multifocal cancer
I am amazed at how little info there is out there about the multifocal nature of cancer. I was surprised they treated me based on the size of the largest tumor and what the positive node was since I had IDC and two sub types of cancer. I am posting this again because the more I read about the characteristics of this type of cancer, the more I am convinced there is the need to "talk" about it. I wonder, does the multifocal nature change the way I should be treated? At any rate, it would be nice to get a BC.org sense of numbers on who is indeed "considered" multifocal.
Jess
Dx 10/16/2008, IDC, 1cm, Stage II, Grade 1, 1/17 nodes, ER+/PR+, HER2-
Comments
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Hi Jess,
I was treated for multi-focal IDC. After a lumpectomy revealed involved margins, and my sentinel node was positive, given it was multifocal (higher risk of at least more in that quadrant, who knows about the others) a mastectomy was advised which I underwent with axillary dissection. Then I went on to have chemotherapy (AC then Taxotere). I also elected to have radiation (PMRT) given the positive node, to diminish the chance of local recurrence and to increase my survival stats. It was a choice I was (am) comfortable with.
My signature is much like yours except the tumor grade was II. I've taken hormonals since and remains stable.
I wish you well in your choices of treatment and beyond.
Tender
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Hi
I had 3 areas of the breast involved - one was a lymph node and one was 3 cm. (they never talked about the other one so i guess it wasn't much.) I was stage llB. I had chemo first (4 A/C) then a mastectomy, then 2 more chemo (A/C - allergic to Taxotere) then rads. That was 6 years ago and so far, so good!
Good luck with your treatments.
Barb
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It has not been suggested I under go rad tx. From what i remember, I was in a state of shock during initial dx, was told the taxotere has shown such promise and good results, the radiation is not necessary. Now I wonder...... Thanks for your input. I'd love to hear from more.
Tender is our Might...did you have reconstruction and then rads or no reconstruction????
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Hi, Jess ~ I had multicentric bc. Originally, they though I only had 1 lesion, but when the pathology from my lumpectomy and SNB said that the bc found in my positive node didn't totally match the tumor cells, I went for a second opinion, and a new (better) MRI came up with 2 additional lesions. I was told the standard of care for multicentric bc is a mastectomy, and thank God that's what I did (with immediate Diep recon), because the path from that surgery found a 4th microscopic spot. Mine was also a combination of ductal & lobular.
I did 4 rounds of TC and I also did RT, which was recommended based on a 1mm unoriented margin on that tiny 4th spec they didn't know was there, as well as extracapsular extension in the lymph node. I also learned in questioning the recommendation for rads, that RT w/a mast is the newer, more aggressive approach that some institutions are now starting to follow, especially if there are any issues like positive nodes or minimal margins.
Hope this info' helps you with whatever you're trying to figure out ~ Deanna
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Well I am trying to figure out why my doc didn't suggest RT because of the node....I will have to ask about that again. I have a tissue exapnder in and now am nervous I didn't go the correct route.
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Dear Jess,
To answer your question, I had delayed reconstruction with TE/cohesive gel implant five years after my treatments. While one PS advised against TE/I, another university center PS agreed to try, as my skin showed few signs of radiation damage. I am now 3 years out without problem.
Please realize the issue of PMRT (post mastectomy radiation therapy) in women with 1-3 nodes is widely debated as no definitive prospective study has ever been completed or had enough participants to bring a reasoned answer forward. Thus as a patient, you will hear strong opinions one way or the other depending on the specialist's view. This may even apply to why your own doctor does or does not suggest PMRT.
The main referenced association guidelines on PMRT are available at the National Comprehensive Cancer Network (NCCN), the American College of Radiation Oncology and American Society of Radiation Oncology, amoungst others. Beyond these guidelines are valuable retrospective reviews, meta-analysis, and individual large institutional reports from which much insight may be gleaned to grasp the depth of the question: does post mastectomy radiation truly aid in reduction of local recurrence (best evidence points resoundingly to "yes") and does it increase absolute (individual) survival (best evidence, in my view, points to yes for those with fewer nodes surprisingly). This is an incredibly individual decision with your doctor. Here is one well-respected radiation oncologist's recent writings on this matter:
One to Three Versus Four or More Positive Nodes and Postmastectomy Radiotherapy: Time to End the DebateLawrence B. Marks, Jing Zeng, Leonard R. ProsnitzDepartment of Radiation Oncology, Duke University Medical Center, Durham, NC
http://jco.ascopubs.org/cgi/content/full/26/13/2075
Lastly, you ask about feasibility with tissue expander in place, so I offer you Monica Morrow and colleagues recent abstract from Fox Chase Cancer Center, Philadelphia for review should you elect PMRT:
Int J Radiat Oncol Biol Phys. 2008 Sep 25. [Epub ahead of print]
Postmastectomy Chest Wall Radiation to A Temporary Tissue Expander or Permanent Breast Implant-Is There A Difference in Complication Rates?Anderson PR, Freedman G, Nicolaou N, Sharma N, Li T, Topham N, Morrow M.Department of Radiation Oncology, Fox Chase Cancer Center, Philadelphia, PA.PURPOSE: The purpose of this study was to evaluate the likelihood of complications and cosmetic results among breast cancer patients who underwent modified radical mastectomy (MRM) and breast reconstruction followed by radiation therapy (RT) to either a temporary tissue expander (TTE) or permanent breast implant (PI). METHODS AND MATERIALS: Records were reviewed of 74 patients with breast cancer who underwent MRM followed by breast reconstruction and RT. Reconstruction consisted of a TTE usually followed by exchange to a PI. RT was delivered to the TTE in 62 patients and to the PI in 12 patients. Dose to the reconstructed chest wall was 50 Gy. Median follow-up was 48 months. The primary end point was the incidence of complications involving the reconstruction. RESULTS: There was no significant difference in the rate of major complications in the PI group (0%) vs. 4.8% in the TTE group. No patients lost the reconstruction in the PI group. Three patients lost the reconstruction in the TTE group. There were excellent/good cosmetic scores in 90% of the TTE group and 80% of the PI group (p = 0.22). On multivariate regression models, the type of reconstruction irradiated had no statistically significant impact on complication rates. CONCLUSIONS: Patients treated with breast reconstruction and RT can experience low rates of major complications. We demonstrate no significant difference in the overall rate of major or minor complications between the TTE and PI groups. Postmastectomy RT to either the TTE or the PI should be considered as acceptable treatment options in all eligible patients.
My best to you in a tremendously individual based decision.
Tender
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I had lumpectomy with unclear margins and 9+ nodes. Went back to do a mast and discovered that my breast was full of DCIS and IDC. Some spots were as big as the original tumor but were not seen on any scans. I had FEC and TX followed by radiation. Chose to have the other breast removed and oomph. Am now on Arimidex. Two years out from dx.
Edited to add: I should mention that the radiation I received was quite extensive. They radiated all the nodes in my chest as they assumed that the cancer was probably there as it was so extensive in the breast.
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Thank you so much for everyone's input. I need this. I am still considered in the gray area for radiation.....one node, and a mast...but no rads....Everywhere I look there is always another opinion and another path to go. I am going to go with my gut-so far it was my gut that told me to push a deeper investigation into my breast chagnes........
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Yup.....still in the grey area.. Can't wait to talk to my onc.
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I know it's hard, Jess. You're doing the right thing by pushing your self to think about it all. Your oncologist should be of great help.Wishing you well,Tender
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Help, I have multi focal DIC and just had a mastectomy of my left breast and twenty three lymph nodes removed. My pathology reports are all negative, waiting on genetic testing. I want to have DEIP surgery . Has anyone out there done this surgery?
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i have heard great responses/reactions to DIEP surgery. If you get on reconstruction thread, lots of ladies talk about that kind of surgery.
Thanks Tender.
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jrg (jess) trust your gut.
Miss chatting with you
flash
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Hey Flash! Thanks. Yeah, I am chatting about once or twice a week. Hope all is well.
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Just want to know how the other multifocal folk are doing???
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I had multifocal, multicentric IDC and DCIS in right breast, and multifocal DCIS in left breast, but thankfully I was node-neg. I had a bilat mastectomy, chemo and Herceptin. I'm now on Arimidex. If I had had one positive node, my breast surgeon and my onc. both said they would've recommended radiation.
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How is the Arimidex? I've heard pretty good results about that. I will probably be on tamoxifen and then AIs once meno kicks in.
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I had multifocal, multicentric IDC and DCIS and LCIS in my left breast. I had a bilat mastectomy due to family history concerns and my right breast was cancer free. Thankfully they removed 2 sentinal nodes which were both neg. I was able to have the oncotype test done (15) which showed a 10% reoccurance if I take Tamoxifen. This meant that Chemo would not improve my chances of reoccurance so no Chemo. I just went to my radiologist today and was expecting to need Rads but he said because my margins were clear, no nodes positive and I had a mastectomy that radiation wasn't needed either. I will start Tamoxifen in a few days. I hope this helps. I could not have asked for a better treatment, I just hope it is enough to keep me cancer free. I feel in my heart that this is the right treatment for me. God Bless you and stay strong.
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Thank you that helps. I had one tumor sort of close to my chest, so I guess it's rads for me.
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I had 6 masses and 5 were primary (multifocal). I had to have a mastectomy in the affected breast and I chose to go ahead and have the unaffected removed as well (prophylactic). I do have to have chemotherapy but do not have to have radiation because the margins are clear and my nodes are clear. I do have to have chemo because it was multifocal, because I am young and because two of the masses were larger in size (2.0 x 1.0. 1.5 cm and 1. 0 x 1.0 x 1.5cm). Paula
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Yes, I had chemo because one of my nodes was positive and now I am having rads because of the multifocal nature of the cancer.
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(hi Jess!)
I had a multifocal ILC and had first a lumpectomy of a 1.7 cm mass, then a mastectomy. I chose to have the cancer free breast removed as well (prophylactic). At least 10 other masses were found in the infected breast and all were quite small, except the largest which was about 1cm. My Onc said the standard is not to add the masses of the two largest lumps when there is more than 1 surgery, but he said it is unknown if they were the same lump initially. If they were, my major lesion size would be closer to 3 cm. That might warrant rads, since 2 lymph nodes were involved as well.
My margins were clear technically but I am not sure if it is known how wide they were. My mastectomy path report does not seem to be as specific or detailed as the one formy lumpectomy, unless I am not understand the language or codes.
My PS assures me that rads will destroy my implant surgery but I keep finding evidence to the contrary. My fella thinks the PS is great but I have thought about shopping around for a while. This could be the deal breaker with him for me.
There is a lot to think about. I had surgries in Oct. & Dec. of '08 with lengthy recoveries, then chemo from Jan. 9 until this afternoon. Rads would have to be done over the lunch hour or I would likely lose my job. After all I have been through, I just don't think I can handle skipping lunch and going back to busy and demanding job everyday, while continuing to recovery from chemo, especially, if the rads will make me tired too. I'll need time to visit various doctors too. This really puts me in a logistical bind. I am taking Scarlett O'Hara's lead and will think about it all tomorrow. Tonight I just want to feel good about finishing chemo.
Nancy
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Year of the Hat---- (Hi Nancy) Hugs to you , girl. MY PS said the rads might destroy my TE, but then again, it might not. I know there will be scar tissue there, and the PS hopes he will be able to scrape it out. There is another good thread---rads and tissue expander on the rads board. Also, look up at the post by Tender is our Might. She posts a nice study on women who had rads with the TE in and only three of them had to change it......
I think I may have a bit of a hard time keeping the TE in without a lot of problems, because I am small to begin with and my TE is already tight. I will hope for the best. In the end, I decided to go with rads because I don't want the BEAST back!!!!!!!!!
Hugs Nancy.
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bump
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Hi --
I had 2 foci, 1 IDC of 0.5 cm, the other 1 cm DCIS, diagnosed spring 2007. The initial sign was calcifications on a routine film mammo. Lumpectomy and rads in summer of 2007, altho the 2nd opinion onc suggested mastectomy might be wiser. Aug 2008 i had my 1st follow-up mammo, and it was digital -- more sensitive. 7 cm calcifications in the same breast; ADH on needle biopsy -- everyone agreed it was nothing new, just more sensitive technology. Local onc still did not think i needed a mastectomy, and local rad onc thought i didn't even need more biopsy (!) but the 2nd opinion (different from 1st round) disagreed. So did i. There would not have been much breast left, so i went with a single mastectomy -- which showed only ADH, nothing worse. So i could have left it ...??? Not. I would have twitched to death!
On the other hand, i have no regrets about waiting the year -- lots of psychology in this, and it was very important to listen to how i felt at each stage.
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Mouser- I have gone back and forth with prophylactic mast on the disease free side because of the type of cancers I had in my right breast. You are so right, lots of psychology in it all. At this point I am holding off from having the other breast taken off.
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I had multicentric IDC in my right breast.
Most of my treatment has been surgical. I had a lumpectomy, excisional biopsy and snb in 6/08. The final pathology report indicated an area involved with DCIS and a 0.8mm IDC tumor. There were in different quadrents , but the cosmetic results were okay as I was busty. I had an MRI before beginning radiation, which lead to a round of biopsies. Three in one day! Anyway, one of the biopsies indicated more IDC, a 1.2 cm tumor. At this point, I was told that mastectomy was my only surgical option.
I got oncotype testing for both tumors, which lead me to believe that chemo would be of little benefit. The smaller tumor had a score of 16, while the larger tumor had a score of 8. If I combined the chances of recurrence for both tumors it came out to be slightly under 16%, assuming 5 years of tamoxifen. Chemo would have reduced the chances of recurrence by about 3% as I was probably post menopausal at the time. That didn't seem worth it to me and my oncologist agreed, despite his original recomendation for chemo.
I am taking tamoxifen.
There were two reasons I decided to have a bilateral mastectomy. The first is that I was quite busty and I would have been very unbalanced if I had a single mastectomy. The second is there was a suspected lesion in my left breast that the biospy results were inconclusive. I decided that that a mastectomy was the ultimate biopsy. As it turns out there was no cancer in my left breast but there was ADH and other atypical cells.
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jrg- good to take your time. You have to do what's right for you.
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Thanks Flash. It's good to get everyone's view on this.
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I was originally diagnosed with Pleiomorphic Lobular Invasive Carcinoma based on biopsy of 2 lesions seen on mammogram and biopsy. MRI showed 3 more lesions, so total of 5 lesions in one quadrant. My surgeon recommended mastectomy which is what I had done. I figured my remaining breast would be so deformed I'd be better off just taking it off. Mastectomy path showed a total of 10 tumors scattered throughout--mostly DCIS. All the invasive disease turned out to be ductal. Thankfully, my 3 sentinel nodes were negative. My oncotype score was only 13 so I opted to not have chemo. I'm on tamoxifen now and don't feel any differently which is a relief. I'm struggling with whethor or not to have a prophylactic mastectomy of the other but probably will hold on to it, at least for now.
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