Apr 9, 2012 06:32AM - edited Apr 9, 2012 06:32AM by Janet_M
Posted on: Oct 29, 2011 01:21PM
I was diagnosed with DCIS in the right breast and IDC in the left, had bilateral lumpectomies and bilateral radiation. During radiation I found out that bilateral BC occurs in about 1% of the cases. The last I checked BC.org didn't have a mechanism for me to fully profile my cancer. Who is out there with the same experience?
Posts 31 - 60 (158 total)
Apr 9, 2012 06:32AM - edited Apr 9, 2012 06:32AM by Janet_M
Apr 9, 2012 06:55AM Janet_M wrote:
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 from women with bilateral breast cancer until this morning. What a relief!s
I too have received conflicting feedback about BBC. Boo307, you wrote that your rad tech 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 sorts of feedback. My surgeon was quite matter-of-fact, and my rad doc told me that it happens in about 10% of the cases, which sounds high to me. Recently I saw another Dr who said, 'Wow, your case is remarkeable'. I had no idea what she was talking about, but she told me it was highly unusual, Especially since I have no family history, and tested negative for the BRCA gene.
In my case the lumps were found a week apart. I'd been diagnosed with IDC on the right and had been given my course of treatment. Then we did an ultrasound on the left and found something that was 'probably insignificant' and the Dr called his colleague in for a look. They did a biopsy, which showed it to be a 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 Rad Onc says that bilateral radiation will give me a comparable rate of survival. I'; been conflicted (a huge understatement) for months but have chosen to go the BMX route. I'm haunted by the fact that the left tumour almost slipped by. And, so grateful that they found it.
However, I'm still confused as to 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 in'st a big deal, and other days where I think - what the heck? (I'm being polite. 'Heck' is not the word I used)
Id be interested in hearing what other Surgeons and Rad Onc had to say. Did they treat it as two separate cancers? Is BMX a logical route? Has anyone had rads only? I would love to hear from others in our siutation
Also - I read the article posted by Boo307. In summary it say,'Mean overall survival of patients with MBBC was significantly longer than thoe with SBBC.' But - wat are MBBC and SBBC. Am I missing something obvious?
Thank you, thank you. Janet
Apr 11, 2012 06:19PM Tesoro wrote:
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
Apr 11, 2012 06:24PM dogsandjogs wrote:
Boo, I had a new primary in the other breast 28 years later!!
My friend was told she had cancer in one breast. They did a lumpectomy and was scheduling her for rads. She had an MRI and they found two more cancers in the other breast! So she had to have a double mastectomy and is now on Arimidex.
Jun 14, 2012 03:48PM Laural wrote:
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.
Jul 1, 2012 12:11AM Beckers wrote:
I too have synchronous BC. I had bilat lumpectomy, but when I went to second rad onc was informed of dangers of bilat radiation and just not willing to go there so I am waiting for BMX date. I too am BRCA and P10 negative. Haunted by the fact that I got synchronous breast cancer at 45. Something has to have caused it so I will have BMX and 5 years of hormone therapy. Onco 19 so no chemo.
Jul 1, 2012 01:27AM Jafa wrote:
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.....
Jul 9, 2012 06:38PM flopsy wrote:
I had a BMX because my tumor was ILC with 5 big nodes in the axilla. I know that ILC tends to be bilat so I chose a BMX even though there was no known cancer in the other breast. That pathology showed 2 pre cancers of atypical ductal and lobular CA. Also had friend with same diagnosis as me and she only had uni mast. 18 months later she found another ILC in other breast. Now has had BMX and had rads on one first time and rads on other this time. Now she is doing well. Good luck with everything
Jul 10, 2012 02:48PM Moonflwr912 wrote:
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.....
Jul 10, 2012 11:13PM Beckers wrote:
Jafa, I met with RO and he informed me of the potential risks. Usually one breast has cancer and is radiated. He quoted statistics for having bilat RADS but I don't recall the numbers. Ultimately, I chose BMX, which I am waiting for now. I did a lot of research and soul searching and it was not an easy decision. All things considered, I am not comfortable with having the radiation at this time and feel fortunate that there were options. Good luck to you.
Jul 12, 2012 05:08AM gramma23 wrote:
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.
Jul 13, 2012 09:59PM Beckers wrote:
Carolyn, hopefully it is something other than cancer! However, although it is not so common, you can have a new cancer in the other breast. Better than if it metastasized for sure. Personally, I would go for second opinion. I would not just rely on what your doc is saying if he hasn't done the mammo, ultrasound, biopsy, etc. Not worth the chance and as we now know, timing is everything right? Be your own advocate I say. Best wishes.
Jul 13, 2012 11:58PM - edited Jul 13, 2012 11:58PM by jojo123
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.
Jul 14, 2012 12:08AM Beckers wrote:
Jojo, wow! Very good thing that you decided on BMX. I wanted that from the very start. I had biopsy results already on right side when they saw something on the left. I said no to the biopsy because I was sure I wanted BMX from the start. Surgeon talked me into biopsy for left side and it too was positive and I still let her convince me to have bilat lumpectomy. I am now scheduled for BMX Aug 9th. It has crossed my mind that they may find more. I felt immediate relief when I finally made decision for BMX. Something caused us to have synchronous breast cancer. It is rare. I had all genetic tests come back negative, I am 45....why did this happen...that will haunt me. So....off they will come!
Jul 16, 2012 05:25AM gramma23 wrote:
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!
Jul 16, 2012 11:03AM Beckers wrote:
Gramma23. If not mammo, maybe they can do MRI or ultrasound. I would think since you can feel the long lump, they would keep doing more testing to find the answer. It's such a shame you had the tough time healing in the past. My plastic surgeon has me increasing my protein, vitamin C and Zinc in prep for surgery to help with healing. Do keep the faith because it really is in God's hands. Where are you in Oklahoma. I moved to Ada, OK last summer but had to come back to Calif to keep my medical insurance. :(
Jul 17, 2012 05:14AM gramma23 wrote:
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.
Jul 17, 2012 02:03PM Beckers wrote:
I would definitely think there would be more than one in OKC. Is Tulsa too far to go? Most insurances will let you get 2nd opinion. A good doctor could make all the difference for you. I can't believe he didn't wear gloves! You pay $2,000+ per month???? No way I could do that. I'm upset that I have to go on COBRA next month and that's around $600. I wonder how many people don't make it because they can't afford these things. Ugh!
Jul 18, 2012 04:55AM gramma23 wrote:
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.
Jul 18, 2012 09:00AM Beckers wrote:
I know I would have to travel to OKC for treatment if I still lived in Ada. It may be a good thing I'm stuck in Calif. Your story helps to reaffirm my decision for BMX. I am nervous because it is in 3 weeks. I had the bilateral lumpectomies and when I met with RO and learned of the dangers of radiating my entire chest, I moved to plan B. I am so thankful he was honest with me about everything and that I am fortunate to have options.
I hope you can get a second opinion. I think it may give you a new perspective. It is no wonder you have lost faith in MDs after what you've been through. Maybe there are things you can do to help with healing. They have me eating high protein, vit C and Zinc supplements.
How discouraging that Medicare may not pay for bilateral. Maybe you might fit their criteria? Whatever the criteria is. Sounds like it will be better financially. I hope my COBRA payment is that per month and not twice a month! Yikes. My boss said to call Thursday, as she processed the paperwork yesterday.
August will be here before you know it. Maybe you would feel better if you look up surgeons in OKC online and make some calls to see if they take Medicare.
Jul 19, 2012 04:49AM gramma23 wrote:
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.
Jul 19, 2012 03:38PM peepgirl wrote:
I am new to this site and this is my first post. I found a lump in my left breast which turned out to be IDC. My surgeon requested that I have an MRI as my tissue is dense. Thank God she did as it revealed 3 small tumors in the right breast, which are IDC as well. I had bilateral mastectomy July 10th. Although initial review at time of surgery indicated sentinel nodes were clear, later exam showed 3 of 3 nodes on left are involved. Returning to surgery next week for removal of additional nodes on left. Apparently, even though both breasts have IDC, the cancer in the left is more aggressive. Surgeon has now also ordered CT and Bone Scan to see if the cancer has spread elsewhere. All of this testing and waiting for answers is emotionally draining, particularly since none of the previous tests had "good" results. I am anxious to have answers so I can move onto the next phase of treatment (radiation, chemo and meds). I am grateful to have found this board and people with like situations to share.
Jul 19, 2012 04:02PM Beckers wrote:
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!
Jul 20, 2012 04:04AM gramma23 wrote:
Peepgirl, I am sorry you are having all this stress but it sounds like you are in good hands, At least they are checking further to try to stop it all. I hope they have found it all and nothing else shows up. I know some have had chemo before surgery and they did not find the tumor afterward so hopefully once you get to that part it will get rid of anything that may be there.
Beckers I am glad to hear you will have a job once you finish. I did go back to work after 7 months off with surgery and chemo. I am old now and I need to not work but I just don't know how it go as far a s money. I know God will take care of us. I wish you the best with your surgery. I am also glad you did not have radiation so it should go well. My surgeon told me if I had to have a mastectomy I would have to have the tissue from the middle of my back and front where I was radiated removed. I don't know why he told me that because it was before I found the new lumps. I will have my mamo in Aug.
Jul 22, 2012 11:52AM peepgirl wrote:
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!
Jul 22, 2012 02:44PM Moonflwr912 wrote:
Peep, hang in there, it does get better. You will heal before you know it. Just in time for all the other stuff! Oh well, welcome to the club! beckers, Caroline, good luck to you on your surgeries.
Oct 26, 2012 10:27AM Wootie wrote:
I am so glad I found this sight! I was diagnosed in late May with multifocal IDC in left breast. (2 spots both slightly less than 1 cm). Wasn't discovered in mammgram, but in ultrasound. Dr recommended simple masectomy, but I elected for double. Good thing, because pathology report identified 1.5 cm unifocal bc in right breast. Scary part to me is lymph nodes weren't checked on right side. Left side had micrometatses in 2 of 4 lymph nodes, and pathology report said grade 2 and biopsey said grade 1. I too have questions about my staging. Dr staged me at 2b. Dr doesn't think I need radiation because margins were very clear on right side, and was grade 1. I've also heard how uncommon this diagnosis is, but I'm not sure what the difference is between bilateral/contralateral/ or synchro whatever (I just read on here)...
I will complete my last TAC treatment (#6) next week. Is everyone who's posted on here doing okay? Any suggestions for me? My Onc doesn't talk much either.....
Oct 26, 2012 09:58PM Beckers wrote:
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.
Nov 16, 2012 12:06PM keetmom wrote:
I was diagnosed with DCIS on left, chose bilateral masectomy due to a genetic disorder I have ended up finding breast cancer in my right breast also with was DCIS/ICD--and the left was also IDC....surgery was just last week....