questions

LT

Just got back from the 4 hour drive to meet with "my surgeon". No one closer does many reconstructions - removes them extremely well I understand, but not much experience with putting them back. Surgeon was kind, confident and caring and we like him a lot. However, he doesn't really agree with my idea of a double mastectomy when only 1 breast is affected. No family history,no lymph node involvement so far but I am having genetic testing done now. I have DCIS, but it is widespread and I'm fairly small chested so a lumpectomy would be almost the whole thing anyway. He said it was my decision, but that it may be considered elective surgery by my insurance if I go ahead with both. I don't think I'd obsess with worry if I just do the right, but the main thing is, I don't ever want to go through this again, so I'd just as soon say bye to both of them at the same time. Any one with experience on insurance in a case like this? I thought about just calling ins. company, but of course it's the weekend and it seems like ya'll have had just about every experience in the book so I'm just asking you. I'd like to try to sleep some tonight but this is bugging me.

mlmjt1

Hi LT
I know how you feel about thinking about the unaffected side. My cancer was widespread on the right side, but I have always had fibrocystic breast disease on both. When I had an mri done of both breasts, I was told the left side had an area that they would always have to watch. I pretty much decided years ago that if cancer showed up in either I would have both off. I have no family history of breast cancer. I didnt know about lymphnode involvement until they checked out the sentinel node which was positive. 21 nodes were removed and they were all clear.

I had insurance thru GM retiree program thru my husbands former employer and bilateral mastectomy with reconstruction is covered thru that insurance.

Keep in mind though...my understanding is even if they remove both breasts there is no guarantee that it wont reoccur...no promises

Hang in there and let us know what you decide to do...but do what gives you the most peace of mind.

HUgs
Linda T

DianeBC

Hi Lt! Glad you got to meet
Hi Lt! Glad you got to meet with your doctor. First, bc can come back even with a mastectomy because you still have breast tissue left. And, about your insurance? You should call them and find out if they would cover it or not. Or, have your plastic surgeon call them. Insurance's vary inre to what they will and will not cover. They are all different. And, depending on what you doctor says in his report to them. So, just check it out and if they won't pay, be sure and be aware of how much it will cost. There are organizations that will help people. Good luck. Update us when you can!

Hugs, Diane ♥

2ljjames

Bilateral vs. Single Mastectomy
I had a right mastectomy about a decade ago. I did not opt, at that time for reconstruction. I thought I'd lose some weight.... years passed. More than ten years with a hot, heavy prosthetic. Finally, I overcame the inertia and visited a plastic surgeon to inquire about reconstruction, only to find that I am not a good candidate for it! It seems that there was significant damage from the radiation. I opted, instead, for the removal of the left breast (May 28, 2009), just to quit being lopsided. I wish I'd not waited. While you may not encounter the same difficulties I did, as I had a D cup, these are some of the things I went through: I had chronic tendonitis (requiring surgery) in my shoulder - prosthetics get heavy and while your natural breast is suspended from your chest wall, the prosthetic hangs from your shoulder (ever get an aching shoulder from your purse?). My bra had to be worn tight to prevent the prosthetic shifting around which caused chaffing and discomfort. If I did not wear a bra for more than a few hours, my back would ache from the uneven distribution of weight. How can this be considered elective surgery? If you have one side reconstructed, that side stays the same size if you gain or lose weight while the natural breast does not. Symetry is much more important than your surgeon seems to realize for both your physical and emotional well being; remind him/her that you will also be greatly reducing the chance of a recurrance of the cancer.

lolad

Lt
Just to let you know that i had my left breast infected with the tumor and they never did any test on the right. I went for the double mastectomy and am very glad that i did because the right breast tissue started forming into cancer and i had limpomas that were turning as well. I thank god that i made that choice for myself because god only knows had i just chose the one i would have been going down the same road with the right breast on down the line some other time and god only knows when that would have been. Im not saying that this is what you need to do as well, just sharing my experience with you on my case. Good luck and i was like you anyways, just wanted to get rid of both and start all over and make sure they were both clean and am very glad i opted to do it that way. Take care.

laura

djteach

Hi LT,
My name is Donna and
Hi LT,

My name is Donna and I had my left breast removed and I wish I had both removed. My first reaction to your post was to be angry at your surgeon. How dare he make that choice FOR you. That is your choice and nobody elses. Then I got down off of my women's rights box and remembered that you had to drive 4 hours for this one. I put my mouth back in first gear and will say to you, talk with your surgeon and see if you can convince him to back you medically IF you decide to have a bilateral. There are so many hard choices to make and it is not my desire to sway you to one side or the other--no pun intended. LOL

Whatever you decide, we will be here to support you! Please let us know what you decide and how you are doing. I know the waiting is the worst part. Do something nice for yourself to keep your mind off everything--you deserve it. You are in my thoughts and prayers.

Love and gentle hugs,

Donna

Wolfi

Insurance experience
LT,

I just had my double mastecomy last Wednesday. I had DCIS in the right - no lymph node involement and nothing showed up on the left. Since a right mastectomy was something I HAD to do I thought long and hard about everything - single with or without reconstruction and double with or without reconstruction. I decided on a double without reconstruction but found out that my insurance wouldn't cover removal of the left side unless something was found (which could be never or years down the road). I had genetic testing done and spoke to my oncologist. The genetic counselor, oncologist and my surgeon had to sign off on the paperwork in order for my insurance to cover both.

The history of breast cancer in my family was not significant enough to have it be a hereditary breast cancer, but just the fact I had DCIS in my right increased the risk for both myself and my daughter to have problems later. I was very open with all the doctors and told them that I didn't want to have my right breast removed now and find out a year (or five or 20) from now that I had cancer in the left and would have to get it removed, too. I wanted them both done at the same time and was prepared (mentally) for how they would look and what I would have to deal with as far as using some kind of padded bra for a more natural look.

My concern (personal stress) for breast cancer occuring in my left breast I think was enough to have them all sign off on the paperwork for the insurance to cover both. Mental health can play a HUGE role in any type of breast cancer and the treatment.

Research, read the posts in this forum, and talk to others who have gone through what you are dealing with - information is power and being able to explain WHY you want what you want is part of the battle with the doctors/insurance companies.

I wish you luck in your journey and hope my post has helped you in some way.

Take care!

butterfly343

Hi LT,
I understand your
Hi LT,
I understand your feelings of never wanting to go through this again. I had two lumpectomys, so I can't give much advice on the mastectomies. My line of thought is to take every treatment or process available in the begining, because I never want to do this again.
Sorry I couldn't be of more help.
Julie

LT

butterfly343 said:

Hi LT,
I understand your
Hi LT,
I understand your feelings of never wanting to go through this again. I had two lumpectomys, so I can't give much advice on the mastectomies. My line of thought is to take every treatment or process available in the begining, because I never want to do this again.
Sorry I couldn't be of more help.
Julie

Thanks so much for the
Thanks so much for the input. Many of my own thoughts have been echoed by you ladies - it's good to hear them from someone else -nice to know it's not just me - that I'm not being crazily over-reactive to want to just do both and get it over with. Now what I have to pray about is whether this is really the best choice for me or do I want it because that is the plan I've built for myself in my mind and I feel safer if I stay with MY plan. Isn't it strange how when we're ripped so rudely out of our safe little world, our mind goes into overdrive trying to make a whole new safe little scenario and even though deep down we know the beast is still out there, we can almost fool ourselves into thinking we're safe as long as we stick with the plan!Sorry......that is the rambling of a stressed out, sleep-deprived person.
What I'm struggling to remember is that while this whole thing took me by surprise - it didn't surprise God and that, even now, in my confusion, He has a plan for me and I just have to be still and calm down enough to hear his voice.
What a blessing this site has been to me already - thank all of you for the advice, encouragement and just being there!

susie09

LT said:

Thanks so much for the
Thanks so much for the input. Many of my own thoughts have been echoed by you ladies - it's good to hear them from someone else -nice to know it's not just me - that I'm not being crazily over-reactive to want to just do both and get it over with. Now what I have to pray about is whether this is really the best choice for me or do I want it because that is the plan I've built for myself in my mind and I feel safer if I stay with MY plan. Isn't it strange how when we're ripped so rudely out of our safe little world, our mind goes into overdrive trying to make a whole new safe little scenario and even though deep down we know the beast is still out there, we can almost fool ourselves into thinking we're safe as long as we stick with the plan!Sorry......that is the rambling of a stressed out, sleep-deprived person.
What I'm struggling to remember is that while this whole thing took me by surprise - it didn't surprise God and that, even now, in my confusion, He has a plan for me and I just have to be still and calm down enough to hear his voice.
What a blessing this site has been to me already - thank all of you for the advice, encouragement and just being there!

Sorry Lt that you are having
Sorry Lt that you are having this difficulty in a decision. I had a lumpectomy, which I am so thankful that I could have one. I don't think I could have faced a mastectomy. The chances are the same with both, for a recurrence and survival rate. You just do what you feel is what is for you. Get all of the information and go from there. Good luck!

♣Susie♠