Mucinous Carcinoma of the breast
Comments
-
Kurorin - Sorry you are joining us but welcome to the board. I've found so much helpful information and support here. There have been a number of postings in recent days, for example, some interesting insights on the use of Oncotype testing for those of us with mucinous carcinoma. One thing when I first joined the BCO discussion groups was that I didn't always get to the "Last" page when I'd go to a topic. Making sure I always click on the final page helped me get the all of the most recent info (we are on page 22 today!).
0 -
Golden...your post bumped us to page 23!!!!
0 -
Golden01,
Last page? Dahh...
Thank you so much!
0 -
Don't worry Kurorin, we have all wondered at the beginning of using this wonderful link why nothing new is happening and then we find out we need to read the last page. Every few weeks now I refresh my pages by Bookmarking the latest page to my favourites and deleting my previous bookmark. That way it doesn't take me so long to find the latest comments. The Australian Breast cancer site actually takes you immediately to the latest comments so not sure why breastcancer.org hasn't done this for the topics, it seems to do it in the index page, you can check which topics have been updated but not being very computer minded I dont have any answers here.
Welcome KnbsAngel and Kurorin I do hope you get as much support from this site as I have, it has cleared up many aspects for me about MC. VR thanks as usual for all the latest info. I have added both of you to my handwritten daily prayer list so I keep us all covered in regular prayer. Its our last day of autumn in Sth Australia, so winter here we come. TricianneAust
0 -
TricianneAust,
Thank you~ It is early Spring here in Oregon but it was snowing up in the mountains just last week. I am so ready for Summer
0 -
I've been reading discussion board topics for a few months and finally registered a few weeks ago, but then couldn't figure out where I fit in. My breast tumors were finally diagnosed in Feb 2011 as IDC predominately mucinous with extensive DCIS, papillary-cribriform type, and with metastatic mucinous carcinoma in the lymph node biopsied. This was after years of normal mammograms. I'd had several unexplained pleural effusions, so I wasn't too surprised when the PET/CT scan lit up nodules in the lung and the lung biopsy came back metastatic mucinous adenocarcinoma, ER+, PR+, Her-2 neu -, similar to the breast primary. I’ve been taking arimidex since March 2011 and that reduced tumor size and activity, with CA 27-29 tumor markers going from 188 down to 43 in January 2012 and then creeping back up to 63 as of Monday. I’ve had no surgery, radiation, or other chemo, so I don’t have much in common with other stage 4 women who have been through so much. Practically everyone on the Mucinous thread seems to be stage 1 or 2 and can take heart in statistics that show little chance of metastasis. I really appreciate the reams of research Voracious Reader has posted, but I haven’t seen anything on how mucinous tumors behave once they have spread. My onc wants to stick to arimidex until the tumor marker passes 100, but with its recent increase we’re looking at substituting or adding another AI and possible infusions with Zometa every 6 months to reduce the chance of further mets, if we can get my insurance company to go along. The story seems to be that if you have to have BC, mucinous is better than most, but does anyone know if this is still true in comparison to other stage 4 BC?
0 -
Carp Diem... I am sorry to hear about your diagnosis. You are absolutely correct about there being a dearth of information regarding later stage mucinous breast cancer. I am always on the hunt for ANY research specific to mucinous breast cancer. Unfortunately, it is poorly researched because of its rarity. I would guess that later stage mucinous breast cancer is studied even less because that is even rarer. If you go way,way back on this thread, you will note that there was a sister who was dealing with later stage mucinous breast cancer for a very long time. I think her journey began way before mine. I never corresponded with her.
I find it very troubling that there is little research devoted to our type of breast cancer. I am disappointed that the most recent journal article published about neoadjuvant treatment mentions that "more innovated regemines" are needed... And NONE were mentioned!
Carp Diem, I wish you well and hope that you will continue to post so you can enlighten future sisters about what treatments were offered you. I realize that doesn't help you now, but perhaps you can help sisters in the future.
Thoughts and prayers to you.0 -
I have just received my OncotypeDX result of 20. Higher than I thought it would be. I was feeling secure in my decision to have a lumpectomy and radiation, along with Tamoxifen. Now, I am not so sure. Is a score of 20 high for this type of cancer? Wondering if any of you sisters have insight as to why the score would not be lower. Or, did any of you have a similar result.
Many thanks!
0 -
hey stayinhappy,
my profile (age, tumor type/size) is very similiar to yours and my oncotype was 9 (with lumpectomy, rads, tamoxifen), 14 (with lumpectomy + rads only). Totally relate to your feeling that the score felt too high - I was pretty upset when I got my score so I can understand how you feel. I wonder if that's a normal response, regardless of the number? I felt that after all I'd done -- everything that had been suggested -- why wasn't that score 0! Perhaps a more emotional than logical response, lol.
Do you know how much genetic history factors into the score? This could account for the some of the 20.
0 -
Katie... I am a little confused by what you just posted regarding your Oncotype DX score. Unless you had multiple tumors evaluated, you only receive one Oncotype DX score. The score that you receive ASSUMES you are taking Tamoxifen and signifies your chances of distant recurrence after ten years. So, for example, I received a score of 15, which means that if I take Tamoxifen, following surgery, my chances of getting mets in 10 years is 10%. If I don't take Tamoxifen, I increase my chances of getting mets by almost 50%. Sooo, could you please clarify for us what Oncotype score that you had? Thank you!
0 -
my score was 9. But i was shown several graphs for different scenarios, one of which showed what my score would be if i did not take the tamoxifen -- i spent quite a bit on time on that one because at the time, i was considering skipping the tamoxifen step. i'm at work now but can scan the output when i get home.
0 -
Stayinhappy.... Ahhhh.. Your score is in the dreaded intermediate score range. If you go back on this thread, I posted at some point the average score for pure mucinous breast cancer. That score, 15, has remained constant since the test was introduced. However, there is one BIG however. The Oncotype DX test has NOT been as strongly validated for our type of breast cancer AND, while the NCCN just started recommending the test for MOST Stage 1 and 2 ER+ breast cancers, they haven't made that recommendation for us although many of us are getting the test.
Regarding the intermediate score, we won't know until the TailorX trial is completed which women would truly benefit from chemo. Unfortunately the results from that trial are a few years away and can't help you now.
Please remember there are many treatments available that should help reduce your chances of recurrence. Despite your Oncotype DX being in the low intermediate zone, remember you still have great prognostics. Good luck in making your treatment decision. Keep us posted! Thoughts and prayers to you!0 -
Katie.... Thanks for the clarification! So basically, your score of 9 would give you a distant recurrence of about 5 or 6 percent if you take the Tamoxifen and if you don't take the tamoxifen your percentage of distant recurrence would go up approximately 50%.... bringing you up approximately another 3%.. which would then correspond with a score of 14. But that is not a correct analogy because a score of 14 assumes you are taking Tamoxifen. I think though, in your situation the bottom line for you is whether you do or don't take Tamoxifen, you STILL are at low risk of recurrence! I wish you well too!
0 -
Thanks for the replies. Amazing how a little knowledge, insight and reassurance can calm my anxiety. Best to you all!
0 -
My Oncotype score was 27 and I have the "Hypercellular variant" of mucinous carcinoma (not the pure kind). I decided not to do chemotherapy after getting a second opinion at the NCI designated research center in my state. VR is right that until the TailorX trial is done, it won't be clear for us in the intermediate range. Part of what helped me make up my mind was looking carefully at the wide range of response shown in intermediate range (some had worse outcomes).
0 -
Hi all,
A quick check-in. I posted a rather long post the other day.. and I suspect I didn't press 'submit' because I can't find it!
Had the masectomy, nodes clear, clear margin on mucinous, a little DCIS found.
And then my HER2 came back postive. Wow, that came out of left field. Anybody here have that combination? I can't seem to find anyone.
Chemo and Herceptin recommended. Voraciousreader.. thanks for your resource of NCCN guide, as what I found was enough for Docs to request pathology for mucinous to be re-looked at by pathologists in a bigger center, and FISH tests for Her2 - even though first test for Her2 came back a 3 and 100%. (ER/PR also +) Mucinous is rare enough, a Her2+ result very unusual.
I was supposed to start chemo next week, but things are on hold til tests are done. I did find research that reported a mucinous cancer can be misdiagnosed, as there is a 'mucinous-like' DCIS.
I'm very impressed the doctor listened. You might remember I'm the one with the daughter who had a rare ovarian cancer (and is soooo well now!!!!!!)
She had some critical situations during chemo, including two strokes. Don't let that frighten you everyone - this isn't likely for others. It was discovered she has a familial condition with strange blood vessels (also rare) and now I will be tested for that before chemo. As well, we are very similar in sensitivies. If it turns out I need chemo, I'll do it. Just must be sure it's right.
Have not had an oncotype DX. Busy focussing on making sure diagnosis is correct!
So there's my update. If anyone knows more about mucinous and her2+, please share. This was what my post was about the other day, but if it is here I can't find it. (Brain drain!)
And to all of you... imagine hugs from me. We all so deserve special love and attention, don't we?
0 -
Feelingthemagic....Thank you for posting regarding your situation. Glad to hear your surgery went well. I just want you to know that there ARE a handful of mucinous breast cancer sisters with HER2 over expression. Here is a case:
_________________________________________________________________________________________________________________________________________
J BUON. 2011 Jul-Sep;16(3):565-7.
Pure mucinous carcinoma of the breast: a single center experience.
Dogan E, Aksoy S, Dizdar O, Arslan C, Dede DS, Ozisik Y, Altundag K.
Source
Department of Medical Oncology, Hacettepe University Institute of Oncology, Ankara, Turkey.
Abstract
PURPOSE:
Mucinous breast carcinoma is rare subtype of breast cancer. Histopathologically, it is classified into two forms, pure and mixed type. It recurs late, metastasis to axillary lymph nodes is less common and is more hormone receptor positive. We herein present the data of our patients with pure mucinous breast cancer (PMBC) treated in our institution.
METHODS:
Among 1211 breast cancer patients with breast cancer diagnosed and treated in Hacettepe University Institute of Oncology, 20 patients (1.6%) with PMBC (defined as having mucinous component of more than 90%) were identified. Patient demographics, tumor characteristics and patient outcomes were assessed retrospectively.
RESULTS:
The median age at diagnosis was 52.5 years (range 27-80). The majority of the patients presented with stage II disease (n=15; 75%). One of 20 patients recurred with bone metastasis 50 months after diagnosis. Median follow-up was 39 months (range 3-137). Estrogen receptors (ER) were positive in 16 (80%) patients and HER-2 positive in one (5%). Twenty-five percent of the patients had positive axillary nodes.
CONCLUSION:
PMBC is a rare entity with favorable prognosis. Lymph node metastasis is rarely seen even in large -sized tumors.
__________________________________________________________________________________________________________________________
MAY I MAKE A SUGGESTION.....While you wait for a second pathology reading and FISH test results ...I would HIGHLY RECOMMEND that they do the Oncotype DX test on your tumor as well. Suppose the second pathology comes back negative for HER2 over expression? Then being highly ER+ you would qualify for the test...even though NCCN guidelines haven't recommended it for us. HOWEVER....there is another reason for doing the test and that is, the Oncotype DX test will also confirm the HER2 expression as well. So, in essence, you will have multiple ways of analyzing your HER2 expression. I know the Oncotype DX test is NOT recommended for HER2 positive tumors, but since your case is very unusual, I would want to exhaust all available means of confirming the pathology.
Good luck and keep us posted! I wish you well.
___________________________________________________________________________________________________________________
0 -
I appreciate all the information that is provided here so very much. The second look at pathology slides is so important.
0 -
Hello Voracious and all,
Again, thank you for all the info...copied, ready to share with doc!
Latest update: feeling pretty supported by the med system. Collaboration with experts in Canada has happened. Recommmendation is chemo, even before FISH test is back. A different concoction though.. shorter time frame, less toxic. Don't know all details, as they are supporting me on taking off paddleboarding out in the bush for a few days.. so I meet Doc for final details on tuesday 19th, then CT scan that day re the blood vessels, and chemo start very shortly after. (Maybe Wednesday but doc wants a face to face before we say 'go'.) If Wednesday, one more fill of the new cute little boobie and onward we go.
It's a strange journey isn't it, dear women? My big concern now is best way to support my 4 year old granddaughter through this! (the weekend away is with her) My little 20 month old will be okay. The 4 year old, besides seeing her auntie go through this.. and only remembering bits.. well, she also had lumps in neck removed last year. It took several months before cat scratch disease was diagnosed, and she's good now. But the wee darlin' now asks "do I have to have to have more lumps removed?" "when does mommy get her lumps removed?" Oy!
Off to play. Such big hugs to all of you. Thank you thank you.. for all the info you share here!
0 -
PS. I WOULD NOT have found the information I needed to make a credible case for the doctor if not for this site, info and links shared. I cannot begin to say HOW important that has been for me. Kick-Butt Grateful!
0 -
Feelingthemagic... Carpe Diem!
0 -
Hi all my MC sisters, I continue to be prayerful for all the life events you are dealing with. I leave all the medical info to Voracious Reader as her answers are so competent and knowledgeable. For Feelingthemagic it may be helpful to know that your 4 year old grand daughter is commenting on the normal reality of her life, lumps are being removed from different family members. She may well be managing this fact as just a regular part of her life without being distressed by this as she may not have the capacity to understand the implications. You will know if she needs support when you listen to her feelings and thinking about these events. Then if she is upset by what is going on around her you will know what support she needs to handle these events.
When I had Bowel cancer 11 years ago and needed a colostomy my friends little girl (about 5 yrs old), who had been told that I had a "bag" asked when she could get one too, she quite fancied the idea. However when I told her that I had had a very sick tummy and that is why I had to have a bag to collect my "poo" she promptly told me she didn't want to have a sick tummy so she changed her mind. Likewise my niece now in her late teens has told me she wasn't worried about me one bit having my op and now feels "awful that I wasn't very sympathetic". She was reassured by the reaction of the whole family that they were confident that I would handle the diagnosis & treatment. As I could share with her more recently I was pleased that she wasn't distressed by the bowel cancer diagnosis and was able to be reassured by the attitude of those around her that while they were concerned they weren't panicking too much so she could take it in her stride.
I am fascinated by children's understanding of their reality. many years ago my neighbour's little girl about 8 yrs old told me that her Mummy was having another baby. She then queried why I wasn't having a baby, my smart reply, being happily single, was "I don't have a daddy for the baby" where upon she replied "You can borrow my daddy if you like, he likes babies". I did my very best not to smile too much. Children are delightful!
Lots of blessings & prayers Tricianne
0 -
Hello, I have questions for you ladies.
I am seeing my med oncologist tomorrow. This is my second appointment with her, and I just learned from the nurse that the oncotype result just came in this morning and it was 16, and I won't need chemo. Genetic testing result should be faxed to their office sometime today, so Dr will go over both results with me tomorrow.
So my questions to you is; what should I ask doctor this time? (what would you ask?) It sounds dumb, but I don't know what to ask... The last appointment was not productive; it was just meeting her for the first time. I am 39, tumor size was 2.5cm, margin was not clear last time so I am going for mastectomy in 3 weeks (possibly radiation, too). I am assuming the genetic testing will help her figure out whether I need to have my ovaries suppressed?? There are so many things going on in my head, I don't even know what would be a good relevant question to ask... Any suggestions will be appreciated
0 -
Kurorin... I am happy to hear that you got an OncotypeDX low score. If you have time today, I highly recommend that you check out the professionals version of the 2012 NCCN breast cancer treatment guidelines. Somewhere around pages 17-19 discusses tubular and mucinous breast cancer. Then read pages 92-98 which discusses endocrine therapy which includes ovarian suppression.
Due to your good prognostics, you have many options available! Good luck!0 -
V,
Thank you for your suggestions. I appreciate that you specified which pages to read. English is not my first language, so reading 100+ pages of medical documents would put me into a coma!!
0 -
Kurorin... Thank you for giving me a good laugh today! I really needed it! Just make sure you look at the professionals version and not the patients. The mucinous and tubular follow the more traditional ER+ HER2 negative pages. Not exactly sure what page... But it's around 17-19.... If you have any questions... Let me know...
0 -
Hi everyone, I haven't posted on here for quite a while but I believe it may be important to keep others informed as I can see many new ladies joining us so if it helps someone else in a similar situation then I guess that is the whole purpose of this forum and I hope I can help. Just a quick update, I had a NSM on the left last year dx 11cm DCIS with 1.2 mucinous 100% ER+and 80% PR+ Her2 - I chose not to take Tamoxifen as I was told it would be of little benefit, possible mistake but one I'll never know for certain. I posted on another forum many months ago about a discharge from the left nipple (a yellow dot on white bra from time to time) and didn't recieve any comments but I have updated that too and so I will be copying the information from there on here so I hope all this makes sense. At the time that I had the discharge I saw my BS and he squeezed the nipple and a bloody discharge came out so it was sent to pathology. This showed abnormal cells so given that I had doubts with the answers I was getting from my BS I decided to get other opinions from another team and hospital and a reputable RO. After further tests (MRI, CT scan and pathology from discharge) there were just too many unknowns ( the pathology showed abnormal cells, and the MRI showed another lesion in the right breast) so on the 18th of April I chose to have a double mastectomy with TEs so had both nipples removed and more skin removed than I had with the NSM. Path from left showed a 0.9mm invasive cancer not associated with the discharge and atypical hyperplasia in the nipple causing the discharge and the right side had another papillary lesion (so the right choice as far as the BMX for me). Doctors weren't too concerned with this but Tamoxifen was a given. Because I had this second surgery with a different team and hospital they reviewed the original pathology from the NSM last year and there were a couple of new findings so the pathology was sent to another reputable Professor to review and this showed that apart from the 1.2cm muscinous cancer there was also 1cm of encysted papillary carcinoma adjacent to this making it a total of 2.2cm. There were also 3 other 1mm and a 2mm invasive areas found so it seems that amongst that 11cm of DCIS there was a lot more going on than first believed. My new RO sat with the pathologist and went over every detail of the tissue and new findings and they both do not think that radiation is definitely necessary and were leaning towards just Tamoxifen and observation but my BS and his team are all recommending rads. This has been such a long and exhausting process and I have decided to go ahead with rads and I will go in next Tues for simulation. Having rads 14 months after original surgery isn't something that is obviously very common but I'm hoping that I am still going to reduce any possibility of a recurrence by doing it now and then by going on Tamoxifen and hopefully it will mean the end of all this uncertainty. One can only hope and pray! Good luck everyone on their journeys and I hope you have a wonderful team helping you with any decisions, they are not always easy to make but I guess we can only do what we feel is right for us. So far I haven't regretted any of mine so I hope this next choice is also the right one. Take care...Sara x
0 -
Hi SaraAust. We certainly will be hoping and praying that your current decisions are the right ones for you.Your journey is a different one than the standard and may the team that you are working with now be a wonderful one for you, they do seem like they are being very thorough. May you make good progress though it all.PS Which bit of Australia are you in?
Blessings Tricianne
0 -
Sara, thanks for posting... this experience certainly has twists and turns, and I realize how valuable it is to show up here and learn, learn, learn. (on a 'good' side.. the brain loves to learn new things. Keeps us young. Now if I had a choice, this is not the thing I'd be learning so much about, but still, it's good for our brain. ~smile~)
My update: It does look like I have her2 positive. Chemo begins Monday. During a CT of brain (another story, but results good), 'something' was seen regarding my thyroid. And so, an ultrasound on the thyroid Friday. I felt pretty panicky, had the onc doc call me to tell me more. He said, "are you always this panicky?" I answered, "No. Just since I met you and you said 'chemo' when all else had indicated none." ha!
Other tests also being done... I think, Onc dx included. But the window of 'safe start' for chemo ends next week. My terminology might be off there. I just know they want to start chemo within 3 months of first surgery.
I do know the expert in Canada for Breast cancer has reviewed and she is making the chemo recommendation. (will include herceptin) I feel like chemo is a right choice.
I am on an eating plan that is 'extremely' healthy.. as per my naturopath and Integrative Health Doctors. I've been doing this since first surgery in April. Good news is my blood work has come back excellent... so I'm hoping all of that healthy living will support my managing chemo.
My phrase that keeps showing up. "Onward. Yoho yoho.."
Good thoughts to all of you.
0 -
Hi Ladies, thank you both for your well wishes and I hope you are doing well. I'm in Sydney and both teams that I have been seeing are very reputable and I don't believe that anyone has made any errors it's all just been a very unusual case from the start. I lost confidence in the first team because the BS would make comments that contradicted what he had said earlier so I don't think he knew how to deal with the complexity of it. My new BS knows him very well and was surprised that I chose to move teams but he is so much more definite in his plan of attack that I think that is what I needed and I'm also being guided by a very respected RO so I know I'm in good hands.
Wow FeelingtheMagic...you have certainly been through a lot too. I'm glad that your daughter is doing so well and I hope the US on your thyroid comes back "boring" as they say so good luck, I'll be thinking of you on Friday. I read through some of your posts and I see that you also have a TE, have you now finished your fills or do you need to do more after chemo? Mine were filled fully before they will start rads but I've since learned here that some doctors are waiting for exchange before rads but I think I've left it too long now to wait any longer for that so I'm hoping that I don't have too many issues and exchange can take place in the next 6 to 12 months. As for diet, I'm doing my best to include more fruits and veg and limiting alcohol to 1 - 2 glasses a week but I'm going away for the weekend with my sisters and sister-in-laws in a couple of weeks and that is definitely going out the door for those few days! Even though I haven't posted much I do still check in from time to time and my thoughts are always with all of you!
0
