Forum Discussion
I'm so confused now!
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
13 Replies
- 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
- 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
- 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
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
- 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
- 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
- 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!
- 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
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
- 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
