Jul 8, 2018 05:28PM voraciousreader wrote:
Chinese study using alternative treatment in metastatic mucinous bc
Posted on: Apr 23, 2009 12:43PM
On April 21st I had a core biopsy and today I was told that I have mucinous carcinoma of the breast. When I investigated on this website, the information given was that this is a rare type of cancer, about 2-3% of all breast cancers and usually occurs in post-menopausal women over the age of 60. I am neither. I am 51 years old, but still menstruate. I have an appointment with a surgeon, but feel as though I am in the state of shock. This "nodule" was found on routine mammogram and I convinced myself that it was nothing.
This may sound odd at my age, but I just recently started to enjoy and like 'these babies'. The thought of losing my breast scares me tremendously, and I have not even considered the thought of this cancer metastasizing. I won't think of that!Log in to post a reply
Posts 2161 - 2190 (2,237 total)
Jul 8, 2018 05:28PM voraciousreader wrote:
Chinese study using alternative treatment in metastatic mucinous bc
Jul 15, 2018 07:58AM - edited Jul 15, 2018 07:59AM by noraneko
Hi everyone, Thank you again so much for all the valuable information shared here!
I just wanted to update my most recent discovery, because this might be relevant to some here too. As I wrote in my previous post, I have MC (ER, PR positive, HER2 negative, LN negative, size 2.7cm, grade intermediate) and got lumpectomy in May. In pathology report based on my core biopsy, Ki67 was <5%. However, my mammaprint test was at the lower end of the "high risk" category and Oncotype Dx result came back with 14. Since all those numbers did not match up for me, I requested a meeting with my pathologist, whom I had never met in person. It happens one of the pathologists at my institution runs a program called "Ask Pathologist"and agreed to meet with me. He went over all the slides from my lumpectomy and explained how pathologists "read" the images. It was extremely helpful and empowering to actually see my cancer cells (with much mucins...) under microscope and understand what's going on. During the session, the pathologist actually pointed out that the slide near the site where core biopsy sample was taken was not necessarily representative of other slides (It was visually a less active site.) So I asked him if it's recommended to request Ki67 data using a sample from lumpectomy. He didn't think it would be too crucial for my treatment, but he did agree to request another report. The result just came back and says my Ki67 was actually 25%, which is actually considered to be high --my understanding is that this is again at a lower end of the "high" category. My oncologists say that they still don't think chemo is necessary for my case. One of them said that Oncotype Dx test does include data based on five or six genes (sorry I cant' remember the exact number) that relate to proliferation of tumor cells. Ki67 is only one of them. So according to him, we could still base our understanding of the tumor on Oncotype DX test and Taylor X study.
From a patient's perspective, however, it was really helpful to get the new Ki67 number, partly because from the very beginning the old number was referred to a lot as a proof that my tumor is really slow. It is actually helpful to know that my tumor is not that slow after all. Also all the numbers finally seem to match up for me. (I wish Oncotpe Dx test result makes more details available, including their result for Ki67 and data on other genes linked to proliferation.) Since I'm also pre-menopausal, I'm still exploring a possibility to get both tamoxifen and ovarian supression -- I'm meeting with my oncologist this week on that. She's actually recommending to stick to tamoxifen in my case and I'll find out why she thinks so.
If any of you have any similar experience or any feedback, I'd be so grateful!!
Thank you so much.
Jul 17, 2018 05:44PM annhkg wrote:
Noraneko, thanks for your sharing. I've read some article that mention expression of ki67 in tumor is heterogeneous, biopsy may not reflect 100% how is the ki67. That's also what we find in your case.
I am curious why you consider ovarian suppression? Is it suggested by your oncologist?
Jul 18, 2018 01:24AM monmadrid wrote:
Hi, Noraneko, annhkg, that's similar to my case.
Ki67 measures the proliferation of the cancerigenous cells on tumour margins, and as well as tumour grade, it IS heterogeneous along the tumour. That is why is so important to have another test done over the whole tumour after surgery, the bigger the tumour is, the most important. Mi fine needle biopsy, which took a tiny portion of tumour, showed up a 10% proliferation rate or Ki67 and grade I. I was going to get my oncotype done, to decide wether or not have chemo.
Then the whole tumour biopsy was done, and it came up with a 30% Ki 67 and grade 3, because the cancer cells were growing faster and were poorly diferenciated in some other places of the tumour (mine was big, 3.8 cm, and multifocal, I had 4 nodules). This agressivity is what sets the agressivity of treatment, as well. So I am now in the middle of my chemo treatment, and my oncologyst decided to skip the oncotype.
About hormone therapy and ovarian supression. I am 42. I dont want to do the ovarian supression. I suffer from chronic back pain and Im quite sure the supression would make it worst. From my last hormone testing I can see they are naturally slowing down their function. So I have to discuss it carefully with my doctor. I think tamoxifen would be enough.
Jul 19, 2018 08:21PM annhkg wrote:
Sorry to hear that you have to go through Chemo, it must be tough moment. Wish you don't have too much SE.
My BS also suggest only Tamoxifen to me, and I am now on Tamoxifen around 9 months, with 6 months regular checking on endometrial and uterus. And I have just asked my GN about ovarian suppression, he don't really suggest as many problem will come out if we stop the ovarian function too early, I think what you mentioned about back pain will be one of the problem after ovarian suppression.
Jul 21, 2018 06:26PM - edited Jul 21, 2018 06:36PM by noraneko
Hi annhkg and Monica,
Thank you so much for sharing your cases. It's so helpful to read all the information about Ki67.
As for ovarian suppression, my oncologist is *not* recommending it to me. She thinks it's best for me to stick to Tamoxifen, but she's still leaving the ultimate decision up to me.
She gave me those two articles to read:
"Adjuvant Ovarian Suppression in Premenopausal Breast Cancer" in NEJM Dec 11, 2014
"Tailoring Adjuvant Endocrine Therapy for Premenopausal Breast Cancer" in NEJM June 4 2018
The second one is a recent follow-up of the first study. (I tried to paste links, but it seems like I'm not allowed to post links on this forum? If you google the titles, you get direct links to the articles, though.)
I brought up the possibility of doing ovarian suppression to my oncologist, because I worried about the fact that I'm pre-menopausal at the age of 52. The Tailor X Study ("Adjuvant Chemotherapy Guided by a 21-Gene Expression Assay in Breast Cancer" that also just came out in NEJM) says that:
"A total of 40% of women who were 50 years of age or younger had a recurrence score of 15 or lower, which was associated with a low rate of recurrence with endocrine therapy alone. Ex- ploratory analyses indicated that chemotherapy was associated with some benefit for women 50 years of age or younger who had a recurrence score of 16 to 25 (a range of scores that was found in 46% of women in this age group). A greater treatment effect from adjuvant chemo- therapy has been noted in younger women,7 which may be at least partly explained by an antiestrogenic effect associated with premature menopause induced by chemotherapy.27 We did not collect data on chemotherapy-induced meno- pause. It remains unclear whether similar bene- fits could be achieved with ovarian suppression."
So I wanted to make sure that I really do not need chemotherapy or ovarian suppression, despite the fact that I'm heavily menstruating... (My pathology report from the surgery also indicates a small possibility of LVI etc. So I also wanted to make sure that I'm not under-treated.) My oncologist told me that she put my case on cancer board and five oncologists agree that I don't need chemo.
I'm finishing my radiation therapy this week. So I'm starting tamoxifen and see how I react to it. I still need to finish reading the two articles on ovarian suppression that I quoted above, but at this point I'd be most likely to do what my oncologist told me to.
Aug 10, 2018 03:53PM voraciousreader wrote:
Micropapillary pattern in pure mucinous carcinoma of the breast--does it matter or not?
Aug 18, 2018 02:26AM Mrsfingers wrote:
Hi all, I have just been diagnosed with mucinous carcinoma of the breast, there are at least 2-3 areas, I think 2 about 20mm or a bit smaller, one smaller still (not biopsied) and one lymph node. After the initial feeling of relief at being told the prognosis is usually good for this type, I am slightly worried that the initial pathology report didn't seem to contain much info. It seems to indicate pure mucinous and I know it's multi-focal, ER+ but no idea about PR and think we are still waiting on the HER test. There was no info on the rate of growth of the cells either?! As such no grade has been given. I understand that typically mucinous carcinoma is less likely to travel to the lymph nodes but yet I definitely have at least one lymph node involved. Naturally this makes me panic that mine is a more aggressive and fast growing type. Step one is mastectomy (as I understand it due to the cancer being multi-focal, i.e. in several different areas) and once they have analysed what has been removed we will have a better idea about next steps. I am 44, so again, not as old as the stats suggest. Anyway I look forward to sharing my experiences on this board and hopefully add to the picture of this type of BC.
Aug 18, 2018 02:42AM voraciousreader wrote:
mrsfingers....welcome aboard our journey. Many of us here were young, or youngish when we were diagnosed. Please be sure to ask that you have genetic testing including the OncotypeDX test. Once you have the final surgical pathology report, if there are any answers left out or borderline results, ask for a second opinion.
Keep us posted. We are here for you!
And lastly, register at the NCCN website and read the professional version of the breast cancer guidelines. Specifically note the page on Tubular and Mucinous breast cancer. Knowledge is power
Aug 18, 2018 03:52AM voraciousreader wrote:
yes. This thread is amazing. It is amazing thanks to all the people who have found this thread and contributed to it. When I was diagnosed more than eight years ago, there was little info on mucinous breast cancer. Whatever there was, I tried to consolidate it here, so future journey members would be able to come here and find whatever info there was. It was here, through the footprints of previous members, that helped make my journey easier..so I am trying, with the help of others, to make your journey a little bit easier....paying it forward...
Aug 21, 2018 12:49PM obsolete wrote:
Welcome MrsFingers, and I'm glad you've found us, although not for the obvious reason you're here. None of us ever wished to be here, but we're a great group, and you are not alone with multi-focal areas of Mucinous and mastectomy.
VR, again I thank YOU for being here with and for all of us and your ongoing sharing. Beautiful expressions of your wisdom, and thank you kindly everyone. Wishing you all the best.
Aug 23, 2018 10:07AM LinnyG wrote:
New here - just received the radiologist's call a couple of hours ago that I have mucinous carcinoma - 3 areas. Next stop is breast surgeon. Hopefully I'll be able to get an appt very soon! Was relieved to hear that it is treatable and has a good prognosis. I am in line with the age of diagnosis - I am 70.
Thank you for being here. You all have a wealth of information and I am just now digesting it.
Aug 23, 2018 12:42PM obsolete wrote:
LinnyG, A warm welcome to our group. Many of us had multi-focal MC and we're alive & well several years later. If you haven't already had a pre-operative MRI, please ask for one. Hugs & best wishes. Following reposted ...New study questions true favorability of rare breast cancer type
Aug 28, 2018 04:13AM LinnyG wrote:
Thank you. This is a group I kinda didn't really want to join! Just to re-cap...Biopsy on 8/20, got THE call on 8/23. Saw a wonderful breast surgeon at a large teaching hospital in Phila. the next day (thanks to my daughter-in-law who's a physician with an oncologist father!). Surgeon spent almost 2 hours explaining things to me and my options. I am Stage 1, PR+, ER+, HER2-. Oncotype DX to be done. I have 2 separate sites in L breast with micro-calcifications scattered between. Plastics appt is 8/30. Option 1 is, of course, mastectomy with TE. Option 2 is a lumpectomy. The issue with Option 2 is the amount of breast tissue that will need to be excised and whether or not the plastic surgeon can 'rebuild' that area. With lumpectomy, there would be radiation. Chemo to be determined. Nurse-Navigator has called me. I feel like we have a team and ready to get this done. Thank you for this site and all the information and support.
Aug 29, 2018 08:12PM tricianneAust wrote:
Lindy G I so agree this is not a group you would voluntarily choose to join, but all things said, its been a fantastic support that's loaded with useful information that is knowledgeable & accurate & has been a blessings to me. Special thanks to VR & those of you that help so much to keep us current. These days, as the rest of my life has taken over, I just read the linked posts that I get in my email, which at least keeps me up to date & praying for all you new joiners. I am fantastically well so that's what I pray for all of you at the end of your treatment.
Its nearly 8 years since my diagnosis, & lumpectomy. Blessings to you all.
Aug 30, 2018 11:50AM Bosombuddy101 wrote:
I just thought I'd pop by and say hello to all the newbies who have joined us. I'd like to reassure you that life does quickly get back to normal after the initial diagnosis/surgeries and treatments. It's been quite a year and tomorrow will be the one year anniversary of my bilateral mastectomy. The tissue was all clear except for ALH on the left breast and ADH on the right. I'm so grateful for this group---I don't think I would have been able to cope otherwise.
Aug 30, 2018 01:11PM Bosombuddy101 wrote:
I wonder sometimes if I had settled for the lumpectomy (which I did have) followed by radiation therapy ( I opted out because of the mastectomy), whether the ADH or the ALH would have mutated to an aggressive cancer. The ADH and the ALH was not visible on the 3D mammograms.
Sep 4, 2018 12:16PM obsolete wrote:
Hi BB101, I had once read that ADH/ALH increases a patient's odds of breast cancer by 500% as compared to the average woman/man without ADH/ALF, although I do not recall the source. The "what if's" are definitely frightening. I also had both a lumpectomy followed by a bilateral mastectomy. The multiple Mixed MC lesions had only been discovered from my BMX, as prior lumpectomy and prior imaging had not shown any of the several Mucinous cancers, only the other subtypes I had earlier (Invasive Solid Papillary & DCIS).
I will always be eternally grateful to VR & BC.org and to all of you for having posted & commented on the M.D.Anderson 2009 study linked earlier. One never knows if we'll be part of that 38% with multiple "invisible" MC lesions. And a warm welcome to the new MC patients who will help to guide all of us. Best wishes to all.
Sep 5, 2018 01:30AM LinnyG wrote:
Got my surgery date - 9/25. L mastectomy with a tissue expander. I'm apprehensive about the expander, but this site is so very helpful. I find myself referring to it daily. I just want to get things rolling. Hoping to have most of this 'challenge' done by the New Year. Taking a deeeep breath!
Sep 5, 2018 01:56AM Bosombuddy101 wrote:
So frightening! The mucinous cancer wasn't even detectable by imaging? Oh, man you dodged a very big bullet! It's the "what if's" that shakes me to my core. I was literally being pushed to have a lumpectomy followed by radiation therapy. I begged the breast surgeon for a bilateral mastectomy and she said, "NO!" Of course I wanted the cancer out ASAP so I agreed to the lumpectomy but in the meantime I was making plans to see another breast surgeon. Can you imagine if both had said, "No, we're only going to do a lumpectomy followed by radiation therapy." Could the radiation have caused the atypical cells to mutate to cancer? This could have been a never ending nightmare until my death.
Sending good vibes your way for your surgery on Sept. 25. Please let us know how things go. You'll breathe a huge sigh of relief once the cancer beast is out.
Sep 13, 2018 01:01PM LinnyG wrote:
Met with plastic surgeon again and got my final instructions. I've been (over)reading. I actually watched a video of the surgery. As a nurse, I just needed to see the mechanics of it all! My mantra regarding the expander is 'it's just temporary'.
Oct 31, 2018 02:31PM voraciousreader wrote:
Distribution and Clinical Utility of the 21-gene Recurrence Score in Pure Mucinous Breast Cancer Patients: a case-control study.
Oct 31, 2018 02:32PM voraciousreader wrote:
Breast cancer histopathology is predictive of low-risk Oncotype Dx recurrence score.
Oct 31, 2018 02:36PM voraciousreader wrote:
Micropapillary pattern in pure mucinous carcinoma of the breast - does it matter or not?
Dec 5, 2018 09:38AM Sunshine_On_Water wrote:
Hello and a big thank you to those who continue to contribute to this thread (esp. Voracious). It has been immensely informative!
At this point, I can't add much to the knowledge base beyond Hey, I got it too. Lol. Would deeply appreciate any insights or direction others can offer though.
Will attempt to be brief: Had bleeding from my right nipple. 3D mammogram -- nothing. Ultrasound -- nothing. 3D mammogram with dye -- nothing. Ultrasound with dye -- hmm, maybe something. MRI with dye -- ducts in 12 o'clockish position lit up. Biopsy dx was DCIS ER+/PR+. Lumpectomy on Nov. 7.
Local hospital pathology wasn't certain what they were seeing so sent the slides off to Mayo. Though BS told me it was mucinous, it has taken me until today to get the report and -- from what I've read here -- it is fairly short on needed information. Here are the highlights:
"Invasive mucinous carcinoma, Nottingham grade I (of III), arising in a background of ductal carcinoma in situ (DCIS), cribriform and micropapillary type."
"Immunohistochemical staining for p63 and calponin performed on block C demonstrates absence of myoepithelial cells in the invasive focus."
It also mentions that the tumor appears 3.5 mm in greatest linear extent but appears transected and additional sections from same area should be examined to determine an accurate size. There is more about the DCIS (not a good margin on the anterior) but that is about it.
So does something in there tell if it's pure or mixed? Is the mucinous ER+ / PR+ like the DCIS biopsy? Should it say that somewhere? And is 3.5mm too small for even the MRI to pick up? I have super dense breasts. Concerned about those scary 'invisible' areas lurking.
Geez, this got a bit long. Thank you to all that manage to read it!
Dec 5, 2018 10:23AM Moderators wrote:
Welcome to the community We are sorry for your diagnosis but glad that you reached out to our members. We are sure they will be along soon to welcome you and support and respond to your questions. You may want to look at this page on Reading your Pathology Report. It might be helpful. Let us know how we can help you navigate your way around here. Stay active and keep us all posted. The Mods
Dec 5, 2018 02:30PM voraciousreader wrote:
sunshine....you have great questions about your pathology report. The best person to answer those questions would be either your surgeon or MO. That said, it appears that your tumor is small. So, you have lots of options about treatment. Check out the NCCNs website. Register and then read the breast cancer treatment guidelines. Specifically, look for the page that concerns Tubular and Mucinous breast cancer.
That said, you are an example of many of us mucinous sisters, who experienced problems with imaging. Mine was missed on mammography. A sonogram located mine and an MRI found a “drop” of DCIS. it really alarms me that mucinous cancer is so hard to detect. And, to make matters worse, thereis no firm way of writing a pathology report....
The good news is you are now on your way to the treatment part of your journey....please keep us posted. We are here for you.
Dec 6, 2018 01:17PM Sunshine_On_Water wrote:
Thank you Moderator and Voracious. I think there is a lack of knowledge on mucinous breast cancer at my local hospital. It is fairly rare. What I've gotten is along the lines of 'It's mucinous.That's good'.
But I've learned from this thread that there can be more to it than that. I've delayed my re-excision in order to have a consultation and review of everything at a NCI cancer center. This is the time to get the most complete information I can to base my decisions on. Hopefully it will all line up with "It's mucinous.That's good", I get the re-excision and my mind can rest a bit easier.
Again, my appreciation to all who have kept this thread filled with personal experiences and research. It has been invaluable to me. :-)
Hugs and my best to all.
Dec 16, 2018 10:31AM LinnyG wrote:
It's been a while. Had L mastectomy with TE and with 3 nodes removed. 9/25. Nodes negative - whew! Minimal discomfort, thanks to an ON-Q pain catheter which stayed in for 3 days. Managed with Extra-Strength Tylenol. Waited a while for the Oncotype score. Took almost 3 weeks. Score was 2. Whew again! PS put 350cc in TE at surgery and had 4 fills of 60cc ea, last one 11/8. No pain. No issues. Fast forward to 12/12 - had exchange and right breast reduction/lift. Once again, thanks to the ON-Q, no pain. ON-Q was removed the next day (and no pain at all), which was also my 'unveiling'. Omigoodness! They look great! Swollen, bruised, fresh incisions, but looks so good. The man is an artist!
I feel like I bounced back from the mastectomy very quickly. Day 6 husband and I drove to Atlantic City, walked the boardwalk and went to a casino (drains in tow!). Well, not bouncing back so quickly with this reconstruction. Taking a shower just does me in. I'm just wiped out. I know it's less than a week, but holy cow, I'm beat up! I know it's temporary....but it's also Christmastime! Did everything prior to 12/12, but wanted to bake some cookies and get out and enjoy the lights, etc. Not happening!
Not complaining at all! Just not used to feeling like a rag doll! Best wishes to all and thankful for this site.