Mucinous Carcinoma of the breast
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Unbreakable- You have my prayers for you and your family. You may be scared, but you can get through this. I felt like the doctors were too slow and sent me for too many tests, but in hindsight I now realize then are the medical experts and I am trying to make sense of it all without any previous experience in this bc area. (I did go for a second opinion) I had my surgery 07/06/15, and am starting to feel better and embrace my situation. It's not easy, but I have to accept the fact that this is a marathon. I've never had any health problem that was so involved. This forum has helped me and I am grateful. I never even heard of mucinous carcinoma before the doctor told me I had it! These ladies are a great support system. You are in our prayers.
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Hi older mom. I go to Dr. Bonnie Guerrin at Overlook. She is wonderful. Had second opinion at Sloan Kettering in Basking Ridge. Good luck. Just keep moving forward. M
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Unbreakable & Mom409, wishing you better days ahead as your recover from your surgeries. Sending healing thoughts and blessings to you both.
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Hi Everyone. I guess I'm part of this exclusive club as well. Mammogram in May led to ultrasound and biopsy with showed ADH and led to lumpectomy on July 2nd. The surgeon gave me my results last Friday - she said mucinous cancer. Tumour board reviewed the pathology and said there were no clear margins so now I have to have ANOTHER lumpectomy next Friday with nodes and sentinel node dye injection.
I've been reading up as much as I can, but it is starting to get overwhelming. I just visited my family doctor and she gave me a copy of my pathology report, but I'm having difficulty interpreting it (of course.
) Does anyone have any insight into the following? Is this pure mucinous or not? Does it say what stage (I'm thinking 1a)?
Specimen A: Invasive mammary carcinoma with mucinous features, multifocal, histologic stage 2 Pathological stage: (m), pT1a, pNx
Tumour size 4mm (4x3mm) Overall Grade 2
DCIS papillary cribform solid grade I-II
LCIS present
Specimen B: ADH with microcalcifications
Any insight would be really appreciated.
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Capippy, I'm so sorry that you have to join us. How frustrating that you need to go back for more surgery. I think the link below will help you understand what they know so far. It looks like you have more than one tumor originating from one. I know when I got my pathology back I had to look things up one work at a time to understand what it said. Stage isn't really decided until you have your final surgery. Size, type, growth rate and node involvement isn't really known until then. What you have is from what has been removed until this point. I know how hard the waiting is. Feel free to ask more questions or just vent. I remember the frustration at only partial information. Just know that they are making sure they understand your situation so they can tailor the treatment to your situation. We're here for you.
http://www.breastcancer.org/symptoms/diagnosis/inv...
The follwowing link is a brochure from this website that helps you understand what type of diagnosis you have. I found it very useful in finding out what the doctors know at that inbetween stage and what they still have to find out. I filled out the bottom on each page for my diagnosis as I had information. It also helped me know what to ask my doctors. I know how overwhelming all the information can be, but this could easily serve as your guide until you know your full diagnosis. Feel free to PM me if you have questions.
http://www.breastcancer.org/Images/Pathology_Repor...
Jo
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Thank you so much, Jo. I'm off to read. I'm so confused. I wish I just knew what it was so I could feel a level of confidence that I'm doing the right things.
I guess we have to have faith in our professionals. 0 -
Faith in our professionals is good, but it always helps to have some basic information and follow up with what you don't understand. I tend to write the questions down so I get them all addressed. SInce you have more than one type, they will diagnose the most invasive and treat for that. They will also get an understanding if they are estrogen/progesterone sensitive and your HER status. They will get you a full diagnosis. This brochure should help you know what to ask. It is confusing. Just look at one thing at a time and stop before info overload. It takes a long time for all of us to understand what we have and how to handle it. You are doing the right things.
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Greetings CapIppy, I'm sorry you find yourself here, but this is an excellent supportive group of informed caring sisters. Gypsy Jo gave you some excellent advice, so there's not too much more to say, but I'll give it a try. Interpretation of pathology reports can be very complicated & confusing. You're asking all the right questions, so please feel assured that you are are on the right track. You will do well advocating for yourself. Some feedback on your pathology .....
- Unique mixed combo of subtypes (mammary = combined ductal & lobular), stage 1a (lowest invasive stage)
- Tiny 4mm mass, moderate grade 2, fortunately caught early. You can ask your pathologist for the breakdown scores on your grading (mitosis proliferation, for example).
- Precancer subtypes (ductal DCIS and lobular LCIS)
- Benign ADH
- Pnx = lymph nodes not yet evaluated. You may wish to address this with your doctors after your re-excision.
- Were the margins dirty with a precancer (LCIS or DCIS) or with the invasive mammary & mucin? Any indications on the extension and sizes?
- Mucinous features implies you probably(?) have conventional mixed invasive ductal and invasive lobular with mucin, but you need to ask your doctor. You can ask for the % mucin vs % cellular content. "Mixed vs Pure Mucinous" terminology is known to differ among pathology labs, depending upon their training and criteria. The ratio of mucin to conventional cells would determine whether your mucinous is likely considered pure or mixed according to WHO, but the lab would need 100% of the lesion to evaluate.
On final pathology involving mucinous, it is STRONGLY advised to get 2ND OPINION pathology readings by breast pathologists only. (I ended up using 4 pathology labs for a mixed bag of subtypes.) Vanderbilt, Johns Hopkins, MD Anderson and many NCI designated cancer centers have dedicated breast pathologists. You can ask your health insurance to preapprove 2nd opinions.
- LICS is known to be a diagnostic challenge, of which there are several variants of LCIS. You can ask the LCIS ladies on some of the threads on this website who would know more than I do. Ask doctor for grade and specifically mitosis score (growth rate) on LCIS also. Please review pathology closely with your docs to determine if your LCIS is pleomorphic, to identify patterns and if any comedo-necrosis is possibly observed. LCIS is often multi-centric and bilateral, so please investigate closely, including other surgical options. (A friend of mine had LCIS twice, so I've heard lots about it from her.) http://www.cancernetwork.com/oncology-journal/reco... There are many excellent LCIS threads on this website. My friend was glad she got 2nd opinions on her LCIS for surgical options also.
http://www.cancer.gov/types/breast/risk-reducing-s...
Best wishes and blessings for steady healing and good luck in your next surgery. Please keep us informed because we care.
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One more suggestion, CaPippy, you could also schedule a meeting with the pathologist directly, if your surgeon is not forthcoming with all the info you need. You could even request a 2nd opinion consult from another hospital's tumor board, and your health insurance would likely cover it, depending upon pre-approval.
Please never feel pressured to rush into any procedure or treatment before you're entirely comfortable getting answers to all your outstanding questions. You've got the time to take baby steps cautiously.
p.s. I just noticed your 1st thread now. Best wishes!
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Oh my goodness, thank you WeAreConnected - so much information. I have to absorb all this now. You've made me feel so much more comfortable and confident in approaching my surgeon and starting to figure this all out. So many hugs of appreciation.
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One thing I wish I had done sooner was to have a second opinion on my pathology slides. I did but after I'd made most of my treatment decisions. Look back on this thread for a post by "Red Sunshine". She is a pathologist who also has breast cancer (the post is probably around November 2011). She recommended that everyone with mucinous BC have a second opinion on their pathology slides at a research center. I had mine looked at the NCI research center in my state and learned that I didn't have the "pure" mucinous BC that I though I had. She also wrote a book by the same name as her user name "Red Sunshine". It was helpful to me to read her book too.
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Hi all, nice to have found this forum. Comforting but also sad to read about all your thoughts and stories.
Unbreakable, I find myself in a similar situation as you. Just turned 35 when I got my diagnosis in June. Mucinous cancer grade 2, fast growing. Did a single mastectomy with breast reconstruction the week before you and now at home healing. I had a lot of exudate after the operation, so I had to walk around with two hoses with bags, for about five days before they were removed. It does not hurt as much anymore, the swelling has decreased and the bruises are almost completely gone. Now using a silicone tape for the scars. Doing rehabilitation training as recommended and has an elastic band that the doctor gave me that I use over the upper part of the chest to reduce the risk that the implant will move upwards.
Unbreakable, it would be interesting to compare our results since they sounded similar, to see how doctors reason when it comes to the treatment. I´m now learning the meaning of my results and will within short meet the oncologist to discuss my treatment.
Next week I will start treatment to remove eggs, since I do not have any children yet. Have collected an entire bag of pills and hormone injections needed for that stimulation.
Good luck to everyone!
Greetings from Sweden
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First let me say to those of you who have joined this thread since I have that I'm so sorry you find yourself here and I send you wishes of healing and recovery. I am doing well. I had a nipple-sparing Mx on Aug. 5th with immediate gummy bear implant reconstruction. Having had radiation Tx on that same side seven years ago, it was uncertain if my skin quality would be good enough for a direct-to-implant job but all was well. Sometimes being small breasted can be a blessing. Nine days out from my surgery, I feel almost back to normal. I started exercising again three days ago and am walking about four miles a day. Looking forward to being able to run again. The drain came out two days ago. I do have some tightness, bruising, and unevenness in my newly constructed left breast but understand that will eventually diminish over time. The were no surprises in my final pathology. It was pure mucinous with a spot of DCIS. The only mystery left is whether they will recommend hormonal therapy. (I'm assuming they will.) I meet with the MO on 9/1. I look forward to continuing to follow this thread to find out how my sisters are doing and what the latest research on this rare type of BC is. Best wishes ladies!!
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Marathongirl - I'm so sorry that you had a second go-round with cancer, but glad you found us. There's lots of good information and resources here. Wishing you a continued smooth recovery!
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Hi everyone. I'm new to this board, I was told on July 21st that I have DCIS, My mamo showed microcalcifications, I had a biopsy that confirmed the diagnosis. I was then sent for a MRI and was told last Tuesday that there was two other suspicious spots, Was sent for another MRI guided biopsy. Today I was told I have IDC mucinous carcinoma Grade 1, thats all I know. Cant see doc until this coming tuesday. I'm so scared, I was told it is close to or in nipple so I'm not a good candidate for a lumpectomy. I dont know if I will need chemo or radiation. It seems hard to find info on this type. Any thoughts or advice would be appreciated.
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Lemint, First of all a big hug. I know it is all hard to digest. The hardest thing is the waiting. You will want to find out if it is pure or multifocal mucinous. The other thing to remember is that mucinous has a better long term prognosis than most. I don't know where you are going, but since mucinous is rare, you might want to get a second opinion from a NCI breast center that has more experience with rare types. You could have your pathology sent there. You will get through this and we are here to support you. As you go forward there are a few other threads here that might pertain as you move through the treatment process. Jo
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Thanks Jo, A big hug back to you. I hope you are feeling well after your treatments. I do find reading post's from this site comforting. Do you know how I would find out if it is pure mucinous?
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You won't necessarily know until the whole lump is removed. My biopsy was mucinous but mentioned that from the sample it couldn't tell if multi-focal or not. My grade was reduced once it was labeled pure. I did lots of web searches on mucinous. In general the prognosis is listed as very good. There are a few studies that say it may carry more risk than commonly thought. As voraciousreader pointed out to me, there are less studies done on mucinous breast cancer, probably because there aren't as many of us. My treatments and follow up are minimal so far. My biggest challenge has been side effect from anastrozole. I was told to consider by my MO; it was not in the recommend category. It seems like it is my choice how conservative or aggressive I want to be. I'm still doing some reading and am tracking my side effects while trying to address them. I am only committing month by month as to whether I will stay on anastrozole, try something else, or go back to feeling myself and living a healthier lifestyle. Whatever you do, look at all your options and ask questions.
The section on this website about treatment of mucinous cancer describes the difference between pure and multifocal. It gives the best overall view. I will keep my fingers crossed for you!
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Lemit, I have had both DCIS and Mucinous IDC though diagnosed seven years apart. The theory of my BS is that the mucinous was there all along and just suppressed by radiation and five years of tamoxifen. The joys of "extremely dense breast tissue which may obscure a lesion." I know it is all very scary but our diagnosis sound very similar. I am two weeks post mastectomy and feel back to normal other than some localized discomfort and adjustment to the implant. I won't be needing chemo and maybe could have avoided radiation and a second dx had I opted for a mastectomy seven years ago. My BS also said that there's no reason this should keep me from living into my 90s and dying of something else. I'm sorry you find yourself here. Please keep us posted on how you are doing
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Thanks Marithongirl, We do sound alike in our diagnosis. I hope you are feeling well and have a quick recovery. Not to be personal but how are your emotions? I still feel so depressed at times, I'll wake up from sleep sobbing. I'm trying to be a big girl (LOL) and be strong. I get overwhelmed that I have BC and sad to lose my breast. I know I have to just get it done. You all are an inspiration!!!
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Lemit, I am doing very well now that the surgery is behind me and I have my final pathology. In 2008 and this year, I certainly had my share of being scared, obsessing, and feeling angry or depressed. It helped me both times to know that I had, for lack of a better term, a "good" kind of breast cancer. I have friends who are going through or have been through much more advanced cancers (breast and otherwise.) Of course, it is still normal and OK to have the emotions you are having. You will get through this and there is lots of support for you on this board. Please keep us posted on how you are doing.
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Hi all. Well went to BS and now I was told I am triple postive. So confused, from what I have read Mucinous Carcinoma is almost always negitive. I was told I will need chemo, was not expecting that. I'm so upset. I'm getting a second opinion next friday. Any triple psoitive Mucnous out there?
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Lemint-I am triple positive too. We are a rarity, but there are a few others that have posted as triple positive with mucinous. I was diagnosed July of 2014, started Herceptin,, Perjeta, and Taxotere in August, added Carboplatin after my first cycle by my choice making my chemo regimen go from 4 cycles to 6 cycles, had surgery in December, radiation in February, and I just finished my last Herceptin. I too was Grade 1, but my tumor was large so I was staged as 2b. The HER2 drugs (Herceptin and Perjeta) are supposed to be more effective with chemo. Good luck with your upcoming treatment.
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Hi Chissie29. I hope you are dong well? If you dont mind me asking how did you handle the treatments and side effects? I've heard some bad stuff about Taxotene. Wonder if I have to have that.
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Lemint-Taxotere caused some neuropathy in my fingers so my doctor lowered the dose after the 4th cycle. I had GI issues, hair loss, nail issues, and the neuropathy, but I was still able to work for the most part full-time and still tend to my 3 boys. (I had chemo on Thursday afternoon so I felt well enough to work on Friday, then yucky on Saturday and Sunday, and I asked off for partial days on Monday and Tuesday). I knew I was HER positive before I had the mucinous diagnosis so I knew from the start there would be chemo. You will do fine if you have to get chemo-just take things one day at a time and before you know it, you will be done!
Chrissie
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Thank you for the support. My surgery was on July 29th at 7:30am. I had a unilateral mastectomy with breast reconstruction. When I was out of surgery and in recovery the nurse noticed swelling near my armpit. She contacted the PS and he said take her back, I had a hematoma. Thankfully everything is good, but that was scary.
I had two drains and both are out. I asked to keep one in an extra week longer. Who does that? Me. It was collecting 40cc's of fluid and was where my heamtoma was at. I didn't want to risk getting seroma. Since I knew the value in the drains I was ok with an extra week.
My first fill was 90cc's. I did not really have much pain, just tightness after surgery. I never took my pain pills at home. After my first fill, I cried! Surgery didn't hurt, that sucker hurt. I've had another 40cc's and that was not bad.
Tomorrow I meet with the oncologist. My BS said the tumor was 2.5cm and near the chest wall which was a concern. She said the oncologist may recommend radiation. That's a blow because the expectation beforehand was if I had a mastectomy the chance of needs rads was very low. The BS said she recommends me seeing her every 6 months.
I shall see how it goes tomorrow. In the end, if it's better to have rads and highers my chance of not having the cancer reoccur, then I'll do it.
Thankfully the recovery has gone well. I've had a lot of support from family, friends and my church. A few weeks ago my work just went from bad to worse. Half of my team is gone, and that was super stressful. My body felt nauseous, I lost weight because I have no idea what I'll return to. My support system at work is all gone, and I commute over an hour each way to work. It was a lot to think about on top of all this. I decided to trust God, and do my part, but not stress about it because it's not healthy.
I'm thankful for the brave men and women who have fought and continue to fight this battle.
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Hi Yumyum! I didn't have any bruising, and they haven't told me or given me anything for the scars. I was a runner and loved working out before surgery, so want to do what I can to ensure I have good use of my arm. My PS and BS keep telling me, don't do much with it until after 6 weeks. I find it interesting because some docs give you exercises, mine have given me none. They told me to not get my heart rate up since it impedes with recovery. After needing a 2nd emergency surgery, I'll do whatever it takes to have a good recovery. I did buy a Fitbit Charge HR so i can monitor my hr, and still workout, at least my lower body with squats, lunges, walking.
I'll let you know tomorrow what my oncologist says about treatment. My pathology report showed that the tumor was near the chest wall. My BS said my oncologist may recommend radiation. She said she'd recommend me monitor it with her every 6 months.
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Hi Lemint,
I'm so sorry to hear that you are triple positive and your BS recommends chemo. Good for you for getting a second opinion. Have you met with a medical oncologist yet and have they done a FISH test to determine Her 2 status? When they originally tested my mucinous tumor, it was equivocal meaning they could tell one way or another. They followed up with the FISH test which was negative. Please keep us posted on how you are doing.
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I can't shake off the tears today...
just read that 30% of early breast cancer will metastasize...
I honestly feel so confused about it all
am I going to get stage 4 cancer at some point?
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wobbly!!!!!!! Please! Please! Please!!!! LISTEN TO ME!!!!!!!! First off, we are approaching Breast Cancer Awareness month. Brace yourself!!!!!! You are going to be bombarded with misinformation regarding breast cancer!!!!!! So.....I want you and all of us here on the mucinous thread to hang tough!!! I want you and all of us here to get out the following message....FOR MOST OF US, BREAST CANCER IS A VERY TREATABLE DISEASE. Got it? Say it in front of your mirror, each day as well. FOR MOST OF US, BREAST CANCER IS A VERY TREATABLE DISEASE.
Number two......Statistics are meaningless to me because the collected data is usually not relevant. Most of the data collected is RETROSPECTIVE and rarely up to date when it comes to newer treatments! Say that in front of your mirror as well!
Number three....The number crunchers usually include us mucinous sisters in the sample population of traditional breast cancers....however, we DO NOT have traditional breast cancers. In fact, we are so original that, according to the NCCN , along with tubular cancer, we get our own treatment guidelines on our own page!
And finally, if you must go to a dark place in your mind, then come here! We will give you gentle hugs. 💑💑💑💑
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