Mucinous Carcinoma of the breast
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linny! Thanks for checking back with us. I wish you well on your latest chapter of your recovery. I am sure you were very pleased with your OncotypeDX score! I think that is the lowest score for all of us mucinous sisters!
Wishing you a fast and full recovery!
And....
I guess this is a good time to wish everyone good health, a happy holiday season and wonderful New Year!
I think I may have received the best gift this month! Another grandchild!
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Congratulations VC. The best gift indeed.
I wish happy holidays and a healthy new year to everyone.
A short update: I entered 23 years with MC three days ago!
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aga...23 years! Congrats to you too
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https://www.ncbi.nlm.nih.gov/pubmed/30066338
Micropapillary pattern in pure mucinous carcinoma of the breast - does it matter or not?
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Hi my fellow mucinous family
Im 28yo and have recently been diagnosed mucinous carcinoma stage 2 breast cancer and was given the option of mastectomy or lumpectomy with rt. The lump is 3cm and I'm caught in a delimma
anyone can help? 0 -
shirlyn....so very sorry to hear about your diagnosis. You are very fortunate.to be given a choice. Overall survival is the same, so, please feel comfortable knowing that either procedure will not affect survival. So, what it comes down to is personal choice. Remember though, if you choose lumpectomy, you will need radiation.
Personally, with a 1.8 mm tumor at 6 o'clock and a small breast, I chose lumpectomy and radiation. I am pleased with my decision.
Take your time and seek out several medical opinions. Remember, there will not be a right or wrong answer. Only an answer that is right for you. Good luck and keep us posted on your journey
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Thank You,
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https://www.ncbi.nlm.nih.gov/pubmed/30692486
[A Case of Multiple Lung Metastases from Breast Cancer Successfully Treated with Endocrine Therapy].
https://www.ncbi.nlm.nih.gov/pubmed/30680267
Giant Mucinous Carcinoma of the Breast.
https://www.ncbi.nlm.nih.gov/pubmed/30649385
The Genomic Landscape of Mucinous Breast Cancer.
https://www.ncbi.nlm.nih.gov/pubmed/30619463
The Distribution and Outcomes of the 21-Gene Recurrence Score in T1-T2N0 Estrogen Receptor-Positive Breast Cancer With Different Histologic Subtypes.
Glad to see so many studies!
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https://www.ncbi.nlm.nih.gov/pubmed/30396812
Predictors for Survival and Distribution of 21-Gene Recurrence Score in Patients With Pure Mucinous Breast Cancer: A SEER Population-Based Retrospective Analysis.
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Hi voracious reader, and thanks for recommending this thread.
My head's been spinning recently since my diagnosis, which is understandable. Hopefully, my surgeon will get clear margin this time. The first time he went in was just to get the lump out. This time, he needs to biopsy the sentinel node. Anyone had this done? I have to go into the hospital the day before so they can inject a blue dye...my tumor was small (1.2) and my prognosis is excellent (so says the surgeon). The oncologist I saw says radiation would be the right path for me. I am 51, just entering menopause. My mother had breast cancer when she was 74. She is 78 now and healthy. Somehow, I thought that if I got cancer, I would be post-menopausal...don't know why I thought that. What I am worried about is what if the doctor still doesn't find a clear margin? I don't want my breast removed! But I don't want the cancer to spread either.
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jag....what most people don’t realize when they are having lumpectomies is that it is common not to get clear margins and another procedure becomes necessary. Sentinel node biopsy using blue dye is also done all of the time.
Good luck. And remember, your doctor is right. You have an excellent prognosis. Hopefully, you won’terequire additional surgery.
I wish you and your mom well
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Tomorrow I have an appointment with radiology. The day before surgery, I will have a blue dye injected into my nipple, which sounds horribly painful. Can they use lidocaine while they are doing that? I hope so. I've never had to have radiation before. Can someone tell me what it's like? My boss saw me looking at information online about sentinel node biopsy and asked me not to look at it because "it might be upsetting to some people." Maybe that shouldn't have hurt me so much and I am probably being too sensitive, but I felt like she was being insensitive. Of course, it is upsetting, but I need to learn!
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jag....while everyone is different, the one thing I can assure you is that most physicians and technicians will do their BEST to make you as comfortable as possible.
Radiation....you will be given tips on how to deal with whatever side effects might arise. I had none. I kept up walking, which is my usual exercise. While I never pushed myself, I did notice toward the end, a little tiredness. I was also allergic to the lotion they suggested I use to prevent any redness or burning. Just switched to another cream and i was AOK.
I found my breast cancer team wonderfully compassionate and attentive to my needs. I expect that your team will be as well. There is, most of the time, a great sense of professionalism and understanding in the field of oncology. They seem to do a good job of weeding themselves....
Don’t be afraid to ask questions here and from your team....
And those souls that don’t “get it”.....don’t waste your good energy on trying to figure those people out....spend your good energy on getting through this active treatment phase. Your journey has just begun...ussisters won’t let you get lost!
Good luck tomorrow! Keep us posted
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jag51--I had the injections as well the day before surgery. My doctor tried to explain it to me but all I got was that there were actually 2 different injections. One before so it could move through your body and one during surgery to "follow" the path of the first one and help show which nodes were sentinel ones. The injections in my nipple were almost painless. The nurse had me lie down and just pull up my bra and when I asked her when she was going to start, she said I've already done 2! I think my blue dye was done during the surgery. I may be wrong on all this but you could clarify with your nurse.
And to hell with people. They don't know what we are going through. For some, research makes it all that much more bearable. I was one of those people!
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http://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.e12538
Is there a role for 21-gene recurrence score in mucinous carcinoma of breast?
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http://www.jcancer.org/v09p3216.htm
Distribution and Clinical Utility of the 21-gene Recurrence Score in Pure Mucinous Breast Cancer Patients: a case-control study
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I'm so glad I found you RARE Mucinous girls! We are the rarest but better prognosis concerning breast cancers than others ... thank God. But still, there's a constant fear that it'll come back. I'm scared to death to get my mammogram a year after diagnosed this June. They claim having a lumpectomy will be more difficult to find any sign of cancer lerking. My luck ... they will find something
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welcome bad luck! You had the good fortune to find us! We are here for you....
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When my cancer team told me they actually never heard of my very rare pure Mucinous Carcinoma & that it's so rare they really don't have a lot of information on it & researchers are only at the tip of the iceberg with knowledge on it but what they do know is that it has a much better prognosis than other breast cancers. My pathology report came back stating stage 2A, Grade 6, large tumor size 3.6 cm but surgeon cut out 5.5 cm all together. Nodes & margins were clear. ER & PR+ & very highly invasive. Her2-. Had a lumpectomy on left breast with 16 treatments of whole breast radiation. Now have to be on Anastrozole hormone for at least 5 years so I can reduce the chances of the cancer coming back by 99%.
Then my radiation oncologist told me he found not 1 but 2 errors on my pathology report!! Said my stage is clearly stage 1B & a B only because of the size of the tumor & if it was 2cm or less I would of been a stage 1A. He also said there was no such thing as a grade 6 & that I am a grade 1. I pointed this out to my Oncologist & she said you always were stage 1 & grade 1 & are too worried & you need to understand that you are cured now & stage & grade doesn't matter. I told her it matters a great deal to me & if I'm cured then why do I have to keep coming to you every 3 months. She said it was standard. I'm just not confident in the oncologist.
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Hi BadLuck,
I think it is time change your name, you have had 'good luck" with a diagnosis of Pure Mucinous Cancer. If you do get cancer then having PMC is a better kind. I had a PMC 7mm, Stage 1, Grade 1, Strong positive 95% ER & PR, surgery 9/16, radiation and 2 years of Arimidex. I am good so far, I have six month lab tests and US per my PCP. The Magee Equation resulted in low teens but I had a high Oncotype score. The Oncotype gave me a slightly - Pr which lead to the higher score. I had three different pathologists test my tumor for PR (IHC) and they all came out with the same reading, strong 95% + PR. IHC is considered the gold standard when it comes to that testing. It is also known that Mucinous Tumors should not necessarily be tested by the Oncotype Test. RS test results from 1200 PMC, ranging from low, intermediate to high scores showed no change in OS for mucinous tumors, according to one study. The genes used for the basis of the Oncotype testing come from the most common cancer tumors, IDC not Mucinous!
Susan
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Hi GoodLuck, that is a much better name for you I agree. Sorry you have joined us but so glad that you have found us. I have been locked out of this site for a while with computer blockages but today its letting me in. Just as well the emails still come to me so I can keep up my daily praying for you MC sisters especially new joiners. That is the time I most appreciated such quick & helpful feedback. Meanwhile be encouraged you may well get to my happy state of enjoying extremely good health & am often too busy to get to my computer when it is working. Sorry I am in a hurry as usual. Best wishes & special blessings to you all. Extra thanks to VR for all the latest articles that you send us. Istill appreciate relevant current information on MC.
Oh dear I tried to change my signature panel to Nov 18 Mgram all clear but its getting too complicated for my old brain so will try again another day. One more effort & eventually I updated it. Whoopee!
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LOL!! Yes, having the same problems here with logging in & finding my MC girls. We are for sure one of a kind. Doctors tell me we're like one in a million! Along with this rare form of breast cancer came a new medical problem that is as devastating as having breast cancer. I will try to find the link & post it on this sight to see if any of my rare MC sisters experienced it. Got to run
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Hello again, MC sisters, I've been catching up on the thread. And am going to ask, and if it's already here somewhere, please point me that direction: what's the “norm" for MC regarding recurrence? I thought after 1 year and into the quarterly checks with the MO/RO (they switch off) that I would be less likely to be facing this possibility, but here I am waiting for a biopsy to be scheduled. And of course, my anxiety will be near the surface until it's done. Laur
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Pollifax - OMG! So sorry to here that!! Hopefully the biopsy will show it's benign (nothing). My Mucinous Carcinoma was 100% pure with no mix which was even more rare. I had a very large 3.6cm tumor which made me stage 1B otherwise if my tumor was 2cm or less, i would have been a stage 1A.. Grade 1, margins all clear & lymph nodes clear. Also opted for a lumpectomy. Sounds similar to yours. They told me that any reaccurance is next to nothing as long as I stay on estrogen blocking breast cancer hormones for 5 yrs. I knew in my gut that this wasn't so true - cancer is cancer & we never know when it will just creep back. I have have yearly mammogram coming up this June & scared to death that they'll find something again
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polli...could you be more specific? Is the questionable area near your scar or another area?
Recurrence is rare. Usually, mucinous is indolent and may not return or it might return decades down the road.
That said...our teams need to be very thorough. You might have a recurrence in the area where your original tumor was located. Sometimes, there are rogue cells left in the area and that might have sprouted. Likewise, you can have a benign cyst that looks like a mucinous tumor, but because they can be mistaken for one another, a biopsy is necessary. And then there are other things that like to grow in our breasts besides cancer. So, it is hard to say what your team sees, but it is good that it is being investigated.
You know Polli, last year, I had a cancer scare in another area of my body. I was so upset, but even more pissed. Here I was, for 8 years worrying about a breast cancer recurrence and thrn I got a 5 cm tumor, which ultimately turned out to be benign, growing in my thigh.
Once you are a cancer patient, you need to get used to the fact that doctors are going to be treating us differently, for better or worse.
Hopefully, all will be well. The likelihood of a mucinous recurrence, this early, is highly unlikely.
And that tumor in my leg? That thing was very rare too. It was an intramuscular Myxoma,
Keep us posted! Will be thinking of you
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Thanks GoodLuck and Voracious Reader for your kind words and perspectives. In reviewing the recurrence info on another forum, it seemed like other types were experiencing this more often and I didn't catch any particular person posting with MC there.
VR, the MO indicated the same general area - 2 o clock - as the tumor was, but not the surgical scar - I had a very talented surgeon who placed the incision along the edge of the nipple so it is a barely distinct tracing and not right over the tumor site. My spouse reminded me that the MO is going to be super cautious about any iffy things in trying to care for me and VR you are right, we are different and will be treated thusly - not necessarily a bad thing but a response to the greater awareness of previous issues. The imaging people didn't call within the designated 2 days so I will be pestering the MO to poke them tomorrow as she asked me to do if needed.
It's just weird to be in this spot again because I had my post radiation healed-enough-to-do-one mammogram in November and it came back without any flags. I'll let you know what happens.
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polli...I see you are from Texas...Bryan? An Aggie? My younger son is a graduate of UT. He spent 8 years there and I must say I pine, one day, to live in Austin...or near Austin....or anywhere in Texas! Dallas, San Antonio, Houston...and visit Galveston.....
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Has anyone experienced Paraneoplastic syndromes caused by breast cancers. Well, I unfortunately have & they are as rare as having MC. I keep asking God ... why, why me, I've had BADLUCK all my life & don't need any more! Paraneoplastic syndromes are not caused by cancer cells directly disrupting nerve function, by the cancer spreading (metastasis), or by other complications such as infections or treatment side effects. Instead, they occur alongside the cancer as a result of the activation of your immune system. Researchers believe paraneoplastic syndromes are caused by cancer-fighting abilities of the immune system, particularly antibodies and certain white blood cells, known as T cells. Instead of attacking only the cancer cells, these immune system agents also attack the normal cells of the nervous system and cause neurological disorders. Any cancer may be associated with a paraneoplastic syndrome of the nervous system. However, the disorders occur more often in people with cancers of the lung, ovary, breast, testis or lymphatic system. This neurological disorder is as devastating as having cancer! No cure either! Makes you think real hard if you want to keep fighting or just give up.
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bad....i am EXTREMELY familiar with paraneoplastic syndrome. My husband's close friend had it. It was caused by a lung cancer. His brain was on "fire."
For those people unfamiliar with the condition, they can read the book or watch the film, Brain on Fire. The author had the viral version of the disease.
Our friend had a lung lobe removed and goes for steroid infusions every few months. The condition started five or six years ago and today I would say he is doing EXCELLENT.
Interestingly, recently, my older son had was hospitalized for SIADH and the physicians suspected paraneoplastic syndrome as the cause. They scanned his body up the wazoo beginning with a chest x ray and thankfully they found nothing! Subsequently, nothing was ever found to have caused it. He heard from many doctors that sometimes SIADH happens and no one will ever know why. Bad luck don't you think? He was taken by ambulance to the hospital and came close to dying! Thankfully, he has had good fortune since. He is well and happy. I, on the other hand am a nervous wreck. A mother's job is never done. We will always suffer worrying about our children to some degree as long as we are living. Again, I am thankful that all the happiness I get from them drowns out all of the worrying.
Bad, paraneoplastic syndrome is frightening. But, lT IS TREATABLE. Hopefully, you will reach the same state that my husband's friend enjoys. He has a great team of physicians supervising his care. His brain has been qùieted. All is well. Believe me.
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