Hi there ... 

So sorry you've had to join our little chat place... your most welcome.. and your def not alone , there's been lots of new breast ladies latly ...

I had a grade three breast cancer and masectomy  in July 2017 .... l was also debating weather to have a double masectomy.. but just had a total right masectomy... but I'm quite o.k with it all .. 

I'm not sure but have heard some say they had to fight their oncology team... others were given it ... so think it's depending how your team think .. maybe write down for and against... and once your sure what you want, give them a ring and ask what their take of it is ... 

Well any time you want a chat or vent or want to know anything , someone here will be able to help ..

Chrissie xx

Hi Chrissie 

Thank you I guess I'm just panicking about it all. Its nice to speak to you as you have gone through the same thing.  

How did you cope with going through the op. I'm feeling very nervous and have been suffering with anxiety quite bad the breast cancer nurse said this is normal.

I guess I'm just worried about getting it in the other breast too.

Lynette xx

[@Jolamine]‍ managed to persuade her consultant to do a double mastectomy, I've tagged her and she usully responds very quickly. Getting her take on this might help you. 

Hi there ..

Like you I was so scared ... locked myself away for two days solid,  crying / yell and cussing cancer .. but it really did me good , felt ready for the fight after .. then I came on here and @jolomine took me under her wing .. she's our guardian angel .. and like @Rilleyroo we were here the same time .. ... helped  each other through ..that was 2018 . Pad playing up , will get back when sorted  xx

HI Lionetty,

Welcome to the forum, although I'm sorry to hear the reason you joined. I have had 2 bouts of breast cancer 9 and 10 years ago respectively. I had a lumpectomy first time around followed by Tamoxifen for 1 year. At 6 months post-surgery, I also developed a large lump in my other breast - fortunately this was benign. Almost a year to the day after my first surgery, I discovered another lump in the same breast.

When my surgeon informed me that it was back again, we discussed the possibility of having a double mastectomy. As soon as I suggested this, he was in full agreement. I was possibly lucky, as many people on this site report that their surgeons were reluctant to remove a good breast. I had my double mastectomy and was then on Letrozole for 6 years. I finished taking this in July 2017.

Don't be afraid to discuss the possibility of a double mastectomy with your surgeon. He should be able to tell you whether or not this is the right procedure for you.

Your cancer nurse is correct, most of us feel very emotional, nervous and anxious until we know exactly what we are dealing with. Fortunately our emotions usually settle down once we know more and start down the treatment route.

Kind regards,

Jolamine xx

I think it's up to your surgeon and health I spok3 to someone at hospital they had to hav3 a breast off and opted to get other off and her surgeon agreed ask your surgeon good luck best  reply would be from your surgeon hope this helps Lorraine xx

Hi Lynette,

i was diagnosed in September and did everything I could to persuade my surgeon to give me a double mastectomy - so much so that my daughter was cringing with embarrassment and told me to give up the fight. My surgeon said he agreed with all my arguments but protocol did not allow him to remove a healthy breast. 

Consequently I had a mastectomy and sentinel node biopsy on Oct 4th. On the 17th I had a meeting to get the results of the pathology and biopsy which showed cancer in one of the sentinel nodes and I have to have lymph node surgery on November 8th. I even tried again to persuade him to lop the other one off then but to no avail!

I didn't want the double mastectomy from fear of the cancer recurring, it was rather an issue of my age, having fat necrosis in the other one, being lopsided and the inconvenience of wearing a prosthesis.  He did say that if I still felt the same way in a few months time, he would refer me for a psychological assessment to see if I would really be able to cope with that. I'm nearly 73, have no further use for a single breast and am recovering quite well from the surgery, but probably won't want to go through another operation after having two in close succession.  I still wish he had done both at the same time. 

Good luck with trying, it seems that every surgeon is king of their own castle and yours may have a different opinion on the matter.

Christine

Hi Jolamine

I know I'm rather late to this chat but have come on since my cancer has returned after only 7 months after my mastectomy. At the initial diagnosis in Feb 2019 I asked for a bi-lateral mastectomy but was declined. The cancer has returned in the chest wall of the original breast and I again asked for my left breast to be removed but I was declined again. I feel completely deprived of having any choice with regards to how I look and what my 'new normal' is. 

Like you, I have been on hormone therapy for over a year and even had my ovaries removed as a risk reducing exercise as I wasn't menopausal when I was diagnosed and yet it still came back! 

I had surgery two weeks ago to remove the tumour and am awaiting discussion with oncology regarding adjuvant chemotherapy.

I think I'd have the backing of the pysch team but the barrier is the consultant and the CCG! 

xx

Hi Pinkpony,

Welcome to our forum. I am so sorry to hear that you are now battling a second bout of breast cancer. Have you been told what grades and types of cancer you have? I had something similar ten years ago. I was first diagnosed with grade 1 Pure Mucinous breast cancer 11 years ago. I had a lumpectomy followed by Tamoxifen. When I discovered a second lump in the other breast 6 months later, my surgeon suspected that it was cancerous, but I was fortunate that my biopsy showed it to be a benign lump.

Almost a year to the day of my lumpectomy, I discovered another lump in the original breast.This time I wasn't so lucky and I was diagnosed with another grade 1 primary Pure Mucinous cancer. I was told that I needed a mastectomy, but I asked my surgeon if he thought that it might be worth having a bilateral mastectomy. Fortunately, he agreed with me and never threw up any opposition whatsoever.

I was given no phychological assessment at all, but went ahead with the surgery and, have never looked back.

I can appreciate how you would rather have had the double carried out ast the same time. Most surgeons are very reluctant to remove a good breast, as they claim that removing both breasts diesn't prolong life significantly. Have you had your pathology results yet, after your last operation?  Give yourself a few months to see how you feel with your single mastectomy, but if you are still unhappy, have another discussion with your surgeon. You may need to be very determined to have the second breast removed. It is still worth doing it if you remain keen to have the double.

I hope that you are healing well after your recent surgery. It sounds as if your surgeon might be willing to concede, when s/he is talking about referring you to a psych to discuss this.

I do hope that you can get your treatment over with as soon as possible and can decide upon what to do about the other breast. I agree that it is so frustrating when your care team don't listen to your requests and you feel that you have no control over the situation.

Do please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

I have Grade II invasive ductal breast cancer; tumour 61mm; NPI 6.22; Oncotype score 21; 5 lymph nodes involved.

My recurrence was in the chest wall Grade II 18mm mixed lobular ductal for which they did manage to get clear margins to the implant cavity.

My treatment began with a lumpectomy March 19, no clear margin and 1-3 sentinel node involvement. Mastectomy in June, at wich point I'd asked for a bi-lateral procedure and was declined. I declined chemotherapy based on my oncotype but at the point of the test didn't realise I had additional node involvement OR the final size of the tumour. I didn't get clear margins after my mastectome in June last year. I'd been on tamoxifen since April 19, switched to zoladex injections to induce menopause and went on to Anastrrazole. Had my ovaries removed Feb 19 and remained on Anastrazole. 

I noticed the lump in May and within a month I'm back in for surgery. Once again, my request to remove my left breast was declined. I'm completely asymmetrical. I never wanted an implant but was on the waiting list for a diep tummy flap which I'm now told won't happen because I'm considered high risk. They replaced my implant and did a perforated flap procedure to fill the gap where the tumour was and I admit it has given me a better shape but I want to FEEL the same both sides as well as look. I really feel I haven't been listened to and whilst I appreciate that there is no evidence to suggest that removing healthy tissue reduces risk I'm a young at heart 54 year old who is'nt ready to to live in post surgery bra's and baggy tops for the rest of her life. I haven't worn a normal bra in 18 months now and have had to put them all away as I can't bear opening the drawer and evening looking at them any more!!!!! 

That feels like an essay so sorry for going on!!!! 

xxxx