Apr 14, 2020 09:04PM Rain88 wrote:
Wow, bbbddd, it speaks to how important it is to trust our instincts! What an incredible experience!
Posted on: Apr 23, 2009 07:43PM
On April 21st I had a core biopsy and today I was told that I have mucinous carcinoma of the breast. When I investigated on this website, the information given was that this is a rare type of cancer, about 2-3% of all breast cancers and usually occurs in post-menopausal women over the age of 60. I am neither. I am 51 years old, but still menstruate. I have an appointment with a surgeon, but feel as though I am in the state of shock. This "nodule" was found on routine mammogram and I convinced myself that it was nothing.
This may sound odd at my age, but I just recently started to enjoy and like 'these babies'. The thought of losing my breast scares me tremendously, and I have not even considered the thought of this cancer metastasizing. I won't think of that!Log in to post a reply
Posts 2341 - 2370 (2,421 total)
Apr 14, 2020 09:04PM Rain88 wrote:
Wow, bbbddd, it speaks to how important it is to trust our instincts! What an incredible experience!
Apr 14, 2020 09:09PM - edited Apr 14, 2020 09:09PM by Rain88
Apr 25, 2020 05:48PM Pink4meAgain wrote:
Thank you Rain! Although I had a decent surgery I ended up having an allergic reaction to something they cleaned the site for surgery or the skin glue they used. Had to be on 6 days of Steriods. Thankfully I did as it helped both the itching/burning and the rash both on the breast and in the SN area under my armpit. After that healing went well. The only real remaining concern is a large hard hematoma in the area that the tumor was removed. The surgeon isn't concerned as he said the body will reabsorb it...this is via phone. Both the Oncologist and the Radiation Oncologist have seen it via video Dr Appt. Hopefully it doesn't become a huge issue. Anyone else have a hematoma about 2 weeks after surgery?
Found out on Friday I will only need Radiation and Hormone Therapy (Letrozole) after Radiation. My oncotype score was a 5 so Chemo isn't something that would make a difference.
Apr 26, 2020 02:16PM - edited Apr 26, 2020 11:19PM by Rain88
Hi Pink. An allergic reation, hmm... that's something I have never thought of in conjuction with surgery. I am sure it was very unpleasant to deal with. Good thing you got it sorted out. I had a bad hematoma after lumpectomy. My BS said I should massage the area to help it heal. It surely had me worried, as you know we are on such high alert once diagnosed with BC. I still have a hard spot in the area of the surgery (six months later) and I'm assuming it is scar tissue. I will ask about it at my next follow up. I am happy for you that you have a low Oncotype score!!! Now off to the next step of the journey. Best of luck with rads! Hugs and love!
May 11, 2020 12:30AM voraciousreader wrote:
Mucinous Carcinoma of the Breast: Clinicopathological Features and Long-term Prognosis in Comparison with Invasive Ductal Cancer; A Single Hospital's 30+-Year Experience.
May 11, 2020 12:33AM voraciousreader wrote:https://www.ncbi.nlm.nih.gov/pubmed/32358590
Mucinous carcinoma with micropapillary features is morphologically, clinically and genetically distinct from pure mucinous carcinoma of breast.
May 11, 2020 12:37AM voraciousreader wrote:
Aggressive behavior of Her-2 positive colloid breast carcinoma: A case report in a metastatic breast cancer.
May 11, 2020 12:44AM voraciousreader wrote:
Comparison of the Distribution Pattern of 21-Gene Recurrence Score between MucinousBreast Cancer and Infiltrating Ductal Carcinoma in Chinese Population: A Retrospective Single-Center Study.
May 11, 2020 12:45AM voraciousreader wrote:
Clinicopathologic characteristics of HER2-positive pure mucinous breast carcinoma: a systematic investigation into an unusual tumor.
May 11, 2020 06:35PM Rain88 wrote:
Thank you, voraciousreader. It's mind boggling the variations within this already rare type! As well, I find it scary how easily they might be undertreated just because of the mucinous feature.
May 11, 2020 07:02PM voraciousreader wrote:
Rain...i think medicine is beginning to recognize, thanks to genetics...that most illness is on a spectrum...
as you can easily see with covid 19, the virus presents differently with each person it infects. some people are symptomless, while others become critically ill and others die. And...as it mutates, there is research that says it is becoming more virulent, while other studies suggest it is losing its potency.
Mucinous breast cancer, like all “rare” types of breast cancer share clinical characteristics with garden variety types of Breast tumors. Moreover, what recent studies suggest, is, site cancers, breast, kidney, colon...etc...are no longer looked at in singularity. For example, mucinous cancers are found in other parts of the body. Some kidney cancer cells may genetically look like lung cancer cells. Clinicians are now recognizing that certain cancer drugs developed for one type of cancer can be used for a cancer in another organ.
The more you read about cancer, the more questions....
May 11, 2020 08:47PM - edited May 11, 2020 08:49PM by tricianneAust
I am so sorry fontalucy that I missed answering your question about Vit D. Too much going on in a very hectic fairly healthy life is my only excuse plus I had to look up my results. Had Mucinous Bowel cancer in 2001 (whoopee thats 19 yrs ago, & just caught in time b4 it spread). I have osteporosis & Vit D was first checked with that in 2011 it initially was 45 so GP gave me Vit D supplements next test was 70 then in 2013 it was 65. Now with our Medicare where GPs get told too many Vit D tests! testing an be too often .As am vigilant about taking Vit D & try to supplement via regular un-screened time in sunshine & diet GP is not concerned I think my next update for testing Vit D is 2021
May 11, 2020 09:02PM tricianneAust wrote:
Hi Voraciousreader I jumped on here to reply to your comment about getting Mucinous Cancer in other organs too. As you may remember the first MC I had was Bowel in 2001 and quite a virulent MC that one was, it was caught very early and was still contained in the polyp & had not then spread to the nodes so did not metastasize. I still shake when I read the pathology on how cancerous the polyp was. Then 9 years later I had MC in the left breast. I haven't seen others on here who had had MC in more than 1 area so am interested if others have experienced this. According to the Oncologist at the time they investigated how the two were related and they determined it had no direct relation to the bowel cancer & was my genetic predisposition to MC. Not sure how correct that assumption is. Continued prayers for all my MC sisters as I sit at my computer you come to mind.
May 11, 2020 09:23PM voraciousreader wrote:
tric..let me begin by saying....mucinous cancers strike different parts of the body. Some are More virulent than others depending on the location. That is what the folks at sloan kettering are trying to understand. Why? With that said, for all intents and purposes they are distinct cancers, within the family of mucinous cancers. What I was referring to is that researchers and clinicians are now discovering that genetically, some cancers in different parts of the body are similar in as much as they respond to the same medicationS. So, a breast cancer medication might work on a kidney cancer....So...there is a shift in how cancers are now being perceived and ultimately treated...
On a side bar....i will give you an example in a completely different area of medicine. The DH has a genetic metabolic disorder. Back in the day, he was treated by physicians in the specialty of “Inborn Errors of Metabolism.” It was a sidebar of Pediatric Endocrinology. Today, IEoM no longer exists. Today the specialty is called Medical Genetics.
As we understand illnesses, medicine evolves....
May 11, 2020 09:26PM Pinkywave wrote:
Hi everyone. I posted the same post in the other thread but someone told me to join this thread because of my type. I’m hoping to get some inputs. Thank you in advance
I have stage 2 breast cancer (T2, N0, Mx), grade 1, Ki-67: 0-5%. ER/PRpositive, HER2 negative. Diagnosed on 03/17/20, had lumpectomy on 04/21/20, negative lymph node but got positive margin. I was initially told that my tumor was 1.2cm but it turned out to be 4.3cm and besides my primary tumor (mucinous carcinoma, micropapillary : grade 1), they also found extensive DCIS (grade 1-2). So now I'm considering having mastectomy, hopefully skin-sparing mastectomy, but my surgeon says he only performs total mastectomy and if I want skin-sparing, he needs to refer me to someone else.......If I'm ok with total mastectomy, I can have it done in 10 days. I'd like to explore my options, but I certainly don't want my remaining cancer to spread. So my question is, how long is too long to wait to have re-excision after lumpectomy with positive margin?
Also, I know Mucinous carcinoma usually has good prognosis but how about when it's mixed with micropapillary? Does anyone have same condition as me? I'd like to know!! Thank you so much❤️
May 11, 2020 09:36PM voraciousreader wrote:
pinky...scroll up around 10 comments. Last night I posted a study on micropapillary mucinous bc. Regarding your situation and how aggressive it might be, you are a candidate for the OncoypeDX test. That should give you more info. Based on hour path report, you have excellent prognostics. Regarding how long to wait, you should discuss that with your team. That said, you should get another consultation to discuss the option that is best for you. If you want to consider skin sparing, you should be accommodated.
Jul 7, 2020 11:15PM Rain88 wrote:
Hello, ladies. I hope everybody is doing well. I thought I would come back with an update. I am really happy to say that my mammogram, 6 months post radiations, is normal!!!🤗
I was wondering if anybody else with the same characteristics: E&P+ HER2-, Grade1, no node involvement, clear margins - had a bone scan. I will have one to check out an ache I noticed post radiations. I don't know what to make of it... The ache came up during my discussion with the MO, who said they'd like it checked out. First it would be a bone and then a CT scan. I am not overly concerned, but it is on my mind a bit. I would appreciate to hear about similar experiences.
My best wishes to you all!
Jul 13, 2020 08:05PM obsolete wrote:
Hello Rain, Congrats on your good mammo results. It's understandable for us BC sisters to worry about sudden chronic pain. I'm going on almost 7 years, and my past mystery pains had involved shoulder pain, lower back pain and neck pain. It ended up being ortho & spine related issues, however I was never taken seriously by my MO's and thus I've never been scanned. Luckily it was shoulder cuff, muscles and disc related issues which have since resolved with treatment. Because my joint & spinal pains had not worsened at night, reportedly a common tell-tale sign of bone mets, I wasn't taken seriously, even though I had Grades-II & III BC with multi-focal 8mm mixed mucinous, 3cm invasive solid papillary and multi-centric DCIS. I also had lung pain associated with double pneumonia which resolved.
You must have a great medical team who practices careful regard in checking out your every ache & pain. I wish you well and please let us know how you do. Best wishes.
Jul 13, 2020 11:43PM Rain88 wrote:
Thank you, Obsolete. 7 years out sounds fabulous! I am happy for you and it is so encouraging for all of us! I couldn't help but gasp at the complexity of your diagnosis. It is surprising they didn't recommend additional scans in the beginning and then later on because of the pain you were having. I mean, how could they be sure...
Regarding the ache I was refering to, it actually does get worse at night. This must have set off a few alarm bells when I mentioned it. That and the pain I have in my legs, which I put it off to Tamoxifen SEs. To be honest, I was taken aback to hear they wanted me to go for a bone scan, but I guess, as you said, I must have a really thorough RO, I can't complain. I will have to keep my mind occupied until it will be over. As you know, it's simply impossible no to get funny ideas...
Thank you again for sharing your experience. It is reassuring to hear that there can be all sorts of pain and issues that are actually something else then malignant cells roaming wild in our bodies.
Sending you my best. 💓
Jul 15, 2020 09:53PM obsolete wrote:
Rain, please take comfort in the fact that it's uncommon for mucinous, especially Grade-I pure mucinous, to spread regionally without node involvement & lymph-vascular invasion. To score a Grade-I your tumor must have had many favorable characteristics.
I'm sorry that I didn't mean to imply that bone mets is the only condition which is associated with stronger night time pain. If you research the types of arthritis & osteoarthritis, you'll find that some can cause pain to worsen at night due to painsomnia and sensitization of the central nervous system. Rest well and sleep well as you apparently are in the hands of a great medical team who will help you get to the bottom of your aches and pains. It's something that we all must deal with as we get older. Good luck!
Jul 16, 2020 10:56AM Rain88 wrote:
Thank you for your kind words, Obsolete (I love your screen name!). No worries about your message. I was really glad to hear from somebody else that it's not uncommon to have all kinds of pain, aches and discomfort. The pain I have might very well be arthritis. (Thank you for the articles.) I'll let you know once I know more. Best! 💓
Jul 23, 2020 09:17PM Rain88 wrote:
Hello everyone, I hope everybody is doing well.
I,m back after I got my bone scan results. It got me very worried, as it states that early bone mestastases could not be excluded. I guess I expected an "all normal" bill. I have an appointment wiht my MO in a couple of weeks and I hope he will provide clarification. Are these findings common? Do bone scans routinely show several hot spots? I wonder if anybody could tell me if their results were inconclusive or similar to mine. The following is stated under the IMPRESSION: "No prior bone scan is available for comparison. The small focus of mild increased uptake in the right approximate ninth rib laterally is statistically more likely a prior bony injury than a site of bone metastasis and small foci of slight increased uptake in the lateral border of tight scapula ad right temporal bone are probably bening bony process but early bone metastases for these foci of mild uptake could not be excluded. Short-term follow-up bone scan in 3 months is recommended if clinically appropriate. Focal mild increeased uptake at the L4 vertebral body anteriorly is probably degenerative bony change and could be reassessed on the recommended follow-up bone scan." Knowing me, it's going to be a few rough days until I will be able to settle my worring.
Aug 14, 2020 12:57PM Rain88 wrote:
Hi, Obsolete. Just wanted to let you know that I finally had a phone appointment with my MO to discuss the bone scan results. The scan is pointing at 3 "hot spots" (one rib, the spatula and the temporal lobe near the mastoid area) that need to be revisited, as mets could not be excluded. As well, the L4 vertebrae had a mild uptake. My MO is inclined to think that these are benign findings, but when I pressed, he admited that could not completely exclude malignancy. So, we decided that the best course of action was to have another scan in 3 months and go from there. I hope you're keeping well and enjoying the summer as much as possible given the current situation.
Aug 15, 2020 01:32AM tricianneAust wrote:
Thinking of you Rain88 as you await the next scan in 3mths time. Praying that these will be healthy results for you. It can weigh heavily on your mind meanwhile. Covid is quite enough to deal with for you without adding additional concerns. I am getting a bit of a break from counseling as the anxiety from Covid has decreased considerably in South Australia. We are now praying for more rain so we don't head into this next summer with drought ridden country. Its looks like your summer over in USA is proving very hot and bush fire prone. We fear another very hot summer here after such an terrible bush fire year 2019/20.Many blessings Patricia
Aug 15, 2020 01:58AM tricianneAust wrote:
Hi Voraciousreader .:I must apologise for not having replied to your kind reply on May 11th regarding the adaption of treatments for MC in one organ being applicable to other organs.I have just reread the entries for the last couple of months & found the mental reply was never actually typed. I do appreciate your knowledge & expertise in the MC area. Covid was keeping me so busy in several areas of counselling plus I had a couple of Child Protection support issues going which were having complex legal issues that were very time consuming & rather overwhelming. Thank you for your continual support & quick valuable replies over these last 10 years coming up in October. Apart from very painful osteoarthritis & osteporosis I am in good health myself. Covid hasn't had a 2nd wave yet in South Australia so things are comparatively under control her & less pressured. Whereas you seem to continue to have lots of Covid problems in USA if our media can be relied on.Blessings on you all.
Aug 15, 2020 03:25PM - edited Aug 15, 2020 03:26PM by voraciousreader
tric...thank you for all the good works that you do on behalf of others! I am sorry you live half way around the world from me! If we lived close to one another, we would undoubtedly be good friends.
regarding the arthritis....you don't have to suffer! I got a new hip in May of '18 and with little to do outside of the home now thanks to Covid, I can now walk through my neighborhood, PAINFREE. Most days, I walk 13,000 steps. That's over 6 miles. In June, I had surgery to fix arthritis on my right thumb. I had had surgery to fix it and my wrist last September, but the surgery “lite" on my thumb was unsuccessful. I was rescheduled for surgery in March, but SURPRISE! Covid hit New York and my surgery was cancelled. Thankfully, surgeries resumed in New York in June and I got my finger fixed. For me, since I have Ehlers Danlos Syndrome, surgery is often necessary because the disorder is very hard on joints. I am blessed to have amazing orthopedists who accommodate me and resolve my pain.
with all of that said, I hope you and all of our sisters are able to get the necessary screenings and medical attention that we all need. I had my annual gyno appt in April and saw my internist/cardiologist twice since the pandemic began. I also had a video appt with my pain management doctor as well.
Stay well dear sisters. I know it is hard work!
Aug 15, 2020 05:32PM - edited Aug 15, 2020 05:34PM by Rain88
Thank you, Patricia. Your thoughts and prayers are well received. I can only imagine how difficult things are without enough rain, especially after the recent fire and during these unprecedented times. I am glad to hear that the pandemic is well contained over there. I am in Canada, where we are getting ready for a new school year. There are quite a few debates going on over the best plan to esure a safe return to school in September for children and educators. (The schools have been closed since March, and we did distance teaching/learning.)
The results of the bone scan weight a lot on my mind, but one learns to live with many things. I am mostly greatful it is not worse and that it occured at a time when my children are already grown.
This forum has been a God sent. Initially, I was able to find only a British forum, from which I actually learned a lot about MC, especially from Jolameen, who, like you, was diagnosed a while back. Thank you and voraciousreader, obsolete and all the ladies who keep it going. Best wishes and lots of hugs.
Aug 20, 2020 10:31PM obsolete wrote:
Hello Rain88, thank you for updating us on your current bone scan situation. You certainly are to be credited for bravely advocating for yourself and for facing scan uncertainty with such courage and grace. Please be assured that the next 3 months will fly quickly so you can look forward to peace, comfort and tranquility thereafter. Another option is a blood test which might possibly provide you with some level of relief a little sooner. I've heard that blood calcium levels is the main marker to watch.
"Your doctor also might order a blood test to check for high levels of calcium or alkaline phosphatase (ALP), another substance that can be elevated due to bone metastasis."
I truly admire BC patients who are able to view scan anxiety or false positives as bumps in the road or as one of the many lessons of patience in life. Rain, you are one of these people and I admire you. Everyone, enjoy the rest of your summer, and best wishes and stay safe!
Aug 21, 2020 10:47AM Rain88 wrote:
Thank you Obsolete for your kind words of praise and encouragement. Coming here and reading such messages makes me feel understood and it eases my ever wondering mind. I will for sure ask my RO to look at my calcium levels. Thank you very much for the link! I'm off to reading it. Hugs and positive vibes,