Who else had Bilateral BC at time of diagnosis?

I'm a little late jumping onto this thread - but so glad I found it. I was diagnosed last year, have gone through chemo, resection of a margin, am about to start rads, and have not heard personal stories of women with bilateral breast cancer until this morning. What a relief!

Boo307 - You said that your radiologist only sees one case of bilateral rads a year. And Kathy 1925, you said that your team was very matter-of-fact. I've been getting the same kind of conflicting feedback because my doctors were quite matter-of-fact as well, though sympathetic. My Rad Onc told me it happens 10% of the time which sounds high to me. And like I said, I haven't met anyone else with this diagnosis until just now.

In my case the lumps were found several weeks apart. I'd been diagnosed on the right side with IDC and had been told my course of treatment. Then we did an ultrasound on the left side and the Dr found something that was 'probably insignificant' and called his colleague in to take a look. Just to be certain, they did a biopsy, which turned out to be similar tumour. So, I had bilateral lumpectomies followed by chemo.

My surgeon recommended a BMX as I am at 'slightly higher risk' of recurrence. My Radiology Oncologist says that bilateral radiation will give me a comparable rate of survival. I've been conflicted (a huge understatement) for months but have chosen to go the BMX route. I'm haunted by the fact that they almost didn't find the left tumour. But I'm so grateful that they did. 

However I'm still confused about whether or not I've chosen the right course of treatment. 'Slightly higher risk' isn't enough information for me, and the numbers keep changing depending on who I talk to. Is a BMX too drastic? There are some days where I think that BBC isn't a big deal, and it isn't treated like a big deal, and other days where I think - what the heck? (I'm trying to be polite. 'Heck' was not the word I used) 

Recently I saw another Dr who said, 'Wow, your case is remarkable'. I had no idea what she was talking about - as I was used to the matter-of-fact treatment. But she told me it was highly unusual.  Especially since I have no family history, and tested negative for the BRCA.

I'd be interested in hearing what other surgeons had to say. Do they treat it as two separate cancers? And is a BMX a logical route. Also, I read the article supplied by Boo307. In summary, it says.

Mean overall survival of patients with MBBC was significantly longer than those with SBBC (30.4 months versus 19.2 months; P = 0.045).

What are ‘MBBC’ and ‘SBBC’?

Thanks, Janet 

Hi Janet_M, I just thought I'd comment. I was diagnosed in November with first a small IDC in my left breast, then a large ILC in my right breast. The ILC required a mastectomy but I could have opted for a lumpectomy in the left. My dr. said that there was a reason that my breasts were producing cancer and there was nothing to say that if I chose just a lumpectomy, that my breast wouldn't just produce another one. I felt like these cancers can be very aggressive and I would feel better if I was aggressive too. I went ahead and had the BMX, and although I would prefer not to have had cancer in the first place, I feel good about being pro-active and not having to worry if I should have done more. BMX has it's flaws and it's all a lot to process, but I just try to work through it one event at a time. I guess that's all any of us can do. I wasn't recommended for chemo but am on Tamoxifen. I'm also just finishing up radiation on my right side.

As for the other abbreviations, I can't answer that either - sorry. I hope all goes well for you.

Hugs and Wishes

I had a diagnosed IDC in left breast with ILC found on the right (1 cm. tumor) after BMX (surgeon was very reluctant to do BMX as he did not want to remove a healthy breast). I have also had acute leukemia as a young adult and secondary MDS due to the treatments for the initial leukemia. I have no family history of breast or blood cancers. The hardest part about this journey has been trying to get a medical team that works together. I have 8 specialists and none of them communicate with the other. 

Hi all, I've just had trouble filling in the diagnosis part of my history because of the bilateral and here you all are telling my why!

I found a lump that was diagnosed as a "fatty cyst" and ignored, and a month later found a diff sort of lump on the other side that was "probably nothing" but they did do a biopsy and found DCIS. When taking the DCIS out the surgeon offered to take out the other lump (that I was now worried about) and it turned out to be IDC (that upset them all) Neither showed up on Mammogram. I had lumpectomies and clear lymp nodes, one more round of chemo and then rads and hormone (and herceptin triple+), waiting on BRCA status.

Becks you talk about the "dangers of bilat radiation" better tell me more? 

I didn't realise until now that bilat was that unusual.....

I am one of those that found the IDC in my left breast during a BMX for Dcis in my right breast. Due to family history, I said if I was going to have surgery on one it would be both. They said I didn't have to do that, but didn't try to talk me out of it, and we were all relived when the IDC was found that we had gone that route. They did say it was unusual. There were no signs of the IDC on either the mammos, or the ultrasound. I can't do MRI due to a pacemaker. I am BRACA negative. quick question, did any of you get zits on both sides of your face too? I always knew if I got one on one side that I would probably have one on the other side the next day. Just wondering.....

I had BC in Left breast 2008. Lump,chemo radiation and now I found unusual lump/lumps in right breast. My onc. says it is ligaments. I had researched ligaments in breast and the only thing I find in that area is blood vessels and lymph nodes. I had large lump and the sentinel node was the same size as tumor and had 3 nodes besides that was cancerous. I do go for my mammogram in Aug. and have had them regularly since surgery but no one had found anything. I am worried but no one else is because it is rare to have mets in second breast they say. What if it is not mets but a new one? Onc just shuts up. I was surprised to read so many here had both sides and now I think this may not be so rare. I wonder though why the chemo did not stop second if that is what it is. I guess we will see. This one does not feel like the first though.

Carolyn

My mammogram showed 1 spot on the left.  The US showed 3 spots, the original 2 were papilomas.  The 3rd was a .7cm tumor. MRI showed 2 more spots on left and small one on right.  Biopsy on left showed 1 was .5cm tumor.  Right was unable to be biopsied.  They tried but could not get a good picture, said to come back in 6 months.  So I had 2 positive cancers on left and probably just a papiloma on right.  BS told me she did not usually like to remove healthy breasts but she would do what ever I wanted.  I decided to have BMX.  I didn't want to do this again later.  Day of surgery preliminary pathology said 4 nodes on left and 3 on right were clear.  Final path said left side had the before mentioned 2 tumors and 4 clear lymph nodes.  The right side had a 2.5 cm tumor and 2 of 4 lymph nodes were positive.  At that point I saw the onc for the first time.  She knew my case from the tumor board.  I asked if it was wierd that the previously undetected one on the right was bigger than the 2 on the left put together and she said it was very unusual in fact she had never seen this before.  She said they went back and looked at MRI and that even knowing where to look it wasn't there.  The small spot they had seen turned out to be nothing.  She said that it may have been there for a long while and because it luckily was a grade 1 the cancer cells had looked like normal ones.  Thank God I decided to have the MX on the right.  I since had 13 more lymph nodes removed on the right and they were are clear.  I start chemo on August 1, don't know about radiation yet.  It is scary that nothing on my right side showed on the mammogram, US or MRI.

Thanks for your reply Beckers. I do have my mamo scheduled. I am afraid if I have to have more surgery because my blood count is so low still from having chemo almost 4 years ago. I am on Procrit now and have been for 3 yrs. It just won't come up and stay up even with blood transfusion. I guess I will cross that bridge when I come to it. I worry why the red blood count won't come up. I know my onc does the blood test every so often for cancer but I have not seen results but I think he would tell me if it was not normal. Still I think about getting the test report when I know it has been done. Usually when I get some of those reports I have more questions than answers.

If I had to have more surgery on the area I had radiation it will not heal. I am not sure how much radiation was in contact with the area where I feel the lump or lumps. It is more like a long line than a round lump like the other was. They did a biopsy on a lump about a year after radiation on the radiated breast and it took a year and lots of infection to get over that. The lump they biopsied was a fat necrosis but it had to be done and I have others in that breast. I wish I had both removed but then I have heard that people with breasts completely removed still have problems but at least I would not have had radiation.

I am not too worried but what concerns with me is all the cancer going to show on mamo? since I was Her2+ it could be any place in my body and we can't know for sure. I try not to worry. God's will be done!

Beckers, I live close to OKC. I do have faith but not in doctors anymore just God. I am so tired of how the price of medical has gone up this year. I went from paying $2095. for Procrit in Jan. to $2925. in May. I still owe for May. I am working on it but I go every month. I will be on Medicare in Aug so maybe it will not be so much and of course everything they do cost more money. I know money should not be the thing I worry about the most but it sure helps and I want to stop working so bad. I imagine if the mamo shows something they will do a biopsy but the choice of doctors I have been given I don't care for. The one that did my first one is teaching now and not practicing.The one that did a biopsy after radiation did not even wear gloves when he was checking the infection. I was shocked. That may be why it was infected. He did have gloves when he did the incision though. A needle biopsy would not work so they had to cut in and get a chunk and send but it was a fat necrosis like the onc thought. I wish he could still be around. I may change onc. but then I am sure they are all expensive. I had to go over to Mercy for my MRI because that was the only place that did breast MRI they said when I had my last surgery. I know this is 4 yeaqrs later but wouldn't you think in a place as large as OKC it would have more than one! Anyway I guess what will be will be. I just dread all that again. I know everything on the Internet is not accurate but makes a person start wondering how much is missed.

Carolyn

Beckers, I don't pay that myself. My insurance pays but I have to pay 15% of the total bill plus I pay $683. a month for insurance. Right now I am looking at over $600. for my May bill but that was 2 visits, one at the beginning and one the last day. I go every 4 weeks for blood test port flush every 2 months and a Procrit shot to keep my red blood count up to 10 or above. Never more than 11 but the onc told me if we had to we can get the shot every other month to satisfy medicare because they want your hemoglobin down below 10. A woman count is supposed to be 12 or above. A man's is 14 or above so if Medicare is saying no shot until you drop below 10, I will have to go less. I am just wondering what will change when I get into Aug since that is when I am on Medicare. My husband and myself will still have to pay $428. a month for secondary insurance. He is already on Medicare. I was supposed to have my mamo this month but Medicare will pay for the full thing in August so I am going to wait until then, my onc didn't want me to but he does not pay my bills so I have to do this. If he thought it was that important he should have said you must get it right away. My birthday is in Aug. so at least it will be something I do every year for my birthday.

I have not been to the surgeon since this last biopsy but I did find out you do not want to break the skin on a radiated area ever. It will not heal. It took a full year for this biopsy to heal and stuff coming out of it. I do think it was the fat necrosis breaking down and coming out because the lump is not there anymore. I have several in that breast and I will just not worry about it because it is probably fat necrosis. It is the other side that worries me. I hope he is right that it is not cancer. I just wish I had double mast. My friend at church could only have one removed even though she has a lump close to the ribs in her other one. She had lymphoma too but since she was on Medicare they would not okay it. I hate insurance but you can't afford to pay the full amount for the surgery yourself.

Tulsa is a little far for me to go although my friend did go up there to have her surgery. Her son lives there though and she had someone to take care of her. She did not like our doc. here. I liked him fine but now he is just teaching and he is older. I may check out Mercy hospital before I do anything else. They have the Cancer Center of America there but I have heard bad things about that. I think it was mostly cost that was bad. I am sure they are all like that though.

I thought Cobra was higher than that but have not had to do that so I have just heard about it. Good luck to you on your insurance. My sister lives in Konawa near Ada and she had paintings in Ada but I think they closed that gallery. She shows all around this area I guess and is really pretty good but she don't stay in touch so I am not real sure. Our brother died from cancer in 2009. This is not family thing though because as far as I know only me and my brother have had cancer in the family.

Carolyn

Beckers did you not have radiation at all? I always wished I had listened to my self when I said no radiation and everyone one said I had to. Well you do not have to. I think the bi mas is a better idea. Why save them if it is just going to come back! I know a woman in Florida that had both removed and reconstruction and she is doing well. I was ER-/PR- but Her 2 + only and that is why I have to keep the port indefinately. I also had nodes with cancer.

I hope the Cobra is not going to be too expensive for you. How long can you keep Cobra? I was thinking 18 months but now it may be longer. Things have changed since I looked into it. We have insurance through my husbands Union. He has been on Medicare for a while and had shoulder surgery and it was not too bad although there are some things they will not pay for. I don't understand Medicares thinking as to not paying for some things that are necessary and I tried to explain it to them but they still would not pay. You have a right to try but more than likely unless you get a lawyer you will not get it changed. It was not that expensive so a lawyer would cost more. Just paid it but if it had been something big a person would have to.

As for the protein, that is what the Procrit is and I eat well but no matter what I try it makes no difference. I also make sure I have plenty of vit C because that keeps the UTIs away. The only thing that has made a difference is when I am on cortisone for arthritis it brings my count up. I have plenty of iron but my red blood cells are too small and not enough oxygen in them but they have never done tests to see if it is coming out of marrow that way or if I am losing them somehow.

I wish you the best and yes Aug is just around the corner. I am giving my notice at work then. I will make too much money if I work much longer and I will lose my Social Security so I have to quit. I don't make enough money working to make up for the SS. I am also so tired to keep working. I do have another surgeon in mind but the one I don't like is in the same office and I am afraid for some reason mine would be on vacation and I would end up with him. I can't find a woman surgeon. I am not always fond of women doc though. They tend to be rougher than men. Do you have a good surgeon? I will keep looking but no one has told me about anyone else and I guess I won't find one until it is time to have a surgery. I am hoping that is never but we will see.

Carolyn

Carolyn- I did not have radiation. I had bilateral lumpectomies and was planning to. The rad oncologist was honest and I understood the risks, as I was having both sides radiated so I chose to get 2nd opinion with breast surgeon and now moving to have BMX. I feel happy with my choice. But, nervous. Also, pretty sure Cobra is for 18 mos. They are holding my job and I will get benefits reinstated immediately when I return to work full time.



Peepgirl- welcome. I'm sorry you have to be here but it is a great place for information and support. All of these tests are emotionally draining. How are you feeling after surgery? Bilateral or synchronous breast cancer is rare. They will treat you according to your left side. I wish you peace as you go through this. I think the stage you are at may possibly be one of the hardest emotionally. Having a game plan and knowing what you are dealing with is somewhat of a relief. Hang in there!

Rebecca and Carolyn,



Thank you for your kind words of support and encouragement. I am now almost 2 weeks out from the mastectomies and initial reconstruction, and physically doing well. I am grateful the doctors are being thorough but will also feel better when there is a game plan in place.



I wish you both the best with your procedures in August!



Peepgirl

Thank you moonflwr!

Welcome Wootie. When was your surgery? Do you have final pathology? You will get a lot of new information pertaining to your cancer cells that will help paint a picture. You are right, bilateral, or synchronous breast cancer is rare. Contralateral just means "other side." They typically treat based on the worst cancer. Maybe with this situation being unusual and not having SNB on right, you should seek second opinion. It is just such a good thing you opted for bilateral (double) mastectomy. Keep us posted.