Mucinous Carcinoma of the breast
Comments
-
Hi Greenpastures.
Sorry you are joining us.
I was initially diagnosed with DCIS with microinvasion. Many factors led me to go ahead with the double mastectomy. I really only wanted to go thru that once.
Unfortunately to everyone's surprise, I also had 2 small mucinous tumors. The lymph nodes looked clean at the time of the surgery, but the final pathology showed a micromet of 1.5mm in one node. I was still hoping to avoid chemo (because of the subtype) but my oncologist (and surgeon too) wanted me to have the Oncotype test. My scores were 23 & 26, so high intermediate, so off to chemo. My Ki-67 scores were 15 & 30.
The biggest factor for my oncologist was that mucinous tumors are usually bigger and usually don't go into the lymph node.
I am healthy and young (at least in my mind - ha! - 51) so I figured even though I am in a grey area, I will throw what I can at it. My first treatment was very uneventful. I felt lousy for a couple of days, and some minor side effects. But very doable. After tomorrow I will be halfway done.
If you have nothing in your nodes, I doubt they would recommend any treatment other than possibly tamoxifen. And maybe not even that...I really thought my conversation at my 1 week follow up was going to be a tamoxifen/no tamoxifen conversation - surprise!I would just continue to ask lots of questions, do your research and make sure you feel comfortable with what the doctors are recommending. You can always get a second opinion. Or have your case reviewed by a tumor board. Mine automatically went there because I was in a grey area.
Good luck and I am hoping for negative nodes for you!
0 -
I think I followed the 'typical' path of mucinous cancer, large 48mm lump 0/4 lymph nodes, no chemo but tamoxifen for 10 years. I have my first mammo on thurs and am so nervous already!
0 -
Thanks so much for your replies, ladies. I had no idea there was such a thing as a tumor board. I also saw in and old post that you could ask for a formal review from a hospital specializing in cancer. I'm learning so much! Thank you!
0 -
well first mammo later today, 13 mths after lumpectomy, 9 months after finishing rads. Totally bricking it as I'm still quiet tender on bad side, then it's the wait for the letter in the post with results! I wish our nhs would realise how horrific it is waiting for test results!
0 -
Good luck today Mandk! I was told my first mammo would be in december which will be 9 months after my diagnosis. I just finished rads yesterday and I couldn't imagine anything squeezing the affected one!
0 -
thank u! It was bearable, just! Now comes the waiting anxiety!
0 -
Mandskmum - HI! You are right! Waiting is by far the worst part... 2 or 3 days might as well be 2 or 3 years!
Sometimes a person has to wonder how important we are individually.( ie; labs, hospitals, Dr's, staff...) Too often anymore, so many of them treat you like a 'number', and 'how much insurance can we take advantage of', and not enough like a scared, unknowing human being... sorry...end of rant!
I only threw myself into things that truly interested me while I 'waited'. I love to draw/sketch. So I draw to keep my focus 'elsewhere'.
Hang in there! We are all here for you!
0 -
For me . . . funny movies, mindless television, walks in the park while waiting for those test results.
0 -
well for me last night it was getting drunk! Seemed to work I can't even remember going to bed
0 -
I have an oncotype score of 18 (low intermediate). I had a lumpectomy a month ago. My nodes were clear but cancer was found in the channels leading to the lymph nodes. I am 48 years old and my oncologist recommended chemo with T, C. My cancer was mucinous 3cm lump. After reading some of the posts, I am starting to wonder if chemo is needed at all. How about just tamoxifen and radiation??
0 -
laura....sorry to hear about your diagnosis. Please DO NOT guide your decision by what is said on this thread. We are here for support. Choosing a treatment plan is best decided by all the evidence and your personal risk factors. If you register at the NCCN's website and read the professional version (red logo) of the breast cancer treatment guidelines, note that chemotherapy is recommended for tumors 3 cm and greater, especially if there is lymph node involvement. Please read the guideline page specific to tubular and mucinous breast cancer. While the OncotypeDX score puts you in the gray area for benefit of chemo, it should be discussed. Perhaps a second opinion or the opinion of a tumor board might help. Furthermore, at the most recent ASCO meeting, preliminary results of the TEXT and SOFT trials were unveiled. If you are PREmenopausal, those studies need to be addressed as well.
good luck!
0 -
Thank you voracious reader for your reply. I know my surgeon brought up my case at the tumor board, but I can ask my oncologist to do this as well? My histologic grade is 3 with a score of 9 so I know that is not good, however, I was wondering if you would know the answer to the following.....if there is a high percentage of cancer composed of tubular structures, why is that a low score? Also, what is the ASCO meeting? Thank you again.
0 -
ASCO...American Society of Clinical Oncologists.
If your surgeon brought your case before the tumor board, then your case was reviewed by additional pathologists, medical oncologists and radiation oncologists. Usually, not always, mucinous breast cancers are grade 1 or grade 2 and HER 2 negative. However, if you read this thread and the literature that I provided on this thread, we have sisters who are grade 3 and/ or HER 2 positive. As you probably are aware, chemo usually works better on faster dividing cells, as in your case with grade 3. The recommendation made by the tumor board seems in line with the NCCN recommendations. Furthermore, following active treatment, if you are premenopausal, you should discuss the preliminary results of the SOFT and TEXT trials. They are looking at the potential benefit of adding ovarian suppression. Also, you might wish to discuss adding Zometa, a bone building drug if you do ovarian suppression or become permanently menopausal from chemo...that is....if you decide to do chemo.
0 -
Thank u again for all of your helpful information. I went on that NCCN site. Very informative. I am meeting with the oncologist's head nurse on Monday and will hopefully be able to speak again with the dr. I saw in italics, under your reply to me, that the dr. said you were not on the Titanic?? Is that about you? (Sorry, I am brand new to this site)
0 -
What the doctor meant about not being on the Titantic was that he didn't want me to take a fatalistic attitude. He wanted me to know that for so many of us...breast cancer is a very treatable disease. Sadly, some of our sisters do die from the disease, but for many of us, we will ultimately succumb to something else....
0 -
Just wanted to say hi Laura! That's my name too! It's a scary road to travel but as VR said read these boards but use the NCCN site to help sort it all out. We are all different and my experience will be different from yours. We can share support and that support has been priceless.
I'm a mucinous sister too. Go back and read the studies that VR has posted throughout this thread. Also is yours mixed or pure as that makes a difference as well.
Good luck to you!
0 -
Sorry you are joining us Laurara. I echo what VR said about not using these boards for treatment decisions. However, it's great for support and information that can help you understand what your docs are telling you as well form questions for you to ask. If you are unsure about the recommendations you are given by your oncologist, I would urge you to consider getting a second opinion.
(I am halfway thru my TC regimen. It has been very tolerable for me. So if you end up going that route, I wish you the same!)
Good luck.
0 -
just to report that my mammo was all clear,,,yeah!
0 -
Great news Mansksmum that's a fantastic outcome, can I say "keep it up" lots of prayers and blessings Tricianne
0 -
Yay MandK!!!! That's reason to celebrate!
0 -
Hooray for you! That is wonderful news.
0 -
0 -
So happy for you mandksmum!!!
Always makes my day to have one of us have a good report! Woot!
0 -
Great news Mandksmum!!!!
0 -
thanks everyone, finally feel like I can move on a bit!
0 -
Whenever I read or hear about a clear mammogram I cry a little bit with joy. Good good good.
0 -
welcome torny! Thanks for chiming in!
0 -
Welcome torny! Love your avatar! Are they Lorakeets?? (sp?) Gorgeous
Sounds as though you have been down this 'road' like all here. Sorry for that, but feel free to check in and add anything!
We are here for tears, smiles, laughs, sighs, fears, compassion, knowledge, support, happy-dances...just whatever makes what we are all dealing with a little less stressful! Mostly, a whole lot less stressful!
0 -
Hi All, just an quick update.
I did seek a 2nd opinion and also completed a MRI and PET scan which came out clear. The professor reviewed my findings (mostly found on this forum) and confirmed that he did not believe that Chemo was beneficial.
As i had a lumpectomy I am 2/3 of the way through radiation. So far so good.
Just want to thank you all for the contribution you have made to this thread.
Take care x
0 -
nancy - That is Great! It always feels like we are holding our breath, and get all finished, and *whew! we can catch our breath! You are correct in that there are some ladies here who are pretty wise; and BCO in and of itself has indeed been a Super support system!!!
Good news is always a positive for me; so I know you have to feel some relief! So happy for you!!!
Be sure to keep us posted! ((hugs)) and thoughts your way!
0
