Mucinous Carcinoma of the breast
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thanks
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Ginia... Please keep in touch and let us know how you are doing. You are in my thoughts and prayers along with many of our sisters.
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Ginia,
To answer your questions, nobody here can tell you whether you will die if you do nothing... It may or may not, and it is the patient's choice how breast cancer is dealt with... Also, you wanted to know how much breast tissue will be left after a lumpectomy. That will depend on how big of a margin they need to clear around your tumor. It is possible, however, (as it happened to me and others) that a mastectomy becomes necessary after a lumpectomy if clear margin was not confirmed... It sucks but it could happen.
But really, you won't find any information about your case unless you talk to your doctors. I hope you have courage to call the doctor's office and tell them what is going through your mind. That will be a good start, regardless of whatever you decide to do.
Good luck!
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Ginia, Kurorin is right, none of us have crystal balls or can predict the future. It's been a year from when I was diagnosed and I remember that sometimes I needed to get information in little bits. Then I'd need time to just be with my family, go for a walk, or watch something funny on TV. After a bit, I'd be ready for more information. What I know is that very-very soon, the information that I got from doctors was what helped me the most to figure out what to do. Talking with other women that had been through this helped me too but not as much as the information I got from the doctors and the nurses. Like Kurion, I hope you'll be ready to talk with your doctor's office as a start. Without question, this is a difficult time for you and it can all be overwhelming. Sending good wishes your way. Golden01
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Hello to all. I am 42 years old and have recently been diagnosed with Mucinous Carcinoma of the left breast. I've had several mammograms, ultrasounds, and core biopsies in the past couple of months. I'm still trying to learn what I can, and it seems that this discussion board will be a great source of information and support. I just saw a surgeon on Monday who explained to me that I have 2 tumors, about 3 cm each, and at least 4 smaller nodules, all located near each other. One of the tumors is pressing against my chest wall. I agreed with the surgeon's recommendation to have a complete mastectomy on the left breast; the right one appears fine on mammogram. He will also remove the sentinel nodes. My surgery is scheduled for Sept. 6th. I haven't met with an oncologist, yet. My tests came back ER+/PR+, Her2-neu -. I don't have the report right in front of me at the moment.
It is definitely a roller coaster ride. Sometimes, I feel like I'm doing fine, handling things well, then my spirits sink, and I just cry. I imagine it'll be that way for awhile. I'm apprehensive about the surgery, but it seems like my biggest concern is the general anesthesia. I've never been put under, and I fear that a little. I keep trying to not let my fears get the best of me, though. I also am concerned about lymphedema, so I've been reading about that. I do believe knowledge is power. I'm so blessed to have such a wide support group of family and friends, especially my DH.
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TaunTaun... Sorry to hear about your diagnosis. Please read as much of this thread as possible. Please also register on the NCCN website and download the professionals version of the breast cancer treatment guidelines. Good luck with your active treatment. Whatever it is, it will be doable despite being a novice when it comes to surgery. You are correct that knowledge is power. My only advice is NOT to over think what is unknown. After your surgery, your pathology report will give you some idea what the immediate future holds for you. Afterwards you will begin your new normal like the rest of us. We will be here and THERE for you. I promise it will get better over time.
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Voraciousreader, thank you for your positive thoughts and information. I will check out the NCCN website. I appreciate your advice to not overthink the unknown, because I have a tendency to do just that. I want to do whatever I can to get better.
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Hi Everyone,
I haven't logged in since April of this year, but I have been following the discussions. Looks like there are new members. My prayers are with you, and just know that this is a journey that you must stay on top of. I've been on a roller coaster ride since my diagnosis in Jan. 2012, with stage IIB Mucinous Carcinoma at 5.4cm. Because of the size of my tumor, the surgeon recommended chemotherapy (cytoxin/taxotere). Around April of 2012, after 3 chemo treatments, the tumor had not shrunk.
Luckily, I found this discussion board at that time, and found out that hormones are more effective in treating mucinous patients who have positive estrogen and progesterone levels and negative HER levels. I switched my team of Doctors in April, and they have been treating me with hormones. The latest mammogram and ultrasound test show the tumor has shrunk, and the mastectomy will be scheduled soon. They are saying that I will probably have to stay on hormones about 5 years after surgery. Knowledge is truly power, and I thank each of you for sharing your stories, and kudos to Veracious Reader for the insights!
I have an article coming out on my case for breast cancer month. It will be in Ebony Magazine's October issue. I encourage you to check it out!
Wishing you all much success in your journey!
DTBROOKS
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DTBrooks... I am so happy to hear that the hormones are working. My physician had told me when I was diagnosed that he thought the hormones would give me the most bag for the buck. Your experience underscores that point. I also would like to add that he also mentioned that 5 years of Tamoxifen AND 5 years of an AI might work best. If you haven't already read the 2012 NCCN professionals version breast cancer treatment guidelines, I highly recommend that you download it and read pages 92-98. There is a discussion about the current data regarding endocrine therapy.
Good luck! Thanks for keeping us posted. I will most definitely read the Ebony article!0 -
Went back for 3 month check up July 13 and found out the 3 mths. of Tamox. didn't shrink tumor at all, so surgery is set for next Friday the 7th. BS says she will do unimx with TE placement and still wants to remove all 3 levels of nodes (due to the 1 biopsied axillary node being positive and original ultrasound showing 2 infraclavicular nodes "enlarged"). However when I went back for the check up the one axillary node was smaller and the 2 infra. did not show up at all. I talked with BS about not removing the level III but she was very insistent that it was necessary for them to go. I also asked about the radiation that I would be having affecting where the nodes had been. She said that there wouldn't be radiation to those areas, levels I, II, or III. That doesn't sound right to me, has anyone not had radiation to those areas? I also wonder if the path report comes back and there are multiple cancerous nodes then will there be chemo? I did send off an email asking the BS if its possible to view bad nodes during surgery and make a decision then about removing the level III nodes. I'm not freaked out about the MX but this node thing is making me crazy!
How many with high PR/ER+ HER2- have chemo? My MO says she doesn't believe chemo will be of any use with my cancer? Has anyone else been told this? Will multiple positive nodes change this thinking? I know I'm all over the place with my ?'s and my post but the closer this gets, the more I read all these boards the more confused I get.
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KnbsAngel... I am sorry to hear that that endocrine therapy didn't succeed in shrinking your tumor. Regarding chemo, when you have the surgery, you need to request the Oncotype DX test on your tumor. The score will help you and your oncologist decide if you need chemo. The breast surgeon doesn't make that determination. Furthermore, the radiation oncologist will determine if you need radiation. I would strongly recommend that you get a second breast surgeon opinion. Furthermore, I would suggest a second pathologist review your biopsy or tumor. After surgery, you can ask the surgeon to have your case presented to the tumor board so you will have multiple opinions. Try not to proceed with the surgery in haste. Try to get as many of your questions answered before you agree to the surgery.
I wish you well.0 -
KnbsAngel... I see you went to MD Anderson. By all means ask for additional pathology review AND have your case presented to the tumor board.
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Thanks Voracious... I will definitely ask to have it presented to the tumor board. As for the oncotype will that be an option if there are muptiple cancerous nodes? I didn't think they did that if the tumor was larger (as mine is) and there were multiple nodes.
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http://ma003clu.edis.at/fileadmin/downloads/review_neoadjuvant_Dixon02.pdf
I just came across this study! It might be helpful! If the Tamoxifen doesn't work at shrinking your tumor....perhaps you might shut down your ovaries and try an AI!!! According to this study, it says that with mucinous breast cancer...it might be slow to respond to Tamoxifen and that an AI might be more effective.
Furthermore, regarding the OncotypeDX test, there is a clinical trial now being done for node positive breast cancers:
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Voraciousreader - Thank you so much for finding studies for us to read and for giving us the exact page numbers in the NCCN guidelines to to check out! I had looked at the guidelines with good intentions of going back and being sure I hadn't missed anything. You helped me get right to the parts I need. I echo everything you've encouraged others to do, especially the part of getting a second look at the pathology slides. Once I had that done, I learned I did not have the "pure mucinous carcinoma" that I thought I had. My case was presented to a tumor board as well. Thank you again.
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Golden... If it's out there on the net, these magic fingers will find it!
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I always love reading your post VR! By the way, I'm on a Wallis Simpson kind of reading jag.....just finished The Shadow Queen and then went on to read That Women. Very interesting reads!
Vikki
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Vikki...I have to admit that it is a guilty pleasure reading books about Wallis. I read my first one more than 35 years ago and got hooked on The Royal Family...and I must say... Not in a good way! Love reading books about Churchill too! One of my favorite books is written by him, The Gathering Storm. Also loved reading British author Geoff Dyer's book about The Great War, The Missing of the Somme. I can consume myself in reading about British history!!! But I have to also say... Boy oh boy... The story about That Woman... NEVER CEASES TO AMAZE ME! Makes that whole family look VERY dysfunctional! Someone should have given Diana a heads up BEFORE she set her eyes upon Charles!
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Thanks Voracious for the studies! I'm definitely going to push for the oncotype testing. I found the other study really informative and would be something to go back to the doctors with if I felt the mx wasn't the best choice for me now. I'm ready for the mx just still not positive about the nodal clearance.
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KnBsAngel... I think the take away message regarding the study is two fold. First off, it's not conclusive that Tamoxifen doesn't work. It just might take longer to work. Remember, the group that were studied we're frail and surgery was not immediately recommended, so they were instead given a neoadjuvant trial of endocrine therapy. While it would have been nice to see the mucinous patients respond more quickly, it does lend credence to the fact that endocrine therapy does indeed work. The second point from the study is that an AI works even better! Hopefully after your mastectomy you can rest assured that despite the Tamoxifen not initially working for you, endocrine therapy SHOULD BE EFFECTIVE down the road.
Good luck with your surgery! Thoughts and prayers to you!0 -
Hi Everybody!
Checking in and always learning here! I'm the one diagnosed with mucinous with HER2+, so am currently doing chemo with herceptin. Although I'm bald, (and practising the art of granting wishes with my genie look ~smile~), and fairly weak, I do want to say the protocol is very do-able.
Our belief systems, and 'what we think we know' play havoc as we consider our choices. If there's one thing I've learned it's to let go anything I believed to be true about cancer and chemo, based on hearsay and ridiculous amounts of media reports, and even, in my case, what I know from what my daughter went through dealing ovarian cancer, (because that too is very different from breast cancer); and then spend the time really learning what I truly need to know.
Cheers to all who show up here and are doing their research! You are ahead of the game, lovely women.
I'm wondering how you are doing, Ginia. Hoping you are finding the support you need as you learn about your diagnosis and options for treatment.
And just to bring home 'letting go what we think is true"... my daughter is currently pregnant! Have I told you all that yet? (Probably!!!!! Pretty excited!)
No, she didn't save eggs through an aggressive chemo. Yes, she has one ovary. Yes, chances were slim. But there you have it.. we have a new little life in the making in our lives! There are so many amazing success stories out there.
AI vs Tamoxifin is something I'll be deciding about next year after the herceptin protocol is over. Thanks for info, Voracious Reader! I'll be requesting a consult with our top doc in breast cancer in Canada before that next step. She was the one consulted by my onc, and decided on my chemo treatment.. choosing a far less aggressive one than originally recommended.
My breast surgeon is also going to continue follow ups on my thyroid. Although results came back good, there's a factor involved that she will watch, since we seem to do 'rare' in our family. Saying this especially for Ginia... your docs are there to help you.
Also genetic testing is likely for me... so my my, even more to learn about.
Hmm, it feels good to 'update' with people who actually get it. Although we'd rather not be here, thanks for being here!
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Feelingthemagic....Thank you so much for sharing your good news! I wish both you and your daughter well and look forward to hearing MORE good news once your grandchild is born!!!
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Feelingthemagic - Thank you for sharing such wonderful news! It brought a smile to my face. I learned just this morning of a family friend that has been diagnosed with ovarian cancer. Your message reminded me that I must not immediately move to the "dark side" when hearing news like that.
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I had a mastectomy of the left breast on Thursday, Sept. 6th. Everything went very well. So far, my recovery has gone very smoothly. I'm surprised that I feel as good as I do. I am not experiencing a lot of pain. I'm awaiting the results of the sentinel lymph node biopsies that were done. They seemed to be enlarged a little, but the pathologist couldn't say with any certaintly whether they were clear, or not, and whether more would need to be removed. Pathology is short-staffed,at the moment. I will be seeing my surgeon for a follow-up tomorrow.
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Had the mx on Friday Sept 7 and I back home in MS. PS decided since I do live so far from MDA and would be doing rads that it would be best not to do the TE. I was really opposed to this (mostly for vanity sake I'm a 40DD), but in the end I agreed to no TE. Surgeons said good clean margins and yes they did take all nodes.
I was in the hospital for 23hr observation and as soon as the released me headed back home, where I got some real sleep!!! (The hospital floor I was on thought it was a good idea to paint empty rooms at 1am, uh NOT a good idea!!!) I've been up and walking the pup several times today and had a shower.
No real bad pain just lost of soreness and some tingling from the numbness. The 2 drains are the biggest aggravation, those will come out when I go back Sept 19. I'll also get all reports back then.
Feelingthemagic congrats on the wonderful news!!! TaunTaun8 sounds like things went well for you too.
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Dear sisters... I wish both of you a quick and uneventful recovery. Sounds like you are both doing well!
I have been having GYN issues and had a procedure as well recently. Just want to remind you both, if you haven't already, get a baseline transvaginal ultrasound if you are taking Tamoxifen.
Hugs and thoughts and prayers!0 -
VoraciousReader - Thanks for the reminder about the TV Ultrasound. I left a doctor's office last month because I didn't have confidence in the technician that was to do the test. I'd planned to find a new GYN after my appointment but decided I needed to do it sooner. I have chosen the new doctor but haven't called for the appointment. Because of your encouragement, I'll call tomorrow!
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Golden...now you have just reminded me of something very important! My dear sisters.... LISTEN UP!!!! If your gynocologist sends you off premise for a transvaginal ultrasound, FIND ANOTHER GYNOCOLOGIST! Almost two decades ago, the gynocologists' professional organization recommended that all gynocologists have training in ultrasounds. My draw drops every time a friend tells me they were referred to a radiology practice for their sonograms. The technician in my gynocologist's office works part time there and part time at my women's radiology practice. Furthermore, when she sees something funky, the gynocologist comes into the room to examine me further. There is no exception why gynocologists should be sending women out for ultrasounds unless there is a need for a radiologist's opinion! That's my humble opinion and I am sticking by it.
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I like your humble opininons! Gives me some questions to ask when I call the new doctor's office today.l
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Golden... I am just curious to know if your new gyno does ultrasounds on the premises and if not, why? My gyno explained to me that some gynos feared malpractice lawsuits so they prefer to send patients to radiologists. My doctor prefers NOT to practice that way. I would really like to know how other gynocologists think about this issue.
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