Multicentric / Multifocal--impact on treatment?
Hope I'm not recreating a topic, but I didn't see any devoted to those of us with multifocal or multicentric cancers.
In December 2011, I had a unilateral lumpectomy to remove a known IDC and two known areas of DCIS. Post-surgery, I learned there were two additional areas of DCIS removed.
Poor margins led to a UMX in January 2012. Post-surgery, pathology found another IDC in another quadrant.
The more I think about this, the more it freaks me out. How rare is it to have so many tumors (6 in total)? My BS said its not unheard of, but not common. He also said it increases the likelihood of a chemo recommendation (I have my first onco appointment in 2 weeks). I also have a mammo in 2 weeks on my remaining (supposedly healthy) breast and can't stop wondering what might be in there that we don't know about. I almost wish I had done a BMX, although my BS strongly recommended against it.
Who else out there has faced multicentric or multifocal cancers? Do you mind sharing how it shaped your approach to treatment and your oncologist's recommendations?
Comments
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I had mutifocal tumors (3) id'd in initial mammogram, and biopsy showed both ductal and lobular features. Pathology after Mx ended up identifying IDC, ILC, DCIS and cribiform. There *was* another thread not too long ago that discussed this general subject, and it seemed like a lot of women had similar stories. It did not affect my doctors' recommended treatment plans at all.
However, I too wonder if I should have had a BMX even though the other breast was "clear"...may still elect to do so when I have reconstruction. I have heard too many stories about cancer that went undetected by mammography being found in pathology of prophylactic BMX...But my surgeon says this is purely anecdotal info...Personally, I think it may come down to peace of mind for me, as far as getting other breast removed... Best wishes to you!
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I chose a BMX, although my first surgeon was against it. The path report did show stage 0 in the "good" breast, in various locations, none of which had shown on the scans, `US, mammo, MRI, CT. My conclusion is that this stuff is treacherous and should be treated accordingly.
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Certainly studies of outcome suggest that multifocal sisters have similar outcome to univocal sisters with same stage disease years down the line. Regarding what to do about the "healthy" breast, I think it is reasonable to insist on MRI in this situation, especially if any of the original tumours went undetected on mammo. However the decision on BMX when MR looks ok depends on how much anxiety is going to torture you even knowing that MR looks ok. I have had same dilemma about whethere to have mx on my "healthy" breast. For the time being I am going for yearly MR but if there is any concern at all I will go for mx and immediate recon
BW -
Hi there. There is a multifocal thread under the IDC section. I am very interested in the numbers. I think we are a "rare" group!
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I also had multifocal areas (one IDC embedded in DCIS, all others DCIS). Because I had a mastectomy, the oncologist told me the only tumor that was taken into consideration for treatment was the IDC. It's size and characteristics was what was used for staging and treatment.
I was told it is common for there to be multiple sites of undetected DCIS in a breast. It is why radiation is used to clean up the breast after a lumpectomy.
Because none of the DCIS was anywhere near the chest wall and my nodes were clear, I did not have radiation. Four AC and herceptin were my treatment.I ended up having my other breast removed 6 months after the first because of a BIRADs 5 classified mammogram. All the slicing and dicing of that breast did not find any cancer. Only typical benign changes of an aging breast.
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I had 7 invasive tumors in three quadrants of my breast and extensive DCIS. I was told by my BS that for staging they only count the largest tumor. However, my MO counts the total tumor load. Recent studies show that women with multifocal/multicentric cancer have a higher recurrence rate than women with unifocal cancer if you count just the largest tumor, but that the difference in prognosis is removed if you count the total tumor load.
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Another one here.
I had 3 different size IDCs in the middle of 14 cm DCIS. My onc. went by the largest IDC to determine treatment plan, but I don't think there would be any other choice. My cancer is hormone negative and HER2+, plus relatively young age = the most aggressive chemo and Herceptin. I really like to keep my other breast but as ladies said - it depends on your anxiety level.
Good luck.
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Well, I think I probably can join this group.....although not sure at this point. I was diagnosed in August with two tumors, mixed IDC/DCIS. The two tumors were large enough, approximately 4 cm total, that my surgeons/oncologists recommended neoadjuvant chemotherapy. These tumors have responded well, but I was planning on a mastectomy anyway and I honestly think my surgeons felt that was best for my situation. In addition, I am small-breasted. I underwent 6 cycles of T/C because of my oncotype score, and finished up 1/16. On February 1st, post chemo/pre surgical MRI revealed two additional areas of enhancement. WTF - I just finished chemotherapy and while undergoing chemotherapy I grew two new additional areas of cancer??? These are seen in the 6 and 9 o'clock position, whereas the other two are in the 12 o'clock position. Not doing biopsy on these because I am having a mastectomy in two weeks. These could be some sort of false-positive on MRI, although the radiologists sure thought these were suspicious. My surgeon does not think they are anything......I think he is just saying this because he doesn't want me to worry.....I am so concerned about this. So, if this is another cancer, I will have four different areas in the same breast with cancer. I was planning a UMX, but after this new, possible cancer discovery, I WANT THEM BOTH OFF. If my one little breast can make this much multicentric, multi-focal cancer, the other can do the same.....plus, Im only 43-years-old. I have remained so positive since my diagnosis, but this new, possible malignant finding in the same breast has me thinking I'm doomed.....which is so not me
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Thank you everyone for sharing your experience and knowledge. It's so true that the amount of anxiety we can tolerate varies from person to person. Heck, it even varies within me! Some days, I feel fine about having spared the "clean" breast, some days I feel like it's the enemy.
Annicemd--That's a very good idea about insisting on an MRI on the "good' breast. I'll do that.
jrgolomb--I'll come on over to the thread on the IDC section--thanks.
wildrumara--I'm so sorry for what you've been through. What a kick in the pants. I hope the surgery brings some peace of mind.
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Kadia, I don't think having multifocal IDC changed things much for me except that I had a mastectomy with reconstruction instead of a lumpectomy. The tumors were in the same quadrant but spread out enough so that I wouldn't get a good cosmetic result with lumpectomy. I was staged off the main tumor. A low oncotype dx test result meant no chemo for me. I recently decided to go back and have a mastectomy and reconstruction on the contralateral side but that decision was related to a family history of bc and having dense breast tissue not to the fact that I was multifocal. From the research I have done there is no consensus about a woman being more likely to have a recurrence if she has multifocal bc. Based on the journal articles I have read a woman is more likely to be node positive with a multifocal diagnosis but after that- the recurrence statistics are based on the staging of the main tumor, the node results and histology (ER, PR, HER2, etc). For example see the abstract below...
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Besa, interesting link, led to several other articles, too. Thanks.
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Multicentric - all quadrants, innumerable tumors, both ILC and IDC.
Mammogram was clean; insisted on a sonogram (gut instinct), which led to needle biopsy of the three largest tumors (all around 1cm, IIRC), which led to MRI -- surgeon said my whole breast "lit up like a Christmas tree." With that news, I opted for BMX, and my surgeon heartily concurred. The post-BMX pathology on the other breast showed that it was beginning to thicken and change, so I believe I called that one right.
My nodes were negative, and my margins were clean. I was NED for three years after BMX.
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Hi Kadia
I had at least 3 IDC lesions in different quadrants so required a mastectomy. A had an MRI on the good side prior to surgery, which then led to a biopsy….results were good. BS recommended mastectomy on both sides regardless, but I decided to only do the cancer side. So I went ahead with a uni mx. My onc said that only the largest lesion determines treatment (and not a combination of all tumours). So I didn't need chemo or rads. One year later, I had the 'good side' removed and had reconstruction on both sides. I'm more than 2 years out from initial diagnosis and feel good about my choices.
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I had multifocal IDC 2cm and 1.5cm and had a lumpectomy on my BS recommendation as he could remove both tumours in one inciscion - there was 1.5 cm in between. I did have a close margin of 1mm from the chest wall and an involved subutaneous margin as the biggest tumour ws just below my skin, he didn't recommend a mastectomy with my path as he thought the rads would mop up any stray cells.
I also has an ALND with the lumpectomy as my BS thought a sentinal node biopsy may be inaccurate, had pos nodes so maybe he went with his gut feeling.
None of medical team has discussed the multifocal aspect of my BC, I scored the works being Triple pos anyway.
I have just had my 3 yr mammos and ultrasounds - all clear, very fit And healthy and feeling fab, no regrets about just the lumpectomy or any other treatment. -
I had two IDC tumors, in the my right breast. Both were in different quadrants. I also had two tumors that were DCIS. All four tumors had different pathologies:
1) IDC tumor #1, 0.8 cm, lower left quadrant, 48% er +, 46% pr +, HER2-. oncotype score = 16
2) IDC tumor #2, 1.2 ccm, upper left quadrant, 99% er +, 98 % er +, HER2-, oncotype score = 8
3) DCIS tumor #1, in upper right quadrant was high grade, with possible microinvasion
4) DSIC tumor #2, in upper left quadrant, low to medium grade.
There were also two small areas with LCIS (2mm and 3mm).
My diagnosis was three staged. I had a mammogram and biopsy of DCIS #1. That led to surgery. I thought I was having a lumpectomy and SNB, but woke up with an additional scar. It turns out my surgeon felt a dimple and decided to remove what ever was causing the retraction. That turned out to be IDC #1. My onc ordered the oncotype test and chemo was not recommended. The radiation onc I saw asked me to have an MRI before beginning radiation. That led to another round of biopsies and the discovery of IDC #2. The final pathology report after my BMX showed DCIS #2. There were areas of atypical cells (ADH and ALH) in the left breast.
My onc recommended chemo, based on the size on IDC #2. I insisted on oncotype test even though my onc said he had never heard of this being done. When we received the score, he said I didn't need chemo. I agreed after I figured out the odds that either tumor would recur. It never made sense to me to base treatment on the largest tumor, as the smaller one was more aggressive. I think you do have to look at the total picture - my onc said that made more sense.
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I posted this here also: http://community.breastcancer.org/forum/96/topic/732309?page=5#post_2858810
I originally felt a lump, and after core biopsy testing, was diagnosed with IDC. I was scheduled to have a lumpectomy, but my BS requested an MRI beforehand.
Unfortunately the MRI identified several potential suspicious-looking areas. I made the very difficult decision to have a mastectomy, without knowing 100% that those areas were cancerous.
Turned out to be the right decision. The lump I had originally felt was the largest of three IDC tumours. The tumours had a spread of 55mm, and they measured 22mm, 14mm and 4mm.
The tumours were removed completely, with clear margins. Sixteen lymph nodes were also removed, all clear of cancer.My BS said that the multifocal nature of my cancer could potentially mean that I will need radiation therapy on the chest wall. But when I met my MO, he was not concerned about the number of tumours. Staging was based on the size of the largest tumour, and the lymph node status.
Apparently chemotherapy and hormone treatments should be the most beneficial for me. Radiation will probably not be necessary for me because the margins and lymph nodes were clear. But I will see what happens further down the track...
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I went into my UMX knowing of one IDC tumor and an "Area of Concern". I had been offered a lumpectomy but opted for removal. The path came back with 9 other tumors/tumorlets, one near my chest wall. It was a mix of IDC and I had micromets in 2 of the 3 nodes removed. My onctype came back a 7 for the largest and 10 in general. I finish rads on Monday. I will argue forever with my BS re: the usefullness of MRIs for dense breasts women. He still says too many false positives and I say not in my case!
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raising my hand with multifocal for sure (two tiny tumors) and four other suspicious masses. All tiny. If any of those four are cancer then I’m multicentric too. Planned BMx August 20 with expanders. Hadn’t thought I would need chemo or radiation but from what I read that’s not so sure now. Trying not to worry but definitely seeking realistic information. Wonder why my surgery is a full 7 weeks after Dx.
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I am not sure my 2 tumors were still classified as multifocal after pathology confirmed the were 2 totally separate tumors they were multicentric. My tumor board agreed I should have a mastectomy. As far as my oncologist he is treating me with hormone therapy no difference between idc and ilc.
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Hi, They had four multi centric masses at the time of my diagnosis, which wasn’t Armageddon apparently. Mine were however at time of surgery found to be connected by a single strand so it became an 11.5 cm mass and I still have a good outlook. Make sure to ask your doctor about Onco testing and how they treat multiple tumors... That could be material to any case with multiple tumors (assuming yours is ER+)
If you need to chat, please reach out. I’m sorry about your diagnosis but its a detour not a road block. I know you’re frightened but believe it or not ... you really can do this and you will soon be on the other side of this experience. I promise... there is life after cancer and multiple masses isn’t horrible... it’s just one of those goofy things that cancer can do and it won’t be anything unusual to your doctors. You’re in the right place because you’re getting treated.
We’ll be survivors together, ok???
I’ll pray for you. It’s going to be ok.
Susan
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Susan99, thank you so much for your words and encouragement! We're so glad you've joined our community, and we hope you find this to be a supportive place!
The Mods
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thank you, Susan! That is so reassuring to hear that. And thank you for the prayers. August 20 is the big day. I’m in Nashville TN so there are great doctors here. This week I took leave from work early so I can drink green juice, eat right, rest, yoga, etc
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and thank you, Meow! I thought multifocal was located in same quadrant and multicentric in different quadrants.....maybe there’s more to it. And I’m reading that ILC can be different. It doesn’t respond to tamo as well. And it chooses gastric, ureter, ovaries instead of lung liver bones... (gross generalizations).
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Yes multicentric refers to quadrants. I had 2 tumors in 2 different quadrants. The multifocal as I understand it would be if the 2 tumors were connected. Mine were not connected they were 4cm apart with no abnormality inbetween.
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you’re welcome Ashweb901!!
Also - regarding recovery - I was pleasantly surprised. I think I mentioned I did the nipple sparing - skin saving procedure with immediate reconstruction. I was prepared for the worst and really not down that long at all, and the pain was manageable. First few days were crazy though. I couldn’t even sit up on my own. I put a foot stool next to my bed so I could get in and out on my own....
But it went by so quickly I barely remember! -
Thank you for the reassurance. I’ve had two c-sections and a tummy tuck (hernia repair on which I paid extra), and hysterectomy. Each time I’ve gotten better at resting. So I hope it won’t be horrific, but at least at first there’s hospital-grade pain meds!
I have a trip planned at week 5.5 to chill with my sister in law at a Ranch near Santa Fe, NM, so i have that to look forward to.
Have they told you when you start radiation? Originally i wouldn’t be having that but maybe with the extra tumors....can they do radiation with tissue expanders in? Inquiring minds..
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