Mucinous Carcinoma of the breast
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Hi All. I am 44 year old wife and mother of 3 who is new to this group. I was diagnosed in July 2014 following a large biopsy (the radiologist thought I might have DCIS so took many samples to try to find something) with Invasive Ductal Carcinoma with mucinous and micropapillary features and intermediate DCIS in my left breast. My tumor on MRI and US measured 8+cm, and it was difficult to find. I had US testing 3 months before my diagnosis because I felt a lump, but the US didn't show anything plus I have had clear mammograms on the left for the past 4 years. I do/did have dense breast tissue so my images are harder to read. My biopsy testing showed that I was triple positive so I started with chemo and biological agents to try to shrink the tumor (it was mm from my chest wall but there was a preserved fat pad so no invasion). I did have one lymph node light up on the MRI but it looked good on US so the radiologist didn't feel there was any lymph node involvement. I had bilateral mastectomy with temporary expanders on 12/17. My tumor shrunk some but still was large at 6.5 cm. From how it felt to me, I felt it had shrunk more so now I wonder how long I have had this. I did get clear margins, and my sentinel node biopsies were clear. However, my new pathology report states Grade 1 Mucinous Adenocarcinoma with no DCIS. I have read that chemo is not always effective on mucinous types of cancer, but also read on this board that AC is a more effective chemo (not the chemo I had). Have others found any of this to be true? Has anyone had their path report change? I am not sure if I went from a mixed IDC to a Mucinous Adenocarcinoma due to the chemo or if the biopsy report is not as accurate as the final path report. I have many new questions for the oncologist following my path report. I think I will be having radiation and an endocrine therapy drug but all of my doctors were to meet on 1/2 to further discuss my case. I continue to take Herceptin every 3 weeks due to the HER + component. Anyone else have a similar experience with treatment? Thank you for taking the time to read my post.0 -
chrissie.....
http://www.ncbi.nlm.nih.gov/pubmed/22277312Above is a study regarding neoadjuvant chemotherapy directed at patients with mucinous BC. Despite chemo's small effect, it appears that those patients still do well.
Regarding your specific type, despite being HER 2 POSITIVE, which is extremely rare(our sister feelingthemagic is HER 2 Positive), the fact that your tumor was very large without lymph node invasion AND grade 1, tells us all that you STILL have a good prognosis.
Regarding dense breasts and mucinous BC....mine was also missed! Can't say for sure how long mine was developing before it was found...mammography also missed mine..US found it because my doctor and I felt it. MRI found a drop of DCIS...
That said, it looks like a tumor board is reviewing your case. You might also want to have a separate pathologist review it as well. Pathologists sit on tumor boards...however, with such a rare presentation, I think a pathology department at another hospital should be looking at it. Sloan Kettering in NYC has a rare breast cancer pathology lab. Perhaps you should contact the lab. They can't discuss treatment, but they can look very closely to see if there is anything else that MIGHT affect treatment.
I wish you well.
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Thank you Voraciousreader.0 -
I was recently diagnosed with pure mucinous carcinoma. I had mammo and US the end of oct. The radiologist told me immediately the lesion was malignant. Biopsy three days later confirmed that. I had a partial mastectomy Dec 18 and am recovering well. I had been prepared for a sentinel node biopsy but the dye and radioactive tracer did not travel into my lymph nodes. Just wondering if this happened to anyone. I understand this only occurs in 1/2 % of situations. My surgeon had to do an axillary biopsy and removed ten nodes. Have been told pain, recovery and possibility of lymphedema is much greater. Has anyone experienced this? According to pathology report lymph nodes and margins are negative. Tumor size-1.3 cm, DCIS-0.2 cm. ER+ PR+ HER2 neg. Met with oncologist who has recommended radiation and 5 years on Arimidex. We discussed oncotype test and she advised against it. Does anyone have an opinion on this? This is my first post, but I want all to know I have been following for a couple of years and have found information to be very informative and helpful. Thx to all.
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gammy...sorry to hear about your diagnosis and issues with respect to lymph nodes. I hope you recover quickly without complications.
With respect to the Oncotype DX test, if you note the NCCN breast cancer guidelines ( you can register at their website and download the professional version, red logo) it appears that the test is not recommended for those of us with mucinous or tubular histologies. However, despite the test not being as strongly validated for our type or recommended, many patients like us are getting the test done and our insurance companies are covering the expense of the test.
It appears at first blush that you have excellent prognostics and have many good choices to make with respect to treatment. I would request the test as a means of confirming your prognostics. I wish you well.
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Gammy4, They willnot order the test because your lymph nodes were negative and don't need chemo. I had originally requested it and after my surgery they told me its not necessary because I won't need chemo as the test is to show how your body will react to treatment. I will be put on Taoxifen for 5 years
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You might consider an appointment with a genetic counselor at a cancer research center. I did have the Oncotype test (I have the mixed or "hypercellular variant" of mucinous CA). My mother and my cousins from each family on her side of the family have BC so I wondered about other genetic tests. My oncologist didn't feel the insurance company would pay for testing since cousins are not considered first degree relatives and my mom was older when diagnosed. I went to the genetic counselor at the NCI designated research center in my state and the genetic counselor was very helpful. In addition, with her documentation, I was able to have the BRCA1, BRCA2, BART, and BreastNext Analysis done with the insurance picking up the tab. The results did not show any of the genetic factors that would lead to more treatment but helped me know I had left no stone unturned in looking at next steps. I was also in a research study done through Dr. Love's "Army of Women" studies that tested for another genetic variant called "kRAS". Since it was a study, I did not receive my results but as I understand it, they are especially looking at it as a risk for women who get BC when they are older. My testing was especially helpful to my sister recently when she went to a genetic counselor as part of a work up on some suspicious calcifications from her mammagram last year. With my results, they decided against doing the genetic testing for her. Another reason to consider going ahead with the Oncotype test is the more results the companies making the tests have from women with mucinous cancers, the more they will know for others down the road. As I recall, there is no charge for seeing the genetic counselors.
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Hi Chrissie29, Just chiming in as I'm the person with HER2+. My 'signature' will give you a glimpse of treatments I've had. Because my pathology results seemed 'non-existent' (I discovered in my research at NCCN site, directed there thankfully by Voracious Reader) I questioned my pathology and recommended treatments. My Onc immediately agreed to have pathology redone in another city, and also consulted with one of the 'top' bc doctors in Canada. My diagnosis did not change, but my treatment plan did change as a result. Don't hesitate to ask all the questions you have. Also, it helped me to get copies of all reports and then I made sure I understood them. (In my case I have one relative in the medical field and she would find the right person to ask the questions to help me understand.)
Chrissie and Gammy4 and Morningglory, wishing you well as you go through treatments.0 -
Hi Chrissie29, Just chiming in as I'm the person with HER2+. My 'signature' will give you a glimpse of treatments I've had. Because my pathology results seemed 'non-existent' (I discovered in my research at NCCN site, directed there thankfully by Voracious Reader) I questioned my pathology and recommended treatments. My Onc immediately agreed to have pathology redone in another city, and also consulted with one of the 'top' bc doctors in Canada. My diagnosis did not change, but my treatment plan did change as a result. Don't hesitate to ask all the questions you have. Also, it helped me to get copies of all reports and then I made sure I understood them. (In my case I have one relative in the medical field and she would find the right person to ask the questions to help me understand.)
Chrissie and Gammy4 and Morningglory, wishing you well as you go through treatments.A little update: A change in tamoxifen brands caused many side effects in August 2014. Because I was due to change to an A.I. at the end of the year, anyway, I began femara. I lasted 2 months with many difficult side effects. A month break and have just started Aromasin. One week, so far so good.
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Hi Chrissie29, I´m a second person with Her2+. I had a neoadjuvant chemo and the lump didn´t shrink. So my oncolist said, it was "for the cat" (without effect). Perhaps she is right. I hope the chemo has killed Icancer cells which were circulating.
dear VR: I´m worry about my one involved lymph node. I read the article you posted a few months ago. It wa a long term study concerning the survive rates of MC patients without and with positiv lymph node. Good prognosis for MC without involved nodes but very bad for patients with involved node. Although my last CT was good, I fear I can´t escape the statistic of this article.
Greetings to all
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Frieda! Oh my! I don't post the research so that you or anyone else should fret! My cousin was recently diagnosed with a very nasty small breast cancer and has been receiving grueling treatment. She could choose to make herself sick thinking about her "numbers"... But what good would it do? Instead, her doctor assured her that once she completes active treatment, she should do well!
Frieda! Be kind and gentle with yourself. I've always truly tried to believe as strongly and mightily as possible that as long as there is life, there is hope. In those quiet and dark moments please try hard to listen to your heart and hear those words....where this is life, there is hope.
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Thanks for the replies Frieda and FeelingtheMagic. My cancer center has been so wonderful with trying to give me piece of mind with my treatment decisions that when I asked her if they could send my surgical pathology report out to Mayo for a second opinion specifically for treatment effect (Mayo did the final read on my biopsy initially), they did. My RO and surgeon both called me and told me that although my tumor was still present, the majority of the cancer cells were not viable anymore, but because of the cancer cells floating in the mucin, a complete pathologic response is not as common so Frieda perhaps this was the case with yours so that chemo wasn't for not. Although my sentinel lymph nodes appeared ok, the local ROs and the Rochester Mayo RO have recommended that I do radiation so I will be starting this process tomorrow with my simulation. Thank you my HER2+ sisters for responding. I feel like I am a rarity with my mucinous diagnosis with HER2+(3) and my staging T3N0MX (x since I have never had any scans which makes me a bit nervous).0 -
Gammy 4-from what I have read on the patient version of the NCCN guidelines that I wouldn't needed to have chemo if I wasn't HER2+ even with my large tumor size of 8.4 cm per MRI (6.5 on final surgery pathology report). I had a mastectomy on 12/17 so if you have radiation, we may be going through it at the same time. Good luck with you treatment.0 -
Hi I cannot stop worrying,46 years old with little children still.
diagnosis- mucinous adenocarcinoma, grade 2, 5mm size attatched to 35mm dcis.
sentinal node biopsy 0/3 nodes.I have had wle and due radiation.
main concern is ki67 as 22%, oncotype being done now , only been offered tamoxifen, should I push for chemotherapy.
voracious reader any idea?
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Oh, those treatment decisions are so hard to make. VR will have words of wisdom. Two thoughts come to mind. Have you had a second opinion at a cancer research center, including a second look at your pathology slides? Was your case presented to a Tumor Board?
Sending good wishes your way.
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Hi wobbly, welcome to Breastcancer.org. We're sorry that you have to be here... but glad you found us!
In the main Breastcancer.org site there is whole section on Mucinous Carcinoma of the Breast where you'll learn more on treatments for this type of cancer, research, follow-up care, etc. Hope it helps!
The Mods
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wobbly...golden gave you pearls of wisdom!👍👍👍👍
I always say that knowledge is power...but I've come to accept that sometimes too much knowledge can sometimes be detrimental. In the 5 years since I was diagnosed, researchers have unfolded all kinds of info that has become helpful in getting a "feel" for how tumor cells behave. As new info is learned, some ideas of how the tumor behaves has been added or subtracted from the big picture. That said, having an medical oncologist whom you trust is extremely important. A good medical oncologist will digest all the info about your tumor and will get a "feel" for it. A good oncologist might suggest other opinions as well, such as from a tumor board.
Sometimes, when sisters are diagnosed, they want to throw everything at their tumors, which includes chemo. Other sisters might become frightened at the prospect of chemo. The bottom line for you is not to concern yourself with a single element of your tumor's characteristics. For most of us, there will be elements that we might find concerning. Please put that into perspective. While there might be concerning elements, there also might be favorable elements that outweigh the negatives. That's where a good medical oncologist's experience comes into play.
Hopefully, the OncotypeDX score will give you more info that will better guide your treatment plan. Believe me when I say that most of us have a negative element of our tumor's cells that cause us anxiety.
Please try to focus as you move forward on your journey that for most of us, breast cancer is a very treatable disease. Okay? I wish you and all our sisters well!
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Wobbly-I am 44 years old with 3 boys 11-17. I had chemo before surgery because my tumor tested HER2+ which is rare for mucinous adenocarcinoma, but my original biopsy also had some micropapillary cells so I am not sure if I was pure mucinous. My surgical path didn't have enough cells left to test for the micropapillary component so I was given diagnosis of mucinous adenocarcinoma. My tumor was large (8.4 cm with DCIS on MRI before chemo), and I believe when I looked on the NCCN guidelines (you can look this up on the internet as well), that if I had not had the HER2+ or concern of micropapillary cells, I wouldn't had chemo recommended even with my tumor size so large. My tumor was still measuring 6.5 cm after chemo although I had minimal viable cancer cells left. Pathologist said something about mucin pools limit the tumor from shrinking away completely.0 -
Hi would you believe I am a nurse and a little knowledge has inmy case not been helping, I can't sem to turn off.I am waitig for some cbt counselling.
they couldnt do the oncotype dx and siad there were too few cells.Ihe onc said this was a good prognostic sign and said pmbc doesnt ;iket o travel so I sit still fixating on the ki67 and grade 2 aspect.and churning over chemo just in case. . How come there were so few cells if the k167 was22- did the 3 core biopsy drastically reduce the invasive component?
I have asked for someone else to look at the slides but so far I know it was 5mm mucinous carcinoma in 35mm mucinous type dcis, er/r+/pr + her 2 neg.
wish they had turned off my brain during the surgery.
may it all settle soon x to all
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wobbly...so far, IMHO, you have GREAT prognostics. If you have read the NCCN guidelines, you will notice you have many more choices ahead than sisters whose tumors are more aggressive. Glad to hear that your tumor is being further examined. Hopefully it will help answer some of your questions and aleve some of your concerns.
By all means, if you think you need more support, let your team know. The time from diagnosis to choosing a treatment plan is extremely stressful. I wish you well!
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Hi Wobbly,
So sorry you are here. I also had a combo of DCIS and invasive mucinous breast cancer, I had two areas. One had a Ki-67 of 15%, the other 30%, the DCIS was grade 2, the invasive (7mm and 8mm) was Grade 1. I also had a micromet in one sentinel node, and we did the oncotype test. The recommendation was no chemo for a low score, chemo if it was intermediate or higher. One tumor had a 23, the other 26, so I did the chemo. Not surprised with the results, given the proliferation rate, but had I only one tumor and clean lymph nodes, not sure I would have done chemo. If I were you, once you get back the results, I would get a second opinion and/or ask to have your case reviewed by a tumor board.
Good luck! BTW I am done with active treatment, my hair is back and I feel great! My doctor assured me that I have an excellent prognosis. So I am going with that!
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This thread offers a wealth of info and I thank all you wonderful lady warriors for your helpful contributions. I'm honored to be one with you here. I've been visiting often, but never posted much.
Can mucinous carcinoma sometimes be multi-centric like higher grade DCIS and skip ducts?
Does mucinous carcinoma tend to have little covert tiny nodes hiding near the site of the original tumor and not easily discovered?
Do tiny mucinous lesions typically not show up on MRI scans? Would it typically show up on ultrasound?
I recently felt an embedded little tiny node, maybe about 1-2mm in size, about an inch above my incision (where I had a partial Mx a few months ago for a larger grade II papillary carcinoma tumor with IDC in a papillary background). There also was grade I invasive mucinous carcinoma surrounding the outside of and infiltrating into the papillary tumor, according to pathology. Largest area of invasion = 0.8cm.
This new node did not show up on a recent MRI, which was my first MRI scan. The surgeon thinks it's an undissolved suture that I had not noticed before. The surgeon pretty much said "see you in 6 months" and said that breast remodeling can go on for many months after a large incision across the breast. I had clear sentinel nodes, clear LVI and clear margins. ER+PR+HER2- I'm not at all comfortable going to bed each night with this new little node inside me, and I don't think this new tiny node is being taken seriously enough by my surgeon. Is this a common practice by doctors with grade I invasive mucinous carcinoma associated with intermediate invasive papillary carcinoma with low-grade IDC in the papillary background?
Are any of you aware of any cases where invasive mucinous cells latched onto an undissolved internal suture, called a suture granuloma?
Did many of you have both invasive mucinous and invasive papillary carcinoma together with DCIS and IDC-NOS (not otherwise specified) all at once? I'd enjoy hearing some promising and hopeful experiences because I didn't notice but 1 or 2 cases here with a mixed bag dx on this thread.
Thank you in advance for reading this, and I send you all Easter blessings for peaceful healing.
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Hi Ladies,
I will be joining you here. I was diagnosed yesterday with Invasive Mucinous Carcinoma, grade 1, 2 cm. I also had a bit of benign Atypical Lobular Hyperplasia removed in the surgery. I am so glad that WeAreConnected posted to bring this to the top of the active boards!
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we and gypsy....sorry to hear that you are joining us on this journey. We..you ask so many good questions that it is hard to know where to begin. First off, quite a few of us were diagnosed with mixed bags. I recall my medical oncologist telling me that you treat the most aggressive cells. So, if you had a combo of several types, you pretty much ignore the rest of the cells and base your protocol on the aggressive cells. Kind of keeping it simple despite a complex pathology. Now, with respect to the best way of diagnosing mucinous, it seems that ultrasounds can image mucinous cells the best. That said, mammography missed both my mucinous and DCIS cells and ONLY the MRI saw my DCIS. ...Now, regarding your concerns about having missed cells, I have to say that I have had exactly ONE MRI in the 5 years since being diagnosed. Early on, my breast had a seroma that pretty much obscured everything on most imaging. And, it's not uncommon following radiation to see things on imaging that may or may not be significant. So, my suggestion to you is to contact your radiologist and surgeon and speak to them about your concerns as you move forward. If you still feel you are not getting your questions fully answered, then perhaps you need to consider getting a new team. That said, my cousin was also recently diagnosed in the last year and her post treatment imaging required a second biopsy. The surgeon wasn't too concerned, but with the aggressiveness of her disease, she needed to have the additional biopsy which confirmed a benign finding. We, since your pathology seems to be not aggressive, it seems unlikely that you might have a recurrence so soon or cancer cells were left behind. I think you need to reflect on how you feel towards your team. Only you know the answer to whether or not you are comfortable with the info you have from your team.
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V-Reader, your insight is appreciated and thanks for sharing your own experiences. I noticed comments about mucinous carcinoma not always showing up on mammograms, MRI and ultrasound imaging; is this more frequent that not, based on your own personal experiences?
My sentinel nodes, originally clear per post-op pathology, but long before this new tiny node could be felt above my old incision. Is this the general consensus on this thread that "Only 3–15% of pure variety shows axillary node metastasis compared to 33–46% of the mixed type" ? https://ispub.com/IJS/28/4/14352
By the way I'm one of the 11% of mucinous cases who got misdiagnosed originally, as suggested on this thread. 2 pathologist-professors at a teaching hospital missed it in both pathologies. It was a 2nd opinion MD consultant who discovered the invasive mucinous component with multi-foci invasion on my slides, yet it was surrounding the entire 3cm tumor. I was originally told I had a grade II intraductal tumor with grade III DCIS. I'm clear on the DCIS also being present as a mixed bag, so thank your for your reassurance that this is a common presentation.
I'm now wondering about my last pathology report, if there is a difference between invasive pure mucinous and mixed mucinous cells mixed with IDC-NOS that took up residence in infiltrating inside an associated tumor (a papillary carcinoma)? To clarify, during the pathology review it was mentioned pure invasive mucinous cells were seen sitting outside the periphery of the intracystic papillary tumor. Also reported were invasive mucin cells sitting inside the papillary tumor that had infiltrated, mixed together with IDC-nos cells of various sizes, all sitting together in a papillary background within the capsule of the papillary tumor. He definitely reported there was mucin sitting both outside and inside the tumor. So does this imply I had both mixed mucinous (inside) plus pure mucinous (outside tumor)? I'm sorry for being such a complicated and confused case, as many of your cases seem to be also, so I don't feel isolated. My pathology reports did not mention the words pure or mixed or hypocellular variant or hypercellular variant that some of you ladies described.
By the way, thank you kindly V-Reader, I've decided to get 2nd opinions on this new tiny node (suture granuloma or whatever it is), that my surgeon has since dismissed. If it's another new mucinous node, it might not possibly show up on ultrasound imaging or mammograms perhaps, which is maybe why the surgeon doesn't wish to further test? Or it could even be a satellite papillary node that got missed originally, I wonder. I suppose my medical team is off the hook legally since they did finally agree to give me an MRI. I hope all you brave BC warriors continue to advocate for routine MRI screening for yourselves, regardless of your age and risks, but it's worrisome that even MRI cannot always spot everything that is palpable and very tiny. Has anybody on this thread had any luck finding mucinous lesions using those newer MBI scans?
Gypsy, welcome to the club of wonderful supportive warriors. I wish you the best in your treatment plan and send you big bunny hugs!!
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We....many of us found our pathology reports confusing! At my last meeting with the rare breast cancer researchers at Sloan Kettering, I asked about all of the pathology report differences. What I was told was that depending on where and by whom pathologists are trained will account for the differences in the descriptions! Pretty simple answer to a confusing issue! That is one of the reasons why I look forward to more genomic descriptions that the future of medicine holds! I think I wouldn't put too much emphasis on the actual tumor. What is more important going forward is what kind of treatment is necessary based on the tumor's most aggressive cells AND what kind of future surveillance is necessary since it is not uncommon to miss invasive mucinous cells. Hopefully in the coming weeks you will have everything clarified and you will come back here and explain to us your plans. I wish there was some better way for mucinous cancer to be discovered. Unfortunately, time and again, our tumors are missed. Luckily for many of us,when it is finally discovered, it is still in its earliest stages. That said, there have been a few sisters less fortunate. Please keep us posted!
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we....with respect to pure and mixed...pure is pure. By virtue of mixing with other invasive types, "mixed" gets its definition. Again, it isn't necessary to get too hung up on what kind of tumor you have. The "personality" of the tumor CELLS is what is important and you need to know that info so you can make your treatment decision.
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Finally....while statistics tell us that "mixed" mucinous is more likely to show up in the nodes, I often wonder if that figure is very valid. Remember, if there are just a few mucinous cells floating around a tumor that is mostly comprised of IDC-nos...it is listed as "mixed." There is no way, presently, to say with certainty how mixed a tumor is....so how much faith should we have in statistics of a tumor type that lacks precision?
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Thank you, V-Reader, for your wisdom. Hoping none of ours ever grow into something monster-sized like in this case study.
http://jjco.oxfordjournals.org/content/32/2/64.ful... (pdf)
http://jjco.oxfordjournals.org/content/32/2/64.ful...
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we..When I first was diagnosed, I researched like you, all of the literature regarding mucinous breast cancer. I put most of the studies on this thread. I've wondered about that sister described in that case report. To my knowledge, there hasn't been a follow up. Furthermore, there are other cases reported of sisters with 17 cm, yes cm! pure mucinous tumors with NO node involvement! I've wondered about them too! What seems frustrating to me, and probably you as well, is the lack of follow up with respect to these outliers.....
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