Support for Bi-Lat

marshakb · July 2007

For the ILC gals who chose Bi-lat, could you tell me why you did? I'm getting a little pi**ed at my docs for not taking me seriously and I plan to cut and paste some of your responses (as my support group) and take it to an appt. I have on Thursday. So whether you decided based on research or after a docs recommendation can you put some of your reasoning down here? Thanks in advance. Marsha PS, real tired of having to be my own "doc" LOL

wallycat · July 2007

Oh Marsha, I am so sorry you are unhappy with your docs. I fired my oncologist and found a fabulous new one whom I respect and works with his patients....a god send when you are terrified and in limbo.

My surgeon did not think I warranted a bilateral. He insisted I have a lumpectomy/snb, then talk to onco, then talk to a radiation oncologist. I told him from the beginning that I would opt for the bilaterals, but because I trusted him (and because I wanted to keep an open mind so I would not later regret my decision), I met with all of them.

If I were the type of person who could live in the gray-zone, I may have opted for lumpectomy/rads, but I am not.
So, my reasons are as follows:
1. Lobular is sneaky...I was terrified that the diagnostic equipment was missing something. Mammo/ultrasound missed my initial diagnosis and the MRI missed 1/2 the size of the tumor. (As it turned out, I in fact had NO other cancer or precancerous cells, which goes to show living in gray may not have been bad).

2. I did not want to have rads. I know many women who fly through it and have absolutely no after effects; I have never thought I would be lucky in that arena (again, don't like the gray). When the radiation onco (whom I ADORED and wished I would have actually has as my onco) mentioned about the 2% lung being affected (even though he said I would never notice, but it would be there), possible future lung cancer, rib-bone cancers/osteoporosis, burned skin, never being able to have an implant if I wanted one (I have opted not to reconstruction, but I can if I want now) and the time to do it.
3. I am a worrier (if you haven't guessed that already). I get anxious for every test known ...and the thought of 6 month follow ups for life pleased me..NOT. I would have to have 6 month breast MRI's followed by 6 month mammograms...for life. Not only the cost of time and money, but the anxiety!!! nope.

4. My right breast (with cancer) was my smaller breast to begin with; with lumpectomy, it became smaller. With radiation, it would probably have been even smaller..so I would have to have surgery on the left one to even it out. I was a 34D and so probably would have become a C, which was still too much ....I just turned 50 and knew if the left was made smaller and lifted, then the right wouldn't match...always something.

5. Finally, I had read that 30% of lobular shows up contralaterally. I feared that it would not get caught earlier and I would not have had as good a prognosis as I did this time.

A final comment. I don't think you should have to justify this to your doctor. I think he/she should be compassionate and understand that if you are asking for this, it is not on a whim. That if your only reason is peace of mind and symmetry, that is your right. I know they take a vow "to do no harm" but explain to them the emotional harm you are faced with daily if they do not execute your wishes!!

Best to you!

marshakb · July 2007

Thanks Wally, I had the right mast, 4A/C, 4 taxol and am doing radiation now. All that crap and they want to argue about removing the uni-boob? Makes no sense to me. I really like my rad doc who just came on board 3 weeks ago and he thinks my points are valid. With 4 docs in the picture (pcp, surg, med onc, rad onc) I'm not sure who I need to try to convince. My surgeon thought it was drastic to do the bi-lat and said I didn't need rads. Turned out there was another 1.5 cm LCIS in that breast that didn't show on mamm or u/s. Scared the crap out of me.

Thanks so much! Marsha

wallycat · July 2007

You're welcome. I know others will chime in.
If your surgeon (he is really, in my humble opinion the only one you need to convince as he is the one going to do the cutting and filing for your insurance) is unwilling to do the surgery, find another breast surgeon who is compassionate and understands or is willing to hear you out emotionally.
My doc did such a fabulous job on my SNB/lumpectomy that I told him I almost hated to ruin his good work....but would he be mad if I opted bilateral still and he said no, he wouldn't be bad. He is such a sensitive and caring man. My new onco as well..said he would happily order any test to comfort me should I get a health anxiety. He said quality of life is as important as treating the disease.
Best to you.
I can't even imagine all you've been through already!

gracejon · July 2007

Marsha, I opted for bilateral right from the get go. Knowing I couldn't feel a lump if it hit me in the face and having tender painful monthly cycles, I wanted them gone. I was made to feel by the surgeon that I was beinbg too radical and it was not necessary. Pathology report on the non cancer side showed LCIS in all four quadrants and ADH and ALH. Post op the surgeon said I made a wonderful decision. I am sure if nothing was found, I would have heard an "I told you so" I also wanted reconstruction that matched one breast to another and could not imagine how they would do that with one breast remaining. I am very happy with my reconstruction but the sides don't match exactly. When I consider what I had naturally, those didn't match either. I do think having a bilateral gave me a bit of peace of mind. It does not prevent breast cancer in the simple mastectomy side but with most of the tissue gone, it should decrease the chances substantially. There is an old saying about doctors. "The medical doctor knows everything but can't do anything. The surgeon knows nothing but does everything and the pathologist knows it all but it is too late." I'll bet on giving as much to the pathologist while I am living.

figsgirls · July 2007

Hi. I had bilateral as well. First I had a lumpectomy/SNB because we thought the tumor was about 2cm.

But then it turned out to be 4cm, and the margins were not clean. So my breast surgeon recommended a left breast mastectomy. He said he did not feel optimistic about the results we would get if he did a re-excision. Also because I had small breasts (A+/B-), the cosmetic result would have been poor.

I asked for the bilateral for 2 reasons:

1. The stats I read, that said lobular has a 30% chance of mirroring in the other breast.

2. If the cancer in my left breast had never shown on a mammogram, and then turned out to be twice as large as what showed on the MRI and ultrasound, I knew I would worry for the rest of my life about what might be hiding in my right breast. And since I'm 42, that's a lot of years of worrying.

When I asked my surgeon about a bilateral, he immediately agreed with my decision. He had to write a letter to my insurance company for approval, and got it with no problem.

We've all heard horror stories about insurance companies denying payment on stuff, so when they approved my bilateral so easily, that told me something.

There was no sign of cancer in my right breast, thankfully, but I don't regret my decision at all. I still don't trust that something might not have shown up in years to come. And again, I got 100% support from my surgeon about my decision.

Good luck in your fight. I hope you get what you feel you need for your health and peace of mind!!!

Donna

AnnBrown · July 2007

My story is almost exactly the same, with huge tumor that didn't show up on mammo or us. Had bilateral without reconstruction, and don't regret it. My surgeon was in total agreement and the insurance company never blinked, either.
Good things about bilaterals without recon:
1. It's easier to match 2 breast prostheses rather than one to a natural breast.
2. I don't worry about the other noncancer breast. I would have driven myself crazy not trusting mammos, etc.
3. Can go without bra/boobs under tshirt at home....very comfortable.

Final thought....do whatever will give you the most peace of mind. It is a tough enough battle after treatment is over to learn to trust your body again. I am always trying not to be paranoid about every ache and pain. So, do what's best for your own peace of mind.
Ann

figsgirls · July 2007

I already posted in response to why I went with a bilateral, but I wanted to give my thought on reconstruction. I LOVE my new boobs and they're not even done yet! I had immediate reconstruction using tissue expanders. It was exactly one month on Saturday and I am feeling great. For me, in retrospect, this whole thing would probably have been more traumatic had I awakened from the mastectomy with nothing there. I was small busted, and my boobs were no big deal to me, but I think I'm more emotionally invested in having breasts than I thought I was.
Anyway, the new ones are very firm and perky, so I also don't need to wear a bra. Which I love love love. Once I get the nipples, that may change but I may just cover the nipples and still not wear a bra.
I'm 42 and just couldn't imagine myself not reconstructing. But that's just my side of things - it's all such a very personal decision.

Donna

wallycat · July 2007

Figsgirls, I so admire the ladies that do get reconstruction.
We have to do what is within us and what we think is manageable emotionally and pain-wise.
My reason for doing no reconstruction was several fold.
#1. I turned 50 a month after dx and had my bilaterals after I hit 50...I think if I were in my 40s it would be more important to me but for some reason, 50 and older made me think it wasn't as important for my personal satisfaction.
#2. I am happily married and my husband has never been into the big-boob thing. Even when I met him, I was very well endowed and he said he was attracted to me DESPITE the fact I had big boobs (men, who can figure them out ).
#3. I am a HUGE, HUGE chicken. I don't know why I envisioned longer recovery and more pain. My girlfriend just had this done last year and she said she'd had infections, a pain pump, blah, blah...I think she shared too much. We are all different. There are women here who come out of mastectomies and require pain meds and others (like myself) who needed nothing. Still, pure and simple, I was terrified to do it.
#4. Because I'd had big boob most of my adult life (34D), the thought of LESS was actually appealing. I wish it weren't quite so flat, but if I had to pick this or the other, this is sooooooo much more comfortable and easy. Toss on a t-shirt, walk or jog with no bra and no huge sweating under the boobs....so for me, it was great. My DH was talking to his brother the other day and I heard him saying ..."gosh, all her friends are getting bigger and my wife is the only one who would go small or none"...maybe the old "grass is greener" theory is in effect here.

Marsha,
how are you doing??? how did your doc visit go and are you able to get what you need/want??

p.s. my friend's boobs turned out FABULOUS! She had the nipple done and then tattoo added. She is very, very happy. She is bigger and they look AMAZING. She is very, very satisfied. I look at her and wished I were braver. Plus, her scar is sooooooooooo much smaller having the reconstruction because they save all that skin. Ah well....

Anonymous · July 2007

Marsha -
I just now saw this thread...how did your appt go? Please update us. I had the prophyl mast because my Onc and bs both told me that because I had ILC and LCIS in the same breast...I was at a higher risk of developing bc in the remaining breast. And, I kept having to get ultra sounds and biopsies in the remaining breast due to so-called "cysts". Everytime one popped up, I freaked at the thought of it being malignant. I simply told the Dr.s that I could no longer live - biopsy-to-biopsy. Give me your Dr's phone number...I will call him for you and I'll whip him into shape! LOL OMG LOL

But really...I hope everything is going well. I haven't been on board much lately...really busy! Hang in there...let us know.

marshakb · July 2007

Well, keep you fingers crossed for me. My onc sent a 'note" to the surgeon saying we had discussed prophy mast on left breast and that he found my request reasonable. So an order has gone through to the surgeon. the surgeon is the one who is for some reason battling me on this. My rad onc said it wasn't his place to make diagnostic decisions on my cancer treatment so I have him as a back-up if need be. The order said "left breast and port removal".

I really like this guy otherwise. From what every single person who has seen my scar (and there have been millions) everyone says what a great job he did. I'd like to have the same scar on the other side so that is why I am hanging with the "best boob guy in town".

Thanks all, love you guys! Marsha

Lynn12 · July 2007

Marsha,

Keeping my fingers crossed for you! Sounds like the order is in order!

Best of luck and keep us up to date!

hugs,
Lynn

conniehar · July 2007

Good luck Marsha. I can't believe he is battling you on this!!

I am halfway through chemo and plan to start the conversation about this with my onc soon. My surgeon already told me he would do it no problem, but I do want to get my onc's opinion before I do it. I am 99% sure I will go through with it.

LizM · July 2007

Marsha, I thought I had already posted on this thread but I guess not. I chose a bi-lateral for the same reasons as stated above. Mammo failed me, did not trust imaging on other breast as well as being diagnosed with LCIS and ALH in addition to IDC and ILC in cancer side. I'm glad I did because my good breast had ALH and would have cooked up the same thing in time. Marsha, what I don't understand is your doctors having an objections to your request to remove your other breast. I was treated at Johns Hopkins and my surgeon is the chief of the breast center and is considered one of the best. He did not even blink an eye when I requested a prophylactic mastectomy on my noncancer breast. He was fine with it but did want me to have reconstruction. Anyway, my scar is very small on both sides and people are amazed who have seen my reconstructed breasts. I agree it is important to have a very good surgeon but it is also important that you are able to do what is right for you. Keep pushing for what you know will give you peace of mind.

marshakb · July 2007

Liz how funny you should mention recon. If I'd said I want to remove it and recon both for symmetry that would have been no problem. For some reason he just doesn't feel I am at enough risk with the other breast. I finally said "well I hope we aren't leaving that on there for Jim" LOL Not funny but what are you gonna do. I don't think he will argue with the 2 oncs and my pcp said he'd refer me to someone else who will do it so I am going to have it done. Just would like to have it covered and paid for.

I told my onc that this in NOT Vegas where if I gamble wrong I loose my shirt but my life!!

Ratchada · July 2007

I had a bi-lateral mastectomy five years ago. There was invasive lobular cancer not picked up on an MRI or Mammogram. I could not get clear margins after two biopsies (at least node negative). The affected breast was rarely a problem. It was the other one that had had multiple biopsies and had always been a concern. I have a high-anxiety level and knew I would be terrified all the time so I opted to remove both breasts. In retrospect there are times when I wished I had kept the other breast. I also should have had silicone implants. They are softer and more natural looking. I heard a famous oncologist talk about women missing the feelings of hugs. My children are grown and I am separated from my husband but the hug thing is big for me. I am a teacher and always self-conscious when my students hug me. I can understand you wish for the bi-lat surgery but did just want to give you another piece of things. I figure I will never find anyone for a relationship with these rock hard, albeit perky boobs. oh, well. At least I am alive and well. Good luck!

Mcalot · July 2007

Marsha,
Hope that your discussions are going well. I was stage III 8 months after a clear mammogram. Needless to say, I was not very trusting of their ability to find another ILC in the other breast. My oncologist and surgeon assured me that they would monitor me with yearly MRI's and find anything new at a much earlier stage. I wanted to do both at once, but I was not 100% sure so they suggested that I do one, get through chemo and rads and then do the 2nd if I still felt that way. After treatment I found that I did not like having just one breast and worried about having to go through treatment again if anything happened. My oncologist and surgeon said both reasons were fine with them and scheduled the surgery (insurance paid). I have not regreted it at all as I was so asymetrical. I sleep a whole lot better not having the breast and not worrying about it anymore.

marshakb · July 2007

Surgeon is still sticking to his guns for some reason. His office called yesterday to schedule the port removal and I said just port? She said yes, he doesn't feel the mastectomy to the left breast is justified. Both oncs (med andrad) said I was justified but apparently my surgeon thinks his opinion means more. I did not sleep a wink last night and have cried all day. I'm one who cries when I get reallllllllly MAD and you can bet I am steaming.

shrink · July 2007

Oh, Marsha, I'm so sorry for the frustration you're feeling. I have been diagnosed with ILC and IDC and maybe IBC. At the end of 4 ACs (end of August), I'm going to speak with my BS about a bi-lat mast. Like you, I don't want to have to worry about it turning up in the other breast or going through chemo again. It seemed to have turned up so suddenly that I'm afraid it could sneak up on me again. I hope this can be worked out for you with other BS opinions and maybe your insurance company. Come to think of it, I'm certain the ins. companies want to save money if they can but at whose expense? Don't blame you for steaming. I'll be thinking of you.

conniehar · July 2007

Marsha - that stinks. I am so shocked!! Can you be referred to another surgeon?

nash · July 2007

That bites--I'm sorry you have to fight him on this. Life's ironic--I don't want a bilat, and my surgeon and onc are pushing for it, and you want one and your surgeon says no.

Maybe you can push the pleomorphic ILC and the LCIS angle with him? That pathology (along with family history and young age) is what prompts my docs to recommend the bilat for me. I just don't understand why he's disagreeing with all your other docs. Also, this is one of those decisions that should ultimately be made by the patient, and you have a solid clinical reasons for wanting the bilat.

Good luck, and keep us posted!

marshakb · July 2007

The man never even discussed the pleomorphic pathology with me. I found that bit of info on my own.

Lynn12 · July 2007

Oh Marsha, big hugs! I'm so sorry your surgeon is being a jerk about this. Geesh! Is there some sort of appeal to the program you are in that can get you a different surgeon?

I have my appt. w/ a new breast surgeon in Sept to get the lb proph. mastectomy...it really didn't occur to me that she might say no...I hope not!

Lynn

scarednancy · July 2007

My surgeon said that because I have had ILC, she will keep a close eye on me for a long time which will include mammograms, ultrasounds and MRI's. I feel better knowing they are watching me closely. If I do get another tumor, I think I will opt for bilateral but for the time I will just try to be positive. Afterall, a lot of women never get it back after the first occurance.

karen1956 · July 2007

Marsha - I am so sorry that you are having such a difficult time with the surgeon - or should I say he is giving you such a difficult time. When I was Dx, I interviewed 2 surgeons - the female said to me that I should consider a bilat and the male said if I was his wife he would tell me to have a bilat. Both docs mentioned bilat before I could even ask about it as it was on the list of questions that my DH and I had for the surgeons. I considered the bilat as soon as I was Dx as I did not want to have to worry about the BC coming back in the other sideside. It was a darn good thing I did as the left side came back precancerous - ALH. After I had the bilat at my 6 month follow up I asked the surgeon why she recommended the bilat and she gave me several reasons - I really don't remember them all as it was last September and they were somewhat generic but she listed reasons that she recommends bilat to patients - some where I am Jewish of Eastern European decent, the ILC was hard to find and I don't remember the other reasons (sorry). Can your PCP refer you to another surgeon? I've never regretted doing the bilat, though at times I do wonder if doing recon was the right thing. Sending you hugs and I hope you can get what you want (and need) done. It is your body and you know what is best for you. Karen in Denver

Anonymous · July 2007

Marsha -
FIGHT MAKES RIGHT! Eventually you will find a surgeon that is sympathetic and agrees that you should have a prophyl...hang in there dear...I'm shocked you're having such a difficult time with this...you should not have to deal with this after all you've been through. My suggestion is to schedule appt's with several different Dr's and eventually you will find one that agrees with your wishes...

mtlion322 · August 2007

Marsha,
I always said if I joined this club, all would go! Well I joined the club on 06-07! My original report was 1.1 cm, and orig the doc said no problem just a lumpectomey some rad treatment you would be fine! It was not her that day I was starting to become overwhelmed! By than I had been through the mammo, the u/s and the core bx, than the diag hit and all the info started flying at me!

THE BEST THING TO DO IS RESEARCH, BECOME YOUR OWN ADVOCATE AND FIGHT THE GOOD FIGHT!!!!

1)I did this because I am no gambler, I have a compromised immune system, ie:crohns and arthritis. I am afraid I could not fight a recurrence

2)I have a family that I want to be around forever! I husband I promised 80 years to. A daughter just getting married and starting her life, and I really want to be a grandma

3)Finally, a special needs son that I am not ready to leave!

If you feel that this is right in your heart, fight the good fight girlfriend! I read that it is more likly to jump to the other breast, ovaries, lung and liver!

I was lucky, I had a great phys, not that she just did it, but because she told me her thoughts and then really listened to my and my fears! Than we made a decision together!

I have not thought twice about my decision, and I am glad I did this because they did find pre-cancerous cells in the left breast that did not show up on the other tests!

I pray for you, and hope all goes well!

marshakb · August 2007

Well thank you ladies for everything! I saw a breast surgeon in Orlando yesterday and he has no problems "justifying" the removal of the uniboob! As a matter of fact, on the order where it says "matter of life or limb/" he checked YES so the hospital would know it WAS NOT elective surgery but medically necessary!! I am soooooooooooooooo relieved I can not tell you! Oct 1 is the surgery date. He will remove the port at the same time. He said this will change my survival rate from around 82% to 95%. Now there is a number I am more comfortable living with!!!! YIPPEE

Marsha

nash · August 2007

Great news, Marsha!

Sandra1957 · August 2007

That's awesome Marsha!! 80's to 90's is worth it to me.

gracejon · August 2007

I am very happy to hear your news. You persisted and can finally get what you wanted. I personally found great comfort in accomplishing what I set out to do. Many best wishes and CONGRATULATIONS!

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