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Mucinous Carcinoma of the breast

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  • Jude58
    Jude58 Member Posts: 3
    edited March 2011
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    Hello everyone,

    My sister was diagnosed with Mucinous Carninoma of the right breast two weeks ago. I can't find a lot of info on this type of breast cancer. Can anyone help? She was told they caught it early and it was microscopic. She had a biopsy done resulting in this diagnosis. She is so scared and so am I. She meets with her surgeon tomorrow. I so want to help her but have no idea how. Can anyone help her please?

    Thank you so much!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    Jude58... May I suggest that some one go with your sister to the surgeon. Bring a tape recorder. Afterwards, you can request a second opinion. My surgery was very straight forward and the surgeon was highly recommended so I didn't have a second surgical opinion. Following the surgery she will receive a final surgical pathology report. Her treatment plan will be based on the report. If her tumor is er+ then she will be eligible for the Oncotype DX test. That test looks at the genetic make up of her tumor and gives information about risk of distant recurrence and potential benefit of chemo. Many mucinous breast rumors are not treated with chemo, however in rare cases they are... So the oncotype dx test is a good tool. Be sure that your sister requests the test if the surgeon forgets to bring it up.



    In the meantime, read this thread. And when you finish, read it again. When I was diagnosed, I read it several times. And finally, calm down. This is the toughest time. When you are diagnosed. But once you have a treatment plan and once treatment ends, hopefully she will be able to enjoy a long life.



    Good luck. Your sister is very lucky to have you for a sister.

  • Jude58
    Jude58 Member Posts: 3
    edited March 2011
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    Thank you so much for answering. Her husb is going with her tomorrow and he's trying to be her 'rock' but he's having some trouble. Understandable. I wanted to go with her but was not able to. It was hard enough to get the time off work for whenever her surgery will be. I'll pass on this info to her this evening so she'll request the Oncotype DX test. Thank you for recommending that.

    I tried to get her to sign up here herself but I think she's still so shocked by the diagnosis she's kind of frozen and not able to take a lot of action in this direction yet.

    Can you share with me her best scenario? Is it better to have the tumor come out as er- rather than er+?

    Thank you again!!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    The best case would be a grade 1 or grade 2 er+,her neu negative, pure mucinous tumor. If she gets the oncotype dx test, hopefully it will be a score of 18 or less which would be considered low risk of recurrence. Since the oncotype dx test began, several years ago, the average score for mucinous breast cancer is 16. Even if her tumor characteristics are different, remember there are many different types of targeted treatments with excellent results.



    Definitely encourage her to join bco. Don't forget, you can click my name and send unlimited private messages. You just maxed out your quota for 24 hours on the general board. Wish your sister my prayers and good thoughts for tomorrow.

  • tricianneAust
    tricianneAust Member Posts: 153
    edited March 2011
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    To Jude58. While like your sister I was quite shocked by the diagnosis of Mucinous cancer, but as you can see from my diagnosis box I have had a much easier experience than I anticipated. That is my prayer for her and all of your family. Mine was microscopic just under 2cm, stage 1, grade 1. The lumpectomy was a breeze compared to what I anticipated, my 3 lymph nodes were immediately above the cancer which was in the top quadrant of my left breast. It healed very quickly with a small scar. The tamoxifen made me quite tired & weepy at the beginning but I soon readjusted. Now the radiotherapy is in action and again its all been fine. So with prayer & good professional assistance, & support from my great family its all being dealt with and I am at the very relieved stage with an anticipated outcome of no further problems if it all keep progressing this way. Its 6 months since diagnosis and life is just about back to normal with good energy levels & overall good health.

  • tricianneAust
    tricianneAust Member Posts: 153
    edited March 2011
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    Thanks voraciousreader for all the info on Vitamin D & breast cancer I have read some of the info on site but it sure takes a while. I do appreciate your research skills.Blessings tricianne

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited April 2011
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    edited out.

  • tricianneAust
    tricianneAust Member Posts: 153
    edited March 2011
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    Thanks Eve, that's a great idea getting tested annually & getting it into normal range naturally. Sorry to hear that you have had a second dx. How is it going for you now? Blessings Patricia PS I have to get an exact copy of my Vit D levels as I don't understand the number, 41either.Normally the GP will print it off but I had to dash off.

  • northernstar
    northernstar Member Posts: 3
    edited March 2011
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    Hi everyone. This is my first post! I was diagnosed with mucinous carcinoma just before xmas and had a lumpectomy in jan, followed by 20xradio (15 to whole breast, 5 to area lump removed from). Like most of you, I don't fit the usual MC profile (aged 40 and pre-menopause) and am finding myself staring down 5 years of tamoxifen with a sense of dread (I've read all about the side effects - yikes). Reading this thread has given me much to think about - I shall have many questions to ask my onco when I see him (I haven't even seen my path report and I'd never heard of an Oncotype DX test - not sure we have that in the UK!!!). I'm thinking I might refuse the tamoxifen and would really appreciate any feedback from you Wonderful, Wise Women.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    northernstar- I'm sorry to hear about your diagnosis. Glad you found this thread on this website.  When you meet with your medical oncologist find out if it is "mixed" mucinous or "pure" mucinous.  Another woman from across the pond took a very long time to nail this point down.  When she ultimately was given an answer, she was told that unless it is "mixed" mucinous breast cancer, the pathology report will only say "mucinous" which refers to "pure."  I'm not sure if your pathology department classifies them that way, but find that information.   From your signature, it appears that your tumor carries "favorable" characteristics.

    Regarding taking Tamoxifen, that is a VERY HOT question and I have to say there is no right or wrong answer.  Google the NCCN 2011 Breast Cancer treatment guidelines and read what they say regarding the treatment guidelines that mostly resemble your tumor.  Then use that as a springboard to begin a discussion with your oncologist.

    England does not have the Oncotype DX test, to my knowledge, as of yet.  You can certainly inquire about it.  Interestingly, for the first time the NCCN guidelines are incorporating the Oncotype DX test in their treatment guidelines.  HOWEVER, it was NOT included for mucinous and tubular breast cancers, which I think is puzzling.  There are a few women here who have found, once they had the Oncotype DX test, to have less favorable Oncotype DX scores then what was originally thought and ultimately led to more aggressive care. 

    Once you speak to your medical oncologist, I hope you will come back and let us know what you decide to do and of course, let us know how you feel.  I just want to also say, that regarding the treatment plan, there is nothing written in stone.  You can always revisit your treatment plan.  The important thing is to find an oncologist whom you like and trust.  By all means, if you disagree with your oncologist, get a second opinion. And if both opinions disagree, then get a third!

    My thoughts and prayers are with you and all of my sisters.

  • northernstar
    northernstar Member Posts: 3
    edited March 2011
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    voraciousreader - thank you SO much! I really appreciate your advice and that you have spent so much time researching MC. I probably won't get an appointment with my onco for about 6 weeks so I shall have plenty of time to arm myself with as much knowledge as possible. I'm seeing my family doctor this evening so I'll see if she has been sent a copy of my path report. I have started taking the tamoxifen, but only 1/4 of the dose and am already noticing some effects (I woke during the night feeling hot and with my heart racing and pictures flashing in front of my eyes - but could just be the stress of it all, I guess). Any how, I'll let you all know what I ultimately decide.

    Thanks again - you're brilliant!Smile

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    Northernstar...Thanks for the kind words. 

    I'm wondering, how easy or hard was it for you to find this website and thread?

    I'm beginning to suspect that the more we post regarding this rare breast cancer, the easier it is for a search engine to direct people to this site.

  • bellydancer
    bellydancer Member Posts: 24
    edited March 2011
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    Hi,



    In response to how easy it might be to find this thread, I have a Google Alert set up for "mucinous breast cancer". Daily I receive an email containing links to where that phrase appears in the Internet.

    Frequently I could be directed to this forum. Also within the first 2 pages of a general Google search a link to threads in BC org can be found. It makes me think: type it and they will come :).

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    Bellydancer... I figured that the more we post... The higher up on the food chain on the www we'd be and easier to find. I do a search most days on pubmed. Hope you're doing well.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited March 2011
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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    Yep!  The study you post is interesting.  It underscores several points about pure mucinous breast cancer.  The first point is that the majority of pure mucinous breast cancers are either Grade 1 or 2.  However, there were some Grade 3's.  The second point mentioned in the study of importance is that of the 28 tumors, they presented between 2 weeks and 10 years.  So, that suggests that it can be VERY slow growing, or FAST growing.

    I think the takeaway message is that once the tumor is identified, it needs to come out and it's characteristics pathologically examined to determine where one's tumor falls on the spectrum. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited April 2011
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    My final pathology report came Thursday morning. The tumor is pure mucinious. Diagnosis: 1/7/2011, IDC, Stage I, Grade 1, ER+/PR+

  • bellydancer
    bellydancer Member Posts: 24
    edited March 2011
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    Thanks VR, I am doing well.  I am 2 months into the Tami...no obvious side effects (1775 to go).

    Eve, I follow a couple of the "alternative" threads.  I read you are leaving the boards wish you well on journey. 

    Everyone else, I wonder how many of us follow this thread?  Might a bit of a role call, Intro be in order?  I noticed the orginator of this thread has not been back for a number of months.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited April 2011
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    VR is the glue to this thread. She is the voice, the heart and the source of information for this rare cancer. I trust as others dx with mucinious bc will come and find encouragement and support here as I have.

  • tricianneAust
    tricianneAust Member Posts: 153
    edited March 2011
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    Hi all my fellow Mucinous Cancer sisters. Thinking of you all & praying for you as I sit in the radiotherapy unit waiting for my daily appointment. 4 weeks done and no problems with the radiation. I make sure I use lashings of cream several times a day, drink plenty of water and have a brisk walk after treatment  each day and so far its all good, Thanks for all the helpful advice. Blessings from Tricianne.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2011
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    Tricianne - Glad to hear that your therapy is going well! 

    Thanks for the kind words!  We are all in this together! 

    Bellydancer -  I think most women with Mucinous Breast Cancer, particularly the ones with "favorable" characteristics, move on to the next chapter of their lives and thankfully, don't have to go back.  That's why I think keeping this thread "open" is so important.  It gives the new "tourists" a road map...AND it should give the researchers an idea of who ALL of us are...with all of our various presentations.

  • bellydancer
    bellydancer Member Posts: 24
    edited March 2011
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    Great to hear the radiation went well for you, Tricianne!



    Be Well,



    Debra

  • tricianneAust
    tricianneAust Member Posts: 153
    edited March 2011
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    Thanks Voracious Reader and Debra for your kind comments, its very nice when people bother about you like that. You are all a great support. Blessings & continuing prayers Patricia

  • tricianneAust
    tricianneAust Member Posts: 153
    edited April 2011
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    Radiation was heaps better than I anticipated. All finished now. No skin or fatigue problems, am feeling great. Continued prayers and blessings Patricia

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2011
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    TricianneAust...

    I was thinking of you this week....

    Glad you did well!  Thanks so much for posting and telling everyone about your experience.  I didn't have any side effects either from the radiation treatment.  I kept to a schedule of drinking lots of fluids and walking.  I think on these threads, sadly, we get used to reading more about the negatives of treatment.  It's nice to hear, from time to time, that treatments DO sometimes go well!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited April 2011
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    Thanks Voraciousreader. Thankyou for your encouraging comments. It does sound a bit like boasting when you breeze through radiation treatment but I am rejoicing in my good fortune.I would pray for the same outcome for everyone I know going through radiotherapy.

    My radiation oncologist does firmly believe that if you walk for at least 30 mins after your treatment it gives the body a chance to re balance itself after the radiation "onslaught" as he calls it. Drinking plenty of water does a good job of rehydrating you and using heaps of cream protects the skin. My friend who had 6 1/2 wks of radiation treatment just 2 months prior to me gave me heaps of good advice and she breezed through it too. I certainly would't be fearful if ever it was essential for me to need radiotherapy in the future. I also scheduled the daily treatment into my life as an essential (on my friend's advice) so that I didn't resent the daily trips to the hospital but appreciated the medical facilities that were so available to me. What a blessing to have such treatment and support available. Blessings TricianneAust

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2011
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    TricianneAust...Blessings to you and lots of good luck in the future.  It's so nice to share good news and hopefully that's all there will be in our futures.  There's nothing wrong with sharing good news and if our good news and OUR strength gives strength to other sisters, well, then I only hope there's lots of it to go around.  Because, there are a lot of sisters who need it!  Stay well and happy!

  • Cliona
    Cliona Member Posts: 3
    edited April 2011
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    Hi, I'm new to this forum, just joined. My Mom who is 81 was diagnosed with Mucinous brest cancer last friday. The surgeon seemed very positive and recommended removing it and the sentinel lymph node also. He decided it worth removing because she is a very fit 81, simiar to a woman in mid 60's he said. He also said she'd need a few weeks of radiotherapy afterwards but not chemo.

    So that all seemed fine, she had blood tests before we left also. Today she got a call saying they want her in tomorrow for a CT scan. That worries me as anything I've read so far (just found out a few hours ago about CT scan) says it's to see if it has spread. Has anyone else had to have CT scan before surgery? They said surgery will be in about two weeks. Thanks for any help.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2011
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     Cliona...Sorry to hear about your mother's diagnosis.  Below is a description from the BC.org website about when a CAT scan is used.  If you're unsure why the doctor is requesting it...Why not call back and ask?  Mucinous breast cancers are difficult to "see" on mammograms and are often detected on sonograms.  Perhaps the doctor wants to "see" it better on a CAT scan so he can determine if a lumpectomy is appropriate.  Perhaps he doesn't want any surprises on surgery day.  You don't mention how big it was.  Nor do you say what characteristics it has, such as ER/PR+ and the Grade.  Good luck to you and your mom.

    A CT scan (also called a CAT scan, or computerized tomography scan) is an x-ray technique that gives doctors information about the body's internal organs in 2-dimensional slices, or cross-sections. During a CT scan, you lie on a moving table and pass through a doughnut-shaped machine that takes x-rays of the body from many different angles. A computer puts these x-rays together to created detailed pictures of the inside of the body. Before the test, you need to have a contrast solution (dye) injected into your arm through an intravenous line. Because the dye can affect the kidneys, your doctor may perform kidney function tests before giving you the contrast solution.

    Right now, CT scans are not used routinely to evaluate the breast. If you have a large breast cancer, your doctor may order a CT scan to assess whether or not the cancer has moved into the chest wall. This helps determine whether or not the cancer can be removed with mastectomy.

    Your doctor might order CT scans to examine other parts of the body where breast cancer can spread, such as the lymph nodes, lungs, liver, brain, and/or spine. Generally, CT scans wouldn't be needed if you have an early-stage breast cancer. If your symptoms or other findings suggest that the cancer could be more advanced, however, you may need to have CT scans of the head, chest, and/or abdomen. If advanced breast cancer is found, your doctor may order more CT scans during treatment to see whether or not the cancer is responding. After treatment, CT scans may be used if there is reason to think the breast cancer has spread or recurred outside the breast.

    Some researchers are investigating whether breast CT scans could be a better screening tool than traditional mammography. During breast CT, you lie face down on a table while a CT scanner rotates around the breast. The total dose of radiation is the same as in a conventional mammogram. Research on breast CT for screening is still in the early stages, however.

     



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  • Cliona
    Cliona Member Posts: 3
    edited April 2011
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    Thanks for your quick reply VR. I did call to ask but got the answer machine, left a message so hopefully they'll call in the morning before we head off. The surgeon said it was a small tumour, at the time (before reading here) I had no idea I should ask the exact size, but I will.

    She had a mammogram, ultra sound and biiopsy and it was the results from those that we discussed with the surgeon. While I wouldn't want to keep her in the dark at all, I didn't want to ask too many questions at the time as she was already shocked to learn it was cancer and needed time to let it sink in. She's a very positive woman so hopefully that will help her. Once again thanks for your reply. I'm bringing her tomorrow for the scan so I can ask more questions then.