Hello everyone, Since seeing my surgeon again last Wednesday and listening to what he had to say about a bilateral mastectomy and immediate reconstruction, I'm once again at odds with myself on what to do. I'm still on an emotional roller coaster, one minute feeling comfortable with my decision to have both breasts off and then the next, feeling scared and anxious. Should I really put myself through this? My surgeon, Michael Henderson, said that I will be going through a 'big' op with just the one breast done but both breasts would make the op 'humongous' and I will feel like I've been run over by a steam roller which came back twice more to make sure the job was done. I guess he was just letting me know what I would be in for but this has given me the heeby jeebies thinking about it. My hubby and I went for a long walk in the lovely Fitzroy Gardens in Melbourne opposite the hospital after we spoke to Michael and I became quite emotional. How in the hell do you make a decision like this? Oh I really don't know! The thing that worries me about not having the other breast off is my emotional well being. Will I worry everyday that I will get this blasted BC in the other breast? Yes I think I will. In putting my thoughts down here, I don't expect anyone to 'tell' me what to do. I just wanted to out in words how I'm feeling in the hope it would help me clarify my feelings in my own mind. Thanks for 'listening' my sisters. BTW I put up a new profile pic with my wonderful husband Ian. It's one of my favourite pics and reminds me of better times :) Love Janey xx

What a great new profile pic of you and your husband. He is obviously a rock in the storm for you. (I am also lucky to have the same from my husband.) This is positively the worst time for you, making decisions and trusting that they are the right ones. Perhaps if you asked yourself what you would regret most NOT being allowed to have..? Like Viv (above) it would be harder not to have the choice in the first place. I would rather regret what I had done, rather than what I hadn't had done - if that makes sense. Whatever you choose, in a few months it will all be behind you. Thinking of you, and knowing you will make the decision that is right for you. Big hug. Love, Michelle xxx

Hi IJaney235, When I was diagnosed by ultrasound not mammogram (I have such dense fibourous tissue that Mammogram is not for me). I had a 10mm lump that no one could feel, not even the surgeon. This lump was not there 6 months prior, I was just having fatty tissue looked at. My initial reaction was I want them off. Biopsy was unconclusive, surgeon telling me it may not be cancer!. Lumpectomy on 30/04/2013. IDC with tumor twice as big as expected, Stage 2, Grade 2 ER+ PR+ and HER2 neg, clear margin and clear nodes. My surgeon has done a wonderful job, no deformity at all. No Chemo, have just finished 6 weeks rads. As ER+ Oncologist has recommened I have ovaries removed, my gp suggested I have hysterectomy as at 49 have no longer any use. Yep Oncologist agreed as has my gyno so I am having total hysterectomy with ooperectomy in October. What a relief to get rid of anything that cancer may grow in. Unfortunately I have a lot of family member with cancer - here we go= My mum, bowel cancer, my sister bowel cancer at 45, Uncle bowel cancer, his two daugherts, my first cousins 1 lung cancer and the other breast cancer at 45. So that makes all four grandaughters having cancer. :( When I first met with my surgeon I said "I want both them off", he said we dont do that, based on all information given I trusted him (I still cannot say that he hasn't done what is right, but was it right for me). On my last radiation, the breast care nurse and I had a chat, I mentioned my next op and said it will be a relief to have everything out, I just wish that I had been able to have double masectomy, to which she replied "it's your body your choce", so I am now a total nut case, I have always wanted them off but was never given the choice. I am seeing my oncologist in another week so am going in armed with all information to get the reassurance I need. No one put me in touch with the local Breast care nurse until I was about to start radiation , so I didn't get all the information that I should have gotton. The BCNA books are fantastic, get your copy and read. I am angry that I was never given any other option. Talk to as many as possible, but go with your gut feeling. I hate the emotional rollercoaster that BC puts us on. Wishing you all the best VivW

Thanks for sharing your story. At Peter Mac here in Melbourne, I have been fully informed and given choices about which path I want to take. I can't imagine how angry you must be about not having that. I was just discussing it all again with my husband and he said, knowing me, I'd worry and regret not having both off so I think my decision is made now. All that is left to do is for both of us to see the counsellors and to get the second opinion that my Surgeon wants me to do. Although he doesn't exactly encourage having a healthy breast removed, he did say he'd support my decision once he knew I had made it with all the facts and info taken into account. I've also got a fair bit of cancer in my family history although not all is close family. Mother with bowel cancer, uncle bowel cancer, aunty breast cancer (all survivors). Then my grandfather's siblings, my great aunts with breast and ovarian cancers, great uncles with prostate cancer. My Oncologist and my Surgeon have agreed that I haven't any close family members with breast cancer to warrant further investigation for one of the BRCAT gene mutations. My aunty being in her late 70s when she was diagnosed is considered not relevant. Like you, I can only trust their opinions. Thanks again for your support. Good luck with your upcoming surgeries. Sending you hugs and good vibes. Love Janey xx

Thanks Janey, Unfortunately I am in rural Victoria, I do think that I had a good surgeon but had to do it his way. My Radiologist Oncologist made a random statement that he will be very surpised if I am back within 10 years?? But hey, I'm only 49. I am pleased that you have made your personal decision, we cannot base our decision on statistics because they are based on 5 year survival. Once again I am only 49. Should my cancer return in either breast, I know what I will be doing. Look forward to your operation and say goodbye to 2013. 2014 hello new boobies ... VivW

I'm so confused now! | BCNA Online Network

13 Replies

Janey235
Member
12 years ago
You're right about the psychological warfare with our minds. I have gone through the ringer with this decision making. I guess all we can do is be guided by our medical team and our gut feelings. I've now made my decision to go ahead with the double. I really believe I would worry all the time about BC in my right breast so I think the payoff is to bear the big op and the pain of recovery but know that I will have a minimal chance of a recurrence. I am aware that there are still risks but I think I could get on with my life better knowing that I have done all I can to prevent it from coming back again and if it does (heaven forbid) I can't beat myself up for not doing this now. My husband and I will attend some counselling that my surgeon has insisted on and also I'm having a second opinion next week which is also what my surgeon wants but I think it's all systems go now. I'll be thinking of you Friday week for your op and I hope it all goes well and you recover quickly. Keep in touch. Love Janey xxx
Fleur_A
Member
12 years ago
Hi janey, It really is a difficult decision for you to make but in all honesty follow your heart and trust your own judgement. I say the hardest thing to deal with with bc is the psychological warfare, my mind drives me crazy sometimes. As I have inflammatory breast cancer I had to have chemo first, then I have my mastectomy Friday week followed by radiation, then next year with my reconstruction I will have my left breast off and reconstructed. I have spoken to my surgeon numerous times about having my other breast off now but she has advised deal with the cancer first and good breast second. She has said having the two at the same time is massive but if this was my only chance I would just do it and deal with the pain. Feeling like a trucks rolled over me and then backed up would hard but knowing it had moved to the other side would be worse. Good luck with your decision. Fleur xxx
Janey235
Member
12 years ago
I do appreciate your reply. We are vulnerable to our own thoughts aren't we and I for one don't want to spend the rest of my life worrying about my right breast. I'll still need to have the counselling and wait for the second opinion to come through. So just a bit more time to mull it all over. But I think in my heart and mind my decision has been made. Talking about it with my family and here on this site has really helped so thanks again Chris for sharing your story. Much love Janey xx
VivW
Member
12 years ago
Hi Chris, this is great to hear that you do not regret your decision, and peace of mind is the big one. I should also mention that my biopsy came back no DCIS but unconclusive, the ultrasound was the only indication of cancer. This is why a lumpectomy was chosen for me. I still want them both off.

Viv
Chris
Member
12 years ago
Hi Janey, 2 years ago I made the decision to have a prophylactic mastectomy at the time of reconstruction with tissue expanders and then implants. Like Viv, my cancer was diagnosed by ultrasound after 2 clear mammograms 3 months apart. Even the doctors couldn't feel the 4mm tumour. Pathology showed a 21mm grade 3 invasive ductal cancer. My surgeon always said he would happily take off the other breast if I wanted, as even he was concerned that we might never be sure that there wasn't something else lurking there. Anyway an MRI showed nothing more, so due to it being Christmas, and a huge decision, I just had a single mastectomy following the lumpectomy, and went and did chemo and gave my body time to heal. 9 months later I chose to have the other one off at the time of reconstruction. A final check up before the surgery with a mammogram and ultrasound again showed a clear mammo with a highly suspicious lump on ultrasound. I was devastated and had to wait again for core biopsy results. Luckily this time the results showed nothing cancerous, but for me it was a clear sign that I was doing the right thing. I have never ever regretted this decision. It has given me peace of mind. This is a huge decision, and for me, making it was the hardest part. Once I had decided, it became easier. I knew, that I would be really annoyed with myself if I got cancer in the other breast and could have avoided it. We are all different, and only you can know what the best thing for you will be. Good luck with your decision making. Love Chris xx
Chris
Member
12 years ago
Hi Janey, 2 years ago I made the decision to have a prophylactic mastectomy at the time of reconstruction with tissue expanders and then implants. Like Viv, my cancer was diagnosed by ultrasound after 2 clear mammograms 3 months apart. Even the doctors couldn't feel the 4mm tumour. Pathology showed a 21mm grade 3 invasive ductal cancer. My surgeon always said he would happily take off the other breast if I wanted, as even he was concerned that we might never be sure that there wasn't something else lurking there. Anyway an MRI showed nothing more, so due to it being Christmas, and a huge decision, I just had a single mastectomy following the lumpectomy, and went and did chemo and gave my body time to heal. 9 months later I chose to have the other one off at the time of reconstruction. A final check up before the surgery with a mammogram and ultrasound again showed a clear mammo with a highly suspicious lump on ultrasound. I was devastated and had to wait again for core biopsy results. Luckily this time the results showed nothing cancerous, but for me it was a clear sign that I was doing the right thing. I have never ever regretted this decision. It has given me peace of mind. This is a huge decision, and for me, making it was the hardest part. Once I had decided, it became easier. I knew, that I would be really annoyed with myself if I got cancer in the other breast and could have avoided it. We are all different, and only you can know what the best thing for you will be. Good luck with your decision making. Love Chris xx
Janey235
Member
12 years ago
Yes I am really looking forward to a new year. 2013 has been a bugger for my family. With lots if things going wrong. Mostly little things but they've all added up to make this year one we'd rather forget. I'm concentrating on the rest of this year just getting better and better. Hope it does for all our pink sisters. Bring in 2014!
Janey235
Member
12 years ago
Yes, my husband is definitely my rock. He's a darling man. Thank you so much for your comments, they make a lot of sense. As I said in my reply to Viv, I think I've reached the conclusion that if I don't have them both off, I'll regret it. I still have a bit to go but I think that I've gone back to my previous decision to have them both done. Time will tell though. Love Janey xxx
VivW
Member
12 years ago
Thanks Janey,

Unfortunately I am in rural Victoria, I do think that I had a good surgeon but had to do it his way.

My Radiologist Oncologist made a random statement that he will be very surpised if I am back within 10 years?? But hey, I'm only 49.

I am pleased that you have made your personal decision, we cannot base our decision on statistics because they are based on 5 year survival. Once again I am only 49.

Should my cancer return in either breast, I know what I will be doing.

Look forward to your operation and say goodbye to 2013. 2014 hello new boobies ...

VivW
Janey235
Member
12 years ago
Thanks for sharing your story. At Peter Mac here in Melbourne, I have been fully informed and given choices about which path I want to take. I can't imagine how angry you must be about not having that. I was just discussing it all again with my husband and he said, knowing me, I'd worry and regret not having both off so I think my decision is made now. All that is left to do is for both of us to see the counsellors and to get the second opinion that my Surgeon wants me to do. Although he doesn't exactly encourage having a healthy breast removed, he did say he'd support my decision once he knew I had made it with all the facts and info taken into account. I've also got a fair bit of cancer in my family history although not all is close family. Mother with bowel cancer, uncle bowel cancer, aunty breast cancer (all survivors). Then my grandfather's siblings, my great aunts with breast and ovarian cancers, great uncles with prostate cancer. My Oncologist and my Surgeon have agreed that I haven't any close family members with breast cancer to warrant further investigation for one of the BRCAT gene mutations. My aunty being in her late 70s when she was diagnosed is considered not relevant. Like you, I can only trust their opinions. Thanks again for your support. Good luck with your upcoming surgeries. Sending you hugs and good vibes. Love Janey xx