MIDDLE-AGED WOMEN 40-60ish

MinusTwo

justamy - so sorry your DH isn't supporting you.  Personally I think it's easier to deal w/both of them gone, either to stay flat or for reconstruction.  And sure enough, the lymph nodes on my "other side" had a recurrence or mets before 2 years was over.  Someone else will no doubt weigh in but I think that insurance will cover a prophy mastectomy of the other side.

justamy

I am planning on having reconstruction and I thought the same way....esp for my health. If they take one, they might as well take them both. I want the least chance of doing this again! If I can get hubby behind me then I will find another surgeon if I have to. By the first of the year (when i have surgery) I will have private and social security disability insurance so it should be good...thanks for helping me validate my feelings on this!

MinusTwo

justamy - Each of us is different and all of our points of view are valid!  The good ladies at BCO will be here when you need to talk.  Good luck w/continuing chemo.

3rdtimenow

Insurance should cover a double even if you only have cancer in one, it's done all the time.

justamy

Perhaps validate was the wrong word...thanks for helping me figure out what to do and put into words what I want for myself. and I'm glad to hear the insurance part. Nighty night all.

Momine

Justamy, the first surgeon I saw said the same thing. I got another surgeon.

The argument is that your chance of developing contra-lateral is tiny, and so a BMX does not improve survival, statistically speaking. I am sure that is true. This numbers argument does not take into account, however, peace of mind, symmetry, QOL (no 3-monthly checks of the "good" breast) etc.

It is a big decision, and the docs are right that purely medically speaking, there is no reason to do it. But if you have other good reasons to do it, find yourself another doctor.

Tomboy

my radiated lumpy breast is smaller & higher than my lefty "good" one. lefty is also larger since ive been taking those pesky pills,too. waaaay bigger. not fun.

HomeMom

Calcium deposits on their own are not signs of cancer, it's when they start to multiply and group together right? Having fibroid cystic breasts can include calcium deposits that never turn into anything - that's what I've been told anyway by docs over the years.

elimar86861

justamy, Much like our breasts during a mammo, you are between a rock and a hard place now.  These thoughts come to mind:

That a breast with calcifications is healthy is questionable.  Another doctor might disagree, if you go for 2nd opinion.  I don't know how often calcifications turn malignant.  That is question I would want answered.

Removing the alleged "healthy" breast would give you twice the potential for surgical complications and for lymphadema.  There is that to consider, as well as lack of feeling on both sides rather than just one. 

barbe1958

justamy, my right "healthy" breast turned out to have ADHP which IS the first stage of cancer! It did not show on MRI or mammogram, but would have shown up within months of my surgery. I am so glad I only had ONE surgery to recover from. I did NOT have to have lymph nodes taken from my "good" side, so risk of LE was MUCH lower than if there was a suspicion of cancer! My body has learned to make breast cancer and I have Isolated Tumour Cells (ITCs) circulating in my blood and tissue. It would have developed in time in my "good" breast anyway. I have heard time and time again of women getting it in their left-over breast! Now you have to have yet another reconstruction experience (surgery), as well, as that is your choice at this time. I know of women that were told to wait 6 months to get the other one off. Why????? The surgeon said it would be "easier" to deal with one at a time! Are you kidding me? I NEVER would have gone through it twice and I WANTED them both off. I was so glad I did it at the same time. As well, my surgeon only got paid for one surgery....as well as OR time, anaesthesiologist, OR nurses, hospital, etc, etc, etc, etc, etc......get it??

jbokland

justamy- That is NOT his decision to make...it is yours!  That's why they call it a prophylactic mastectomy. ESPECIALLY with calcifications

You need to see another surgeon for a second opinion.   I chose that route (without the biopsy) and it was good thing I did... I had trouble brewing and would have been dealing with another surgery in a year or two. 

staynsane

Justamy- You are wise to completely evaluate your options and make the best decision for you.  After I was diagnosed and told I needed to have a mast I immediately thought that I would want a bi-lateral.  But discovering that cancer in one breast does not automatically mean cancer later in the other (only slightly increased odds) helped in my decision to wait for BRCA test results.  If positive, I was going to have a bilateral.  My result was negative, and my BS strongly encouraged me to have a uni, for reasons similar to what you were advised.

I am so glad I did.  I still have feeling in one breast, which really adds to my enjoyment of time with hubby between the sheets.  My chest is very symmetrical (nude and clothed) because I had a reduction and lift on my right side when an implant was placed in my left.  Not all results are great with any surgery, and I have two girlfriends who had bmxs and both ended up with one side that was acceptable and one that was problematic.  A bmx also will likely require a greater recuperation period with lots of help needed.  If you weigh all of the particulars to your case, I'm sure you'll make the best decision for you.  And once you decide, it will put your mind at ease.

barbe1958

Good points SNS about symmetry, but I do have to add that most of us didn't have symmetry even when we had our original breasts! hehehehhe

Recuperation twice and anaesthetic twice is harder on your body than doing it once...I do have to push that point. You will feel it whether you had both done or just one and be restricted to lifting a certain weight limit with either option. 

Edited to add that it was the lymph node removal that was the harder part to recover from, and that is on one side only anyway.

Momine

staynsane, all good points. It is a difficult decision with many factors entering into it.

As for symmetry, I meant in case you do not reconstruct. 

justamy

Thanks for all your input. I think I want a Bmx because of all the reasons you have listed. They do not think there is lymph node involvement. They biopsied the one they thought might be but it was clean. There is a lot to think about but I have 5 months at least.

Tomboy

some kind of microcalcifications are completely benign, such as 'popcorn' kind, or vascular m.c.'s, funnily enough, the vascular kind can be an indicator of heart disease. It is the clustered linear or branching kind that are most concerning for early disease process. i did a lumpy, cause i had no idea that the internal scar tissue would be so enormous. i don't like it. if i ever have another problem, off with, for me, no recon. i don't want to mess with my muscles. i still miss my breasts. they were nice and even. apparently i had a pretty good surgeon, as i do still have nip sensation, she is just a little pulled to one side.

justamy, you do have time to figure out whats right for you. just one question. is your surgeon a breast surgeon, or a general surgeon? 

Tomboy

..also, if you are switching, you might think about finding a new breast surgeon sooner rather than later. you might get tireder than you think after a few rounds of chemo. at least i did. i didnt want to do anything i didnt strictly have to do.

justamy

My surgeon is a general surgeon. The only "breast surgeons" in this area are plastic surgeons. They do the recon.

Tomboy

can you go anywhere else? Dr. susan love's breast book says that you should go to a breast surgeon specifically. you don't want someone messing this up, as can happen with a general surgeon. your first shot is the best. for me, the fact that he doesn't want to do the other one prophylactically, is a big red flag, like maybe he is not really confident in his abilities. i beg you, please please please, try and find another! plastic surgeons are plastic surgeons, and not breast surgeons. there are some very imprtant nerves at spencer's tail, between the breast and the axilla, that if messed up, can seriously damage your arm. i would ask how many mastectomies he has performed. you want someone who does them every day, not a couple times a year. or you could ask to speak with other patients of his that he has done them to. i am getting worried for you now.

Eph3_12

My lumpectomy was done by a general surgeon.  If I knew then what I knew now, I would have had a BMX & I would have found a breast surgeon.  That's me.

elimar86861

justamy, Let me clarify...a breast surgeon is a general surgeon.  Some, but certainly not all, may have done a fellowship for surgical oncology for breasts; but others are called "breast surgeons" because that is the specialty area they handle for their practice.  The latter is not inferior as it means they do the majority of all breast cases which (in a fair sized city) can amount to dozens or even over 100 breast surgeries a year.

My surgeon was a general surgeon but he did almost all the breast surgeries out of one hospital.  He had a great rep. and my lumpectomy surgery went very well, clean margins, etc.  The bottom line is you DO want an experienced surgeon who does upwards of 50-100 breast surgeries a year.  The more the better.  If you live in a small community, this might mean going to a larger regional facility.

justamy

My surgery will be in Springfield MO which is a fairly large city (3rd largest in MO). If I were to travel it would be at least 4 hours to St. Loius or Kansas City. This would be difficult for me.  The breast clinic here is one of the best in the nation and my Oncologist was the one who set me up with the surgeon. He has been doing surgery since 1974. I will inquire about the number he has done. I know it is a lot because he was describing some to me. I will do my homework. I never even thought about there being a specific breast surgeon until now...Thanks for your concern and info.

justamy

ok a quick phone call told much more. He is a certified breast surgeon. They list him as general because he does some other minor surgeries as well. He is also certified to deal with lyphodema. Sorry for the confusion. I feel better now that I checked it out.

justamy

Thanks elimar. I also found he does most of the breast surgeries in Springfield which is a city of 162,900 people that also serves much of SW MO. I think I am good here as far as his credentials.... Now just the prophylactic thing.

Tomboy

Good job, justamy! Those are all good things to know. he must be at least 60, then, and that would explain his reluctance to do the prophylactic one. 

justamy

He is over 60 I would say. The good thing is that he also does not take lymph glands unless the few he tests are cancerous...many older docs still do that regardless.

Tomboy

That is very good news! we like good nodes to be left alone! justamy, i started to feel bad a while ago, because i felt that my cautions might scare you, and that was not my intent at all. please do not worry ok? all of us here did it just fine, and i am sure you are as sturdy as us. i am glad that you found this particular thread, its pretty cool, well, because of the great women, and also all the revolving fresh headers elimar does at the top. sometimes i get on the computer and go there first, just to see what she's thinking.

Does anyone else tell any of their doc's about this website? you would think they would be interested to hear what patients are reeeally saying, but sadly, no. at least the ones ive talked to. sadly, only my LE therapist seems at all interested, and she promised she would ladies new to bc about us. one of my NP's even warned me away, saying there was bad info there. huh. but then, she is also the one who got mad at my pharmacy for leaving package inserts in the package!!! no wonder i am a little leary of the med proffession. its weird tho, because i have always admired what science and medicine and docs can do,...just.. not on ME!

justamy

KatheC: you didn't scare me but you did make me check out my surgeons credentials which is a good thing. I need to know that the guy removing my breasts is qualified to do the job. I didn't know what to check out or about my right to a Bmx if I feel it's necessary. You all are amazing women and we will all get through this together!

Tomboy

:}

KLJ

justamy, I have to weigh in here. My breast surgeon was a female over the age of 60. In fact I had to wait a couple of extra weeks for surgery because she was recovering from a hip replacement! I was given the choice of having one side done or both. There was nothing found on the right side in the mammo, MRI, or the needle guided biopsy but I still opted to have the BMX and I am grateful that I did. My insurance never even questioned it and I don't think by law they can dictate if you do one or both. Turns out from the pathology done on the right, non cancerous side, that had I not had a BMX I would have eventually needed the other side done. As the surgeon put it, "is was a very busy breast". That right there validated my decision. Please get a second opinion. As far as the husband goes I am sure he is just as much in shock as you are and will come to his senses and support whatever decision you make!