Mucinous Carcinoma of the breast
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voraciousreader--My sister, who is just 1 year younger than me, is about 125 pounds overweight, hasn't seen a doctor in who knows how long, probably hasn't had a mammogram in 10 years (she's 53) and pretty much exists on cookies and candy has no health issues (so far, knock on wood) and yet here I am with BC having stayed at a healthy weight all my life. It is such a crap shoot.
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inf...sorry you joined us...yes...we have patients diagnosed in all age categories, despite it once being referred to as an older patient’s illness. And 70 pages? i hope it was worth your while!
Lala..crapshoot....hmmmmmm...I guess so.....but what is really frustrating is how we yearn for answers to unanswerable questions. I think we must all make peace, somehow, with ourselves and accept that sometimes there will never be a way of knowing what we have done and what we might do that will heal us.
I have said this many times, I measure my strength in my ability to let my MO do the worrying for me. If he thinks there is something that I must do, I expect him to tell me what it is and I will do it. I know I will NEVER be an expert at cancer and it is his EXPERIENCE that I depend on. I will go on living like I did before my cancer diagnosis. If I didn’t, then the cancer would be the winne
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this new study speaks to what I said earlier about metabolizing food and health benefits
The Complicated Biology of Garlic
https://www.sciencedaily.com/releases/2018/04/180426130048.htm
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why she dint get the tumor remove
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VR,
Thank-you for that link on garlic. I have been adding garlic to my salads on a daily basis after reading that it is one of the most potent cancer fighters in the vegetable world. I don't know if I'm reeking garlic, no one has said anything to me. I think it will be a while before doctors completely understand how to increase the bio-availability of garlic, unlike broccoli where research has uncovered methods to increase the bio-availability of sulforaphane. It's so good to see studies like this. The research by Dr. Eliaz on Modified Citrus Pectin is also huge.
My husband also comes from a Jewish background. The health issues on his side of the family are too numerous to mention. His mother, for instance, had severe scoliosis, then later in life suffered diverticulosis, graves disease, goiter and then developed cancer. The poor woman suffered so much towards the end of her life.
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Hi all. I am 42 and I was diagnosed 1.5 months ago and, since then, I've been researching and studying all I can find about mucinous carcinoma. So far, I have read the 2.105 posts on this topic and I have read all of your journey since 2009. This topic has been my lifeline and the major information source. Thank you all.
I've always had my yearly breast medical review done, since I have an aunt who died from breast cancer at 52. A year and a half ago, I felt a lump in my left breast, headed to the doctor and had all the images done, I was told it was a 2cm benign cyst; since my breast had always had dense images and multiples lumps and cysts coming and going, I was ok with the diagnosis.
3 months ago, I went to my yearly review and the lump had grown, I was advised to do a biopsy and the result came back in march with the diagnosis of mucinous carcinoma, multifocal, there were 4 lumps; the biggest one is 3.8 cm in its largest dimenssion and the smallest one is 1.3 in its largest dimenssion.
I had a LMX three weeks ago with TE placement, still recovering at home, I am a mum of two little boys (9 and 4 yro.) but I have great support from my family, specially my husband, mum and sister.
I'm in a grey place regarding treatment, since I had many lumps and one of them was at <1mm from my chest wall, despite all the margins from surgery were clear. I don't know if I will have chemo or radiation before endochrine therapy. I have my appointment with the oncologyst on may 28. Also, I will have genetic advice done to decide about a prophylactic right mastectomy.
I've needed psychiatrist advice to deal with my diagnosis. I am a very private person and found very difficult to vent my fears and sadness with my friends or family, that said, thank god for my dear psychiatrist. What I find hardest about this cancer diagnosis, now that I know it has a good prognosis, is the fact that I won't be able to be mum again. My husband and I had been trying for some time to have our third child, and now this will never happen, and it breaks me through tears anytime I think about it.
Aaall of this said, I have a question and hope you can help me. The first biopsy, ran on the largest lump, came up as grade 1, bilaminal A and its IHQ values were ER+ 100%, PR + 75%, HER2 -, Kl67 10%. The biopsy of the 4 tumours together after surgery upgraded them to grade 2, hypercellular (which I assume means bilaminal
pure mucinous carcinoma, but the IHQ test hasn't been ran on this sample, and I've been told that it wont be because it was done on the first one. But as the tumour has "become" a little mote agressive through biopsies, should I push on this secondIHQ to be ran or it's not a big deal??Sorry for my mistakes in case there are any, english is not my fist language.
I thank you so much for being there and I wish you well.
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Hi MonMadrid,
Thank you for finding us, as we are many on this thread who are willing to help and support you with our rare mucinous subtype. Your grasp of English language and your command of medical understanding are most impressive! But, I am very sorry you had the need to join us MC sisters.
In reading your post, I saw so much of my own journey reflected in your words, so please know that you are not alone. I'm also another Grade-II multi-focal MC, so please take comfort in the company of this group.
It's been recommended by professionals that all MC sisters request 2nd opinions on surgical pathology from dedicated breast pathologists. From my past multiple pathology reviews, I had learned that tumors can have a high degree of heterogeneity with varying phenotypes. I also had both Grade-I & II with similar values to yours, but with Mixed Mucinous in the mix.
Because of the major confusion I, too, had experienced, I hold no regrets about my past bilateral mastectomy, which has given me so much more inner peace and emotional relief.... but that's only my personal experience. Everyone is different, as you know.
Sending you well wishes as you recover from your surgery and lots of hugs!
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great advise and comfort obsolete.
Get a second pathology opinion and request the OncoyoeDX test. Also ask for a tumor board to review your tumor as well.
Regarding being a private person....I am an extremely private person. I get how you feel. Glad you have a great psychiatrist helping you navigate your journey. I told very few people. I never told my mom who is now 93. I found sharing my journey with family and friends was something I just didn't feel like doing. I know some people draw strength from telling others. Not me. Looking back, I have no regrets.
As far as having a third child, I just want to say one thing. Life has a way with interfering with life. That said, I believe a higher authority granted all of us with resiliency. Some of us sometimes feel we weren't dealt enough of it. But as you journey through life and life unfolds, you will see thru the rear view mirror, how much resiliency you were given and then marvel.
I wish you the best......
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Well the pre-op screening went to hell in a handbasket. The EKG at the surgeon's office came back abnormal, so I got referred to a cardiologist, who repeated the EKG, said I'd had a heart attack some time in the past, and now wants an echocardiogram and nuclear stress test before he can clear me for surgery.
On the drive home (3 cities away), the gastroenterologist called, and THEY
want me back for CT or MRI because the abdominal ultrasound showed a lesion on my liver that "could be" just a cyst. But to go ahead with the BMX before following up because after all, MC is the "best" cancer because it "doesn't" spread.Considering how the rest of my routine screens have gone this year, I'm not entertaining any illusions that everything is actually fine.
FML, seriously.
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pussycat...omg! Hope all goes well with your cardiac issues....the good news is that they will treat and monitor you! In general, women are more likely to die from strokes and heart attacks. Sadly, we, women, are not monitored like we should be. Hopefully, now that you know you have an issue, you will NOT be among the statistics!
Regarding your liver, now that you have a breast cancer diagnosis...every little thing that goes on in your body will be suspected as cancer. A few weeks ago, I had a tumor removed from my thigh and until it was removed and biopsied, it was suspected as cancer. The good, or bad news, going forward, once a cancer patient, always a cancer patient...which means we will always get aggressive care......
Keep us posted.
Thoughts and prayers to you...
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VR thanks for the words of reassurance. I really hoped that I could go back to my retirement travels with as few new medical needs as possible. How on earth does a person have a heart attack and not notice?
The only good news yesterday was that my stomach ulcers were negative for H. Pylori, so no (additional) antibiotics for that, and thankfully no flagyl either.
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pussycat....i have a lot of knowledge about heart attacks....i will let you in on a secret....sometimes people drop dead from heart attacks and their loved ones are SHOCKED because the loved one had “never” had a heart attack. However, when they do an autopsy they notice scar tissue on the heart. Scar tissue on the heart means the person had a previously UNDIAGNOSED heart attack. The attack may have been mild and the person may have mistook the pain as acid reflux. Sooooo whatever caused the heart attack, such as a blocked main artery, goes undiagnosed until the person has the major heart attack and dies.
Now....with women, it can be tricky. Many women who have heart attacks DO NOT present the same way as men....perhaps a little jaw or back pain may be their only presentation. I have a male frind who had dental work done and the following day he had a tooth ache....he went to the dentist and the dentist called 911. Thankfully, he survived a major heart attack.
You, my dear sister, are EXTREMELY fortunate. Diagnosing a previous silent heart attack has saved your life!
Good luck and, keep us posted on all fronts!
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for the info VR. The only thing that comes to mind was a bad heartburn about 8 years ago. After waiting awhile and it got worse, I asked my husband to take me to ER. They did an EKG and said it was normal, gave me a shot of Protonix (PPI) and sent me home. After a lot of readings about MIs, the EKG should be obviously abnormal during a heart attack, so I guess that was just heartburn.
Maybe the echo and nuclear imaging will provide more info. Till then I'm trying not to panic at every little twinge.
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faster....did they take blood when you had the heatburn? Early in a mild heart attack, the EKG might be normal. However, the blood work is the gold standard. If you have a heart attack, the heart, which is a muscle will throw off muscle enzymes which will be picked up in the blood. The test is measuring those enzymes. If they are elevated, then one has had a heart attack....
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This is an older study but confirms what I am referring to. Sometimes you have a normal ekg and yet you had a heart attack. Eight years ago, this test wasn’t available, and the blood test wasn’t as accurate as it is today.
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VR thanks for the links. No, I don't recall them doing a blood test at that time. I know that my mom had that test when she was taken to hospital after a car accident when she was 56, for what she thought was a bruised rib.
They confirmed that she was having a heart attack. I guess their spidey sense was better where she lived at the time than it was for me. She now lives with mitral valve regurgitation and can't have caffeine or have her head lower than her heart.
I'm having the chemical stress test first thing Monday along with nuclear imaging. I guess my arthritic knees disqualified me from the treadmill version.
Echocardiogram Tuesday.
Cardiologist followup appointment Wednesday to see if I'm cleared for surgery, then if so, lymphatic mapping right after that, then surgery Thursday morning.
The waiting before all these complications was bad enough. Maybe not the healthiest coping strategy but I'm making full use of my CA Prop 215 recommendation.
Edit: Also, where I lived at the time, the hospitals assumed anyone coming into ER was a drug seeker or mental health case unless proven otherwise. Not an entirely bad strategy given the demographics, but not great for when someone's actually sick.
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pussycat....this is a good time to remind our sisters if they have a family history of heart attacks, it would be wise to begin seeing a cardiologist at age 40 or younger if the relative had a heart attack at a young age. I tell friends to have a baseline ekg and have a relationship with a cardiologist so that if you end up in the ER and they ask you for the name of your cardiologist, you have the name of one. My dad died young after having several heart attacks, so I see a cardiologist who is also my internist. The DH also has a host of cardiac issues and arguably sees one of the top cardiologists in the country. He does a hard job of keeping the dh vertical and we joke that he has to keep the DH alive so the folks who study him in a clinical trial can continue collecting data on his body.....
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want to also point out that female cardiology is a completely different beast than male cardiology. The treatment evidence for men is well documented....for women....not so much...
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The pre-op EKG that turned up abnormal ended up okay. The nuclear stress test and echocardiogram verified that there were no blockages and no evidence of current or prior injuries to my heart muscle. I'm just one of those healthy weirdos with a scary looking EKG. That was a huge relief, obviously.
Last stop today after the cardiologist was lymphatic mapping in preparation for surgery. It's not as bad as it sounds, at least for me.
My double mastectomy for invasive mucinous carcinoma (right) and ductal pappiloma / sclerosing adenosis (left) will happen as planned first thing tomorrow. No reconstruction as I'd rather go without the extra surgery and radiation that would be required for lumpectomy / reconstruction.
All the medical people I've dealt with so far have been wonderful. Very compassionate, knowledgeable and nice. That matters a lot during such a stressful time. This community too has been great for keeping my spirits up, so thank you all.
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great news! Pussy! Glad you posted. I wondered how you were doing....good luck with your surgery! We are here for you as you take your next step on this journey...
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btw dear friends....this week I finish my hormonal therapy! Done! Yay! My MO said I could see him annually! Big yay!
Still waiting to hear back from MSK....don't lament. They are busy and run from one symposium to the next when they are not in their lab.
And finally...2 weeks post hip replacement surgery! VR feels GREAT! Horrific pain is a faint memory....lots of PT ahead...but hey....haven't we all had harder journeys?Thanks for everybody's kind words of support. Your individual journeys make all of us stronger......that, I am sure of!
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All done, nodes clear (pending actual path report), now resting at home. Drive thru surgery FTW. I feel like I did way too many pushups so I guess my pecs are all spazzed. It only gets better from this point.
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dear All,
my 73 years old father had a Mucinous Carcinoma before 7 years and he get a mastectomy and chemotherapy and Hormonal treatment . after 7 years we found a tumor recurrent and the pathology report as the following "consist with mucinous carcinoma recurrent .
not:maximum tumor size in this biopsy is 1.1cm in the breast tissue ,however the separate fragments submitted ,also mucinous tumor and measures in aggregates 1.6cm.
-the tumor has well defined margins ,however focal infiltration into fatty tissue is noted
-margin of excision cannot be evaluated properly as there are separated tumoe fragments in the container .
-no lymphovascular invasion seen
no perinrural invasion seen in this material.
the larger piece with attached skin show no evidence of malignancy. "
now i am so worried about this and i cant stop thinking about this and i am so sad .
kaindly if there any one can tell me the status of my father and what is the case exactly .
thank you all for helping in advance
for more information about the case contact me via PM
Edited by Mods to remove personal identifiable contact information.
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Hi All. I hope you are doing well. Voraciousreader, obsolete, thank u for your wise and kind words. Voracious, congratulations on your finishing therapy and pain relieving surgery!
Today I had my appointment with the oncologyst, and he was honestly shocked that the patology report didn't include the IHQ of the four tumours. We have decide to send my sample to another experienced pathologist, and it makes me feel relieved. In 10 days we will have the complete information and decide about treatment.
Also, my PR response was (-) -- there was a mistake in my first post, sorry for that-- what makes the tumour a little more rare, so having a second opinion seems imperative now.
Besides, we are getting the genetic test ran on my sample; my oncologyst thinks that mamaprint is more validated for mucinous tumours than oncotype, but I haven't asked him why. I have the feeling that this is a kind of tendency in Europe, that oncologyst prefer mamaprint vs oncotype, but maybe I'm wrong.
I've had some troubles on my recovery post mastectomy, since I caught a flu and it sent me again to bed, finally I seem to feel better now that I' ve been prescribed anthibiotics again.
Thank you all for being there. Pussy, good luck on your recovery and treatment.
Kisses to all.
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madrid....sorry the flu caught you! The worst! Hope you are feeling better.
I would also recommend a tumor board review your case. There is a pathologist on the team, so that way, you will have three pathology opinions in addition to the mamaprint. My tumor was close to my chest wall. They weren’t too concerned. They thought radiation would take care of that issue.
I think you shoukd also familiarize yourself with ovarian suppression. Please look at the SOFT/TEXT trials. And please read the NCCN breast cancer professional guidelines. There is a page devoted to tubular and mucinous bc and there is a footnote that mentions the trials.
Keep us posted
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ibrahem....
Sadly, some mucious tumors do recur. It is not often. But, it does. From what you posted, all seems to point to your dad doing well. No lymphovascular invasion is a good sign. I think he will be offered radiation this time and that should do the trick.
You sound like a lovig child. I know you are sad and frightened. That is a very normal reaction to a loved one's recurrence. Please consider a support group for family members if your feelings get too tough to handle. And of course....we are here for you and him....
Gentle hugs, thoughts and prayers to both of you...
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MONMADRID, sending you special healing energy to help you recover while your immune system is strengthening.
FASTERPUSSYCAT, congratulations on clear nodes. You're correct in that it only gets better and better following surgery.
IBRAHEM, so sorry to read about your father's perceived recurrence. "Focal infiltration" is much better than "multi-focal", as this implies it's confined to a single area rather than multiple areas. As VR astutely mentioned, no evidence of invasion into vascular and lymphs is very positive news, as well as no perinrural invasion also. Perhaps your dear father's presentation is not actually a true recurrence, as 2nd mucinous tumor or multiples could have been originally missed in imaging 7 years ago. It's not uncommon to initially present with multiple mucinous tumors, some of which could have been too tiny to have been seen in imaging (mammography, MRI) in both breasts. There's really no way of verification, however. Hoping your father will keep his spirits up.
Warmest wishes and hugs.
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Hi all. I am Ann from Hong Kong ,age 37. Just diagnosed with Mucinous carcinoma stage 1, 1.2cm, grade 1, er/pr+, 0/4 nodes, half an year ago.
Finished lumpectomy, radiation and now on tamoxifen.
In these few months, I keep updating this forum and read near all of yours message, it give me very useful information.
However, sometimes I still can't control myself to feel worrying or anxiety especially when I feel not very well physically, e.g. I would have some back pain sometimes (but it last for more than 10 years indeed)
Reading many information and said Mucinous is not easy to metastasis, or it will happen very long time after first diagnose. I am force myself don't think too much in negative way.....
In past half year, my emotion go up and downs. I actually become much better comparing with the worst moment especially when I read more and more positive message from all of you.
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ann....i am so glad that you found us. Please feel free to comment whenever.....must have taken a lot of strength to post! If your emotions get the best of you, let your team know. I know how hard it would be to find a support group of mucinous sisters....nonetheless, I encourage you to speak to your team. With that said, you do know that you have GREAT prognostics....the further you move away from active treatment, I PROMISE....the easier it will get. Not easy....but easier.....I am eight years away and while it seems like I was diagnosed yesterday, the years do make it easier on the emotions...
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