Completely Overwhelmed

Hi!

I opted for a lumpectomy precisely because I didn't want to deal with reconstruction, which can involve multiple surgeries. There are a lot of women at BCO who have undergone delayed reconstruction, so that's definitely an option. I'm sorry that your insurance is being a jerk about the double mastetctomy, but it might be easier for the plastic surgeon to get your boobs to match if you pursued that option.

Another consideration: is your medical team recommending radiation? If so, that would be another reason to delay reconstruction.

I do think that the surgical options can be overwhelming, especially if you have pre-existing conditions. As long as you tell your breast surgeon that you would like to pursue reconstruction in the future, you should be all set. The surgeon can leave extra skin and the like to make that possible.

((Hugs))

Are you sure your surgeon is directing you with all choices? 2cm still meets the criteria for a lumpectomy -I believe greater than 5cm is the cut off.

Also, mixed typed cancers are shown to have better outcomes, even though you wouldn't think so.

Just didn't want you to be misinformed. Wishing you the best.

No problem Dee. I'm sorry you're here and going thru this. If you're comfortable with your decision that is a good thing. Best wishes to you!

I also had a mixed type tumor. DCIS with invasive IDC with lobular features-cribiform. I think having some PR+ it was poking holes in it. I understand that progesterone was trying to fight that estrogen but over time the estrogen won. My body was trying to fight those cells. Radiation is easy for some and no picnic for others, so I totally get wanting to avoid that. I hope that you can. Your pathology report after surgery will determine course of continued treatment. Let us know how it goes.

DeeDee,

I went with a double mastectomy for a small IDC, mainly because of my dense breasts and numerous call backs in the past. Needless to say, my BS was glad I did (and he’s very conservative) because they found DCIS/LCIS that went undetected on 5 imaging tests in the weeks prior in final pathand I probably would have had to go back and get a mastectomy anyway. Density makes it really hard to detect. I’m just doing Tamoxifen.

On the other hand, my mother did a lumpectomy with rads (small idc) and did fine. She did hers partly for being older and my surgery was much tougher. It’s a hard decision. The stats are the same for that cancer alone I believe, but my BS said my density alone was a risk factor for another cancer again. I hate choices. I’ll pray for a good outcome.

Have you had an MRI of both breasts? I had an MRI that should 2 small tumors in my non cancer breast. They did not show up on the mammogram or ultrasound. I'd have that done befor I made any decisions. Good luck.

It's infuriating!!

Beesie that's a great link, but Dee here wants a double Mx and BS will only do one. She's right, the only way to get it done is have the Dr. deem it is necessary.

You have to fight for your life and your own health choices apparently. That's not right.

Dee, did they offer you any genetic testing ? Not that I would route for it, but if you tested positive for a mutation, then your surgeon might change her mind.

ctmbsikia, I understand that DeeDee's breast surgeon is stopping her from having the BMX, but the fact that there is law that requires insurance companies to pay for symmetry procedures for the contralateral breast, including a prophylactic mastectomy and reconstruction, seems to be a pretty compelling argument to make to the breast surgeon to get him to agree to the procedure.

If it were me and I was certain that I wanted to have the BMX (which it sounds as though DeeDee is not), I would go to the BS, tell him that while I appreciate his advice, I am the customer, it's my body, I have educated myself about the options, I have made my decision and there is a law that says I get to decide what, if any, contralateral symmetry surgery I want. Period, end of discussion. I realize that technically the law doesn't apply to surgeons, but I'd leave out that part - I doubt the lawmakers ever thought that a surgeon would stop a patient from being able to have a symmetry procedure in a situation where they are compelling an insurance company to pay.

DeeDee, I recognize that you have some unique issues related to the Ehlers Danlos and Sjogren's, but since you are having trouble deciding what to do, this thread might help:

https://community.breastcancer.org/forum/91/topics/868997

since you were diagnosed young, I would consider a genetic test. Do you have any family history of breast cancer? If the genetic test (for BRCA1 and 2) is positive, I would definitely get a BMX (and insurances should cover it), if not I would get UMX and delayed recon and see how you do with just one breast. This is what I have decided (in fact, I have decided that I don't even want delayed reconstruction, so my BS did not leave extra skin but made my chest very nice and flat). Genetic test was negative, so I wanted to keep at least one breast having sensation. So far I am doing great with just one breast and a prostetics for the other side (it has only been 2 months though). I did have small breasts to begin with, and so even without a prostetic in winter clothes one hardly can see if I wear it or not. But even with tight summer clothes, it looks great with my prostetic. I have no regrets. I would say follow your gut and don't think about what others would say.

I was in a similar boat, 35, only DCIS but went with bilateral mastectomy. In the initial appointment with the surgeon they handed me a lumpectomy brochure but my mother had a lumpectomy and to eventually get mastectomy anyway. I wanted to try to limit the possibilities of recurrence. Being asymmetrical did not appeal to me either. I am surprised they are giving you such trouble, you're in the US and outside of a major city wtf.

You are also under 40. Because you have longer to live than someone who was diagnosed at 60, it would be a preventative measure to remove the other breast. By law insurance would have to cover a breast reduction to your non-cancer breast to try and make it the same size as a breast that had a lumpectomy. (EDIT: Bessie explained this better) It sounds like you just have a shitty doctor trying to manipulate your path. Express concerns about having only one breast, how it might cause you back pain, and make it difficult to find clothes etc.

Stand up for yourself but also if you don't already know what you want to do regarding reconstruction, doctors might try to push you around or think they know whats best for you. If you know you want recon you would probably want to opt for a skin sparing mastectomy. If you think. you might go flat though, make sure they DON'T leave skin behind for you. I did not have reconstruction and going flat was surprisingly easy. Easier than missing lymph nodes or worrying about cancer being back. But it was pretty compatible with my body size/shape. Most people just thought I lost weight. Look around more online at as many pictures of the various options as you can. Implants also did not appeal to me (my mom has them and hugging her feels like a wall is between us) and I didn't want to alter other areas of my body to make mounds. Personally I don't think the options available to us are that great, nothing compares to a healthy, natural breast. Some people care most about how they look in clothes to others, I cared more about how I felt in my own skin, plus I also sleep on my stomach a lot. Do what feels right to you and don't allow doctors to push you in a direction you don't want.

Sorry you are being hassled over this. Be sure to vote in November.