and can see my logic. Waiting list is full til March but I’m on list to fill any cancellation. Can’t wait !!!
If you want I’ll let you know how I get on.
Liz
Being lopsided after my unreconstructed Mx does annoy me, but not enough to drive me back to elective surgery. Without belittling the psychological issues of other people for whom breasts are an important part of femininity etc, I personally make a big distinction between surgery for cancer or function, and surgery for appearance, in view of the risks. Balancing up of the one over-heavy boob to prevent a twisted back is a good example of what I would describe “for function”.
However, if I ever got even a spot of DCIS or a suspicious cyst the other side, I know I would not be fussing around with WLE or reductive chemo, I would ask for second Mx at the earliest opportunity.
Hi, I have had both breasts removed…the first one due to cancer and the second one (elective) about 6 months after (although I had to fight to get it done, after being told I would have to wait 3 years). I wanted the other one removed mainly to even me up and had no interest in reconstruction. I’ve been boobless for nearly 8 years now (I’m 47 next month) and while it has it’s limitations (eg I don’t wear sleeveless tops or swimming costumes) and I don’t like looking at myself naked, I’m glad I had it done. Amanda x
Hi had mastecyomy for breast cancer 5 years ago and a second one 18 months later. Best thing I ever did, no lobsidedness, choice of size!!Have been offered reconstruction by my surgeon many times but not interested.Have to say i was large breasted, dont miss them at all. Good luck x
Hi everyone
Thanks for your replies, your comment made me smile Liz yes I would appreciated you letting me know how you go on.
I have an unknow variant of ‘unknown significance’ in the Braca 2 strand, my cousin (same diagnoses) has just had her bloods taken to see if she carries this same gene, then it will be sent to the Wessex labs to check it further. If that result comes back positive then I will have to think about the surgery.
The first time I didnt hesitate, and I have never felt the need strongly enough to have recon, and that is what I am pondering now. My OH has never acknowledged the loss of my breast in nearly 7 years and he doesnt seem to want to be involved with this decision either, so thats why I was asking your thoughts girls.
Thank you
Debbie x
I’m 4 months post-radical Mx with a not-brilliant prognosis.
I went for my 3-monthly check-up with the surgeon-dude (aka Bloke in a Posh Suit) today. He is very happy with the condition of both my one large boob and my flat scar.
He has agreed to perform risk-reducing surgery (when I’ve finished Herceptin) on my remaining boob to balance me out (I’m banned from a recon for at least 2-3 years) and to prevent any new cancers.
It won’t affect my current prognosis but it would stop any new mischief and I’ll only have one knackered arm instead of (potentially) two.
He said that it would be the Point of No Return as a double recon rarely works out.
But I’d rather have no boobs than one big lopsided one; and I can have smaller prostheses which would be easier to manage.
Big step. Deep breaths…
I’ve been given a date of 15 March for my mx. Was hoping for a lot sooner but have to go to local hospital where there is an ICU etc because a pre-op check revealed high blood pressure. Surgeon only has an operating slot there every 2nd Thurs. It’s very frustrating having to wait but hey-ho, there may be a cancellation I can take…
Ninja - that’s the conclusion I came to, balanced up, reduced risk of nasties on other side and in other arm plus helping my spine and posture.
Liz
Liz, indeed.
My mother developed scoliosis of the spine - it looked like an ‘S’ from the back - so symmetry can only help me. The boob they removed was about 1.3Kg so I’m fairly unbalanced right now.
Hi,
hello people, I’m due to have my first mx in 2 weeks time and going to have 2nd not long after (I hope) I had thought (quite stupidly!) that most women just had recons until I’ve discovered this thread just now - you all seem to manage without boobs. mine are quite large 34E and was looking forward to having smaller ones recon’d but I’m not sure I can live with scars all over my back or tummy - sorry just sounding off really as I havent made any clear decisions as yet. Any advice would be appreciated. Jo x
Hi there…I’ve had 3 mastectomies! I opted for a reconstruction at the same time as my first one. But cancer retutned in scar tissue three years later so it was removed. While the recon made me look absolutely normal when dressed, it was uncomfortable…like I had a bag of rocks in my front pocket. I was embarassed in any occasion where I was pushed up next to someone else. After this was removed, I had a prothesis (very expensive, as were the bras). This was more comfortable and easy to live with than the recon.
My cancer returned in my other armpit so I decided that my remaining breast could be removed with the lymph nodes (couldn’t find the primary on that side).
I am very flat chested now (was a 34C) but comfortable. I don’t have a partner so nobody else involved with my body and it’s missing parts.
Wish I hadn’t bothered with the first reconstruction, they used my back muscle to flesh out the implant so now I’m left with scars front and back.
2011 the cancer returned in the scar tissue of the first breast so inoperable now…nothing left to remove.
But Xeloda (capecitabine) has reduced the tumours to almpst nothing…very pleased about that.
Good luck to you…hope this is your final encounter with BC.
I’m booked to have my mx and anc in 2 weeks and a friend suggested having the other breast removed at the same time. The more I think about it, the more it makes sense from an ease and balance point of view - I already have a slight scoliosis and would not want to make it worse. As it’s Friday, I haven’t discussed it with BCN or surgeon but do they remove 2 at the same time when one is OK?
Hello ladies-hope you don’t mind me joining you. I had double mx in September last year and am getting used to being flat. I have small prostheses which are very light and do agree about the symmetry thing-it’s easier being completely flat I think. I decided not to have recon although I was offered it as I just wanted the cancer gone and to reduce my risk of another primary. I have never regretted my decision and have adjusted now to life without boobs!
Rachel x
Rachel - I have only just thought about having a double mx and haven’t yet spoken with BCN or consultant so don’t know if they’ll do one, but I’d like to find out a bit more, such as how do you cope post-surgery? I presume you cannot use either arm so can you eat, etc and what about basics such as wiping your bum? If I am ‘allowed’ to have a double, would it be better to do it one go or 2? My reason for wanting a double is to a) reduce chances of cancer appearing in other breast (first tumour was already about 15cm and spread into lymph nodes) and b) for ease of life ie not being lop-sided.
Have finished chemo and surgery is on 9th March. Some days I feel as if I’ve just had enough of the whole thing but I draw on the positive comments made by people on the forums.
Saskia
Hi Saskia-I was only in hospital for 3 days after my op and was able to do everything straightaway. Just kept taking good pain relief! It was much easier once the drains came out after about a week but I was never stuck in bed at all and could do everything except lift things (which you’re not allowed to do anyway) I went on holiday to Vienna 3 weeks after my op and was back at work after 4 weeks. I have never looked back and it was (and still is) a massive relief to think that I have lessened my chances of recurrence. I did have to see a psychologist before my surgeon would agree to the op, and that’s why I only had lumpectomy to start with (last March) and then had double mx after chemo. Good luck with whatever you decide xxxx
Well fingers, toes and everything else crossed, I am booked in for my second mx for this coming Thurs 1st March. Excited! Have to go to hospital on Weds teatime but need to ring before I set off to check bed will still be available for me…not holding my breath!!
Rachel - I am delighted to hear you went on hols so soon after. I asked my surgeon how soon after op I would be able to fly so I can start getting some trips in and he said about a month. I retired v early due to the cancer so at least work isn’t an issue for me.
I can’t wait to be balanced up and am sure it will be both physically and mentally beneficial.
Liz
Good luck Liz xxx
Rachel - sounds positive and OH says he’ll do EVERYTHING for me if necessary. Shall speak with BCN tomorrow to see what the next step is.
Saskia
One small step in the right direction - I have an appointment with my surgeon to see if I can convince him that I am sane in wanting a double mx. They do not want to get a reputation for lopping off healthy tissue - normally I would be with them on that but circumstances do change the way you see things.
Liz - all the best for Thursday. Hopefully it will be me on Friday week.
Saskia
Saskia - thank you but heard today my op has been cancelled. Our NHS trust is in a big mess here, particularly for A&E, and they’ve just decided to cancel all routine ops for at least the next 2 weeks to reinforce A&E staffing and backlogs with no guidelines as to when they can be rescheduled. I’m gutted as this is the second cancellation in as many weeks having got my hopes up. Apparently the surgeon was very upset when he got an email about it today…
Good luck in convincing your surgeon to go for a double mx. Just emphasise the mental as well as the physical benefit you think it will give you. I originally wanted a double mx but they would only do one at the time because of my spread, poor prognosis, the amount of chemo I’d had and then see how I recovered. I like to think I’ve coped well enough to pass the ‘test’ now!!!
Let us know how you get on.
Liz