I have just been back to the breast clinic to be scanned using ultrasound after my mri scan.
I have had lobular cancer confirmed in the left breast and the mri has shown another patch in the left and a large lump in the right.
The radiologist was trying to find these on the scan and decided that doing any more biopsys when she wasn’t sure she would hit the right spot was pointless.
She contacted my consultant and my husband and myself have decided that double mastectomy is probably the safest route!!
Has anyone out there been through something similar would love to hear from you .Was first on June 12th.
Hi Angie
I was diagnosed with invasive lobular cancer in left breast in February (with lymph node involvement). I had an MRI to check the right breast and this was clear.
However, I have just had a double mastectomy. This was because initially I couldn’t feel anything in the left breast and then suddenly I had this huge thickening (6cm) that seemed to come from nowhere and I couldn’t bear to go through the same with the right breast. I was too young to be part of the mammogram programme but as you probably know its difficult to detect with them anyway.
I talked through with my husband a great deal. I know of people who haven’t been able to have double mastectomies in similar situations to mine (no cancer in other breast) so I did make a strong case. I was told by the breast care nurse that I would probably need to have a psychological assessment first but after an indepth discussion with the consultant who talked about both sides of the argument, he decided to agree to my wishes without problem.
I am relieved to have had a double mastectomy as I think I just would have kept worrying. It’s probably worth having the discussion with your consultant as well and also your breast care nurse.
Good luck with your decision
Elinda x
I had a double mastectomy with immediate reconstruction with implants after being diagnosed with ductal cancer in the right breast with some additional DCIS. Originally i had a lumpectomy but didn’t get clear margins and then when they went in a second time they couldn’t be sure they got all the DCIS so recommended a mastectomy which is what i wanted at the start! Anyway, following an MRI I had a fibroadenoma in the left breast. Waiting to find out if it was another tumour was horrible and I know the drs could see it was a very stressful experience for me. This combined with my young age (32) and dense breast tissue was enough for them to agree to the double mastectomy. I have to say, for me, it was the best choice and I have never regreted it.
I didn’t say but I haven’t had immediate reconstruction as I have to have radiotherapy. Reconstruction at a later date is a long operation when you’re looking at making two breasts. I’m not sure I’m going to go down that route. I’ll see how I get on with the bra filler things.
Elinda x
I find out the diagnosis on Wednesday having already been told that I have BC in my left breast. I desperately want to have a double mastectomy even if my right breast is given the all clear. I have been forewarned that they may refuse to do this as ethically they can refuse to operate on a good breast. Does anyone have any advice as to how I can put my forward my point on Wednesday so that the consultant agrees with what I want.
I have 2 friends who had lumpectomys when they were first diagnosed with breast cancer only to find out 4 & 14 years later that the cancer had returned in their other breasts.
On the other hand i would be very grateful if anyone have opposing points of view on having unnecessary surgery on a healthy boob. I’m in no mans land at the moment and very confused. They have pencilled me in for surgery on the 29th July or the 14th August depending on what surgery I need.
Hi Stella
You don’t say what diagnosis you found out? Do you mean lobular cancer?
I was told by the BCC helpline to talk to the breast cancer nurse first. I did this and she actually paved the way with the consultant. She was a bit anti at first so I told her what I wanted and that I was worried about appearing pushy and didn’t know how to talk to the consultant - this got her on side.
I made a very clear and rational argument to the consultant. My personal circumstances were taht it had been impossible to feel anything until the tumour was large and as such I was worried about the same happening the other side. I also said to him that he wasn’t going to offer me yearly MRIs and he said no they would probably be two yearly.
I do think though it’s important to have the full conversation with the consultant as he/she will tell you what the risks are. I was told in no uncertain terms that the risk is with the breast with the tumour. He talked to me for quite a while to make sure I understood all aspects of this. Even when he’d booked me in for a double mastectomy he said I could change my mind - even on the day!
The other thing to think about is the reconstruction process. Doing two breasts is obviously more difficult than one as you have to find the fat and muscle from somewhere. It would also be a very long operation. This is why I’m not sure if I want to go down that route.
It is all very difficult. I would certainly tell the consultant what your fears are and about your friends. I found it helpful talking things through with a nurse on the BCC helpline first.
Good luck
elinda x
Hi Stella
I was diagnosed with DCIS in my left breast in 2004 and just had a WLE with clear margines, no chemo, no rads. Then in Jan 2008 I was diagnosed with triple negative BC with lymph node involvement in my right breast. I opted for chemo (TAC) first then surgery, then rads. I had no difficulty in having a bi-lateral mastectomy with axillary clearance on the right side. I said that I did not want to be lopsided. Now I can choose whether to wear my prothesis or not. It is surprising how many clothes you can wear and not have to worry about being flat chested. Or, I can wear tight fitting and lowish cut clothes with my ‘boobs’ in place, they are really good and very comfortable even jiggle the way real ones do. I am not sure how old you are, and if you are a young woman you may feel differently to me, I was 61 at the time and to me it was the only sensible decision to make, I just didn’t want to go on worrying about BC appearing in my other breast.
I do hope this helps you make your decision, it is a really horrible time but there is a lot of help and advice out there while you are on your journey.
Love and best wishes
Nonny
hi there, I had grade 3 invasive with 1/4 nodes involved, i have had a mx on left side but i have now decided i want the other one removed when i go for reconstruction. As far as i know it is healthy but i dont want to ever have to go through this again when we can prevent it by removing it now. I am having the full works at moment, chemo with rads,etc to follow. I wish someone had given me time to come to this decission when i had my MX in april. I havn’t spoke to my BCN about this yet but i am expecting o have to put up a fight for what i want. Be interesting if anyone has been through the same.
Luv pauline xxx
Hi, I had invasive lobular in my left breast and invasive ductal in my right - so I wasnt given a choice, I had a bi-lateral mastectomy nearly a year ago, and am pleased that I did. I have just been for my yearly check up and was asked if I wanted reconstruction (couldnt do it then as didnt know what treatment I was going to have), theres no way I want to go back into hospital voluntarily so said NO thanks. I dont wear prothesis and just changed the way I clothes shop. If I was given a choice I would still have had a bi-lateral, I just want to do what ever to stop it coming back and have no regrets at all. I hope all goes well with you,
Shirley
Hi there,
I was diagnosed in dec last year, and with my husband decided to ask for a double mastectomy although the cancer was only in the right breast and one lymph node in that axilla. No other cancer was found after having the op. I’m only 35, and my sister died of breast cancer in her late 30’s (17 years ago though) so whether that helped our case but never got any psychological assessment etc. I didn’t think I could deal with constantly checking the left breast, and although the scars are big (I was an E cup), I feel better being symmetrical… I also have 3 kids under 6, so don’t want to get caught up by this again.
I don’t know about reconstruction - 18 months or so away they said as only just finished chemo with some radio to go - and was told would have scars on top of breast although would be covered by bra line. I do wear protheses, but very much can suit my mood - too tired with chemo this week to care but as still have a belly, they do balance me out! Got a C cup, and most pleased except at times with not being able to wear lower cut stuff, and wearing vests in the recent hot weather was just too hot. Told I can get stick on ones a year after radio, so prob will try them.
Anyway, hope this helps and if you’d like anymore info, just let me know. xx
Hi - although I was dx in April this year I have not yet posted on this site but have frequently visited the site to read the threads. I opted for a double mastectomy with immediate reconstruction in April after being told I had a grade 3 tumour in my left breast. My mum died of breast cancer 20 years ago and so basically I did not want to worry about cancer returning in the other breast. I had also had a small tumour in 1994 although this was not related to my recent tumour. From a cosmetic point of view my old breasts were quite large and I knew that the chances of my new left breast matching my old droopy right breast would be minimal and that surgery would be needed on the right side after the left had been reconstructed. To cut a long story short I had the double mastectomy with immediate LD reconstruction on the left side with a tear drop (half saline/half silicone implant) and a life preserving mastectomy on the right again using the tear drop implant but obviously my old skin. I am currently undergoing CMF chemo so am having to wait for the nipple reconstruction. Overall I am very satisfied with the result of the reconstruction - in fact under clothes they look better than my old ones. I am now back to running and walk 5 miles each day so the op has not held me back. With regard to the psychological impact, I experienced no regret at the loss of both breasts but again I think that is down to the fact that I have two new breasts and a cleavage! Throughout the whole process I was not swayed in my decision by anyone - in fact the breast care team supported this decision.
Vicky
Hi all
I was triple negative and opted for chemo first, not only to mop up any nasties that might be floating around, but also to give me time to think about a double mestectomy. I made it clear to the Doctor that gave me my diagnosis and discussed treatment with me that that was what I was thinking about. There was never any argument about whether I could have this or no. I started 6 lots of TAC chemo at three weekly intervals whithin two weeks of diagnosis and after the second dose the large tumour (6.5cm x 4.5cm) in my right breast had disappeared, they could not find it on ultrasound so my oncologist knew the chemo was working. The funy thing was though, after surgery when they looked at my lympth nodes (5 out of 19 affected) the cancer was still live there. The oncologist could not explain why the chemo had killed the the cancer in the tumour and not those in the lympth nodes. Surgery was follwed by rads to mop up any strays.
Just more food for thought. Makes you wonder what to do for the best doesn’t it?
love to all
Nonny
Hi Angie and Stella
I’m 36, was diagnosed with bc last month and am having a bilateral mastectomy tomorrow (yikes!!!). The lump is in my left breast and I had an MRI which showed the right breast clear. However, my mother died of bc at 41, which is why I’m opting for a bilateral. I really couldn’t face the thought of going through all this again if the cancer were to return. HOWEVER, unless there is a history of bc in your family you MAY want to reconsider having potentially uneccessary surgery. The chances of developing bc in your other breast are the same as for any woman of developing bc (more or less). If there were no family history of bc in my family, I definitely wouldn’t be having the healthy breast removed. I worry that many women are so terrified (rightly so) by this awful disease that they make irrational decision based on fear. Please speak to your consultant thoroughly about this and ask him/her what the chances are of developing bc in your healthy breast before making any final decisions.
This is a very personal decision to make, and I wish you all the luck in making it.
Best wishes,
Caro xx
Good luck with your op, Caro - we’ll all be thinking of you.
Hello
I think far too many women rush into preventive surgery and their surgeons should be putting the brakes on and dealing with the disease first and then seeing what GOOD monitoring can take place afterwards locally, or if family history then also locally but annually at the Marsden.
Don’t be rushed into life changing decisions, your chances of a contra lateral BC are porbably quite low even with family history. Gp in with your eyes wide open, speak to others who have done it and regretted it. It’s a bit like recon, you only hear the happy campers and there are very many unhappy ones out there but they never want to be seen to be negative as there is too much pressure to be put a positive spin on everything.
DANGER, slow down …
Dahlia, I see your point but that’s precisely why it’s so important to have a full discussion with the Consultant (mine was actually with both the surgeon and the oncologist). I was told by the breast care nurse that risk reducing mastectomies were never routinely done at the hospital I attend.
Personally I’m glad that this is a decision that seems to be made on an individual basis taking into account a range of factors rather than setting blanket decisions.
Elinda x
Dahlia, just have to point out, your chances of a contra lateral bc with a family history can be as much as 80-90% (depending on the gene involved). I don’t think that is quite low.
PS. Thanks SusanneA for your best wishes! x
Caro
It IS an individual thing, to SOME extent, but my chances of getting BC were about 80-85%. Once I was diagnosed and the diseased breast had been removed there was AT MOST a 50% of a contra lateral cancer and that’s with the stronger mutation and history with ovarian and breast cancer.
I think it’s important that if people are going for the amputation that they have the facts spelled out whether they have familty history or not and it behoves the medical profession to ensure that ladies take this decision seriously and slowly because it cannot be reversed, ever.
Some hospital services are poor (or non existent) wrt counselling if you have no family history and do not come under the Genetics “heading” and some surgeons are not sufficiently cautious enough or caring enough to take the time to go over and over this with women. At the very least women should ask for and surgeons should recommend a second opinion as it will usually put a different perspective on things and sometimes we need that no matter how well informed we might think we are.
Also, if the decision to have the preventive surgery is taken I think a second opinion equally valid for reconstructive surgery. You only need to read Lainey32’s story to see that even undiseased, healthy breasts being removed can be a personal catastrophe and whilst she may be seriously unlucky with her surgeon she is not at all uncommon.
I believe that if the screening services in the UK were more accessible and reliable then fewer women would feel that they have to take such radical decisions.
Caro
I should also say good luck as your decision seems to be well and truly taken, notwithstanding you can change your mind even after signing the consent form - always a good reason not to have a pre-med.
I hope things go well for you and that your surgeon treats you with the duty of care that you deserve.
D