Mucinous Carcinoma of the breast
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tricianne...great advice for those who need radiation. I also did lots of walking and water drinking and it kept the fatigue to a minimum. I experienced no burns...just a mild allergic reaction to one of the lotions. They switched it and then viola...no problems at all.
I'm trying to bump up this thread along with a new thread created by unsure123. She can't find us...so I'm going to try to keep these two threads close together so she might find them. I contacted the moderators, because every time I try to link this thread to another thread....when you click this thread on the other thread...it says it can't be found. The moderators need to fix this problem.
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unsure...please post here! Thanks!
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Thanks Voracious Reader & TriciaAnne for your info and encouragement. I am getting used to the idea and it does not seem as scary. I am meeting my doctors for the first time this afternoon and want to be armed with info, though of course the first thing to get clear on is the details of the surgery.
Prayers and well wishes in response to all of you too!
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Hi Ladies, I had posted a new thread on this rare disease in the hope of becoming better informed on treatment decisions and thankfully Voracious Reader put me onto this thread. There is so much information that like treegirl I've only just read the first and last two pages so I'm ready today to read more. I live in Australia and the time difference makes it difficult to be on at the same time at times. I am 45yrs and last year had a papilloma removed from my left breast. After 6 months I started to noticed a change in that breast, it had become lumpy and increasingly sore. I let it go for another 4 months because I thought that maybe it was scar tissue. Once I had it checked they did a core biopsy (not into the main area because it was so vascular and the radioligist thought that it would cause too much of a bleed) and the results of that showed ADH. My BS and his team believed that because of the rate of growth and the size that I should have a NSM with immediate recon. which I did on the 28/4/11 & that then showed that I had an 11cm DCIS & a 1.2cm invasive mucinous carcinoma (neither showed up on mammo or ultrasound). Sentinal biopsy was clear. I have been told by my BS & Onc that I do not need to have any treatment but that it would be up to me whether or not I decided to take tamoxifen. The statistics they gave me were that I would have a 4% chance of this coming back if I don't take anything and a 50% reduction, meaning 2% if I do take tamoxifen. I'm not sure if the benefits are worth the SE and risks associated with tamoxifen so I was hoping to speak to others in similar situations & get an idea of how you delt with this decision. I have asked for a MRI which I am having done next month to check the other side as well as hopefully see if there was anything missed due to the nipple remaining. Thanks for any advise and sorry that this is such a long post.
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Hi there Unsure123 I too am in Australia, South Australia to be exact.I do some connecting through Breast Cancer network Australia but there is very little there on Mucinous cancer so I far prefer this thread where I learn new stuff all the time. If you want to connect with me through my email I am at pahunt@adam.com.au then we might be in a similar time span and I may be able to give you support through this very trying time.
Voracious Reader I have never caught on to what bump means and I thought it was some americanism that I didn't know, now I am starting to comprehend what you are up to. Its great that we both breezed through radiotherapy. Blessings to you all
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Tricianne...What did you think? I had hiccups?
Just to let readers of this thread know...when you "bump" it means you are moving something up on a discussion board to catch people's attention. It's done on MANY discussion boards. So when you see the word "Bump" or "Bump" with a person's name...it means you are trying to get attention to that location.Unsure...First off, I'm glad to see that you are going to have an MRI. When you get to read this thread, you will see that there was a study presented in 2009 that said WE MUST HAVE MRI's because a fair number of women with mucinous breast cancer have multi-focal and/or multi centric disease. Furthermore, from your experience, as well as dozens of others, including mine, traditional screening DOES NOT find mucinous breast cancer. For the record, my mammogram missed my mucinous breast cancer, the ultrasound found it. The MRI confirmed it AND located a "drop" of DCIS, as well.
Once again, I urge you to read this entire thread, more than once. Most importantly, google the NCCN 2011 breast cancer treatment guidelines. I wrote to the moderators yesterday that the information found here on their website that concerns mucinous breast cancer is outdated. I also told them that what information they do have on rare breast cancers is difficult to find. I hope they will update the info. I asked them once before to do it. So, we shall see....
Unsure...did you have the OncotypeDX test? Again please read about it if you are not familiar. Most women who have the OncotypeDX test with "pure" mucinous breast cancer will fall into the "low risk" category and chemo will be of little or no benefit. With "low risk" the risk of distant recurrence will usually fall below 10% with Tamoxifen (or an AI). I was told to take the Tamoxifen to avoid a new primary breast cancer, because once you have had a breast cancer, you are at increased risk of another.
The biggest dilemma facing women with "pure" mucinous breast cancer is finding the balance of treatment. With "pure" mucinous breast cancer you have to be careful USUALLY not to OVER TREAT, rather than in most other women's cases of traditional breast cancer...you don't want to UNDER treat.
You don't mention what the specifics of your tumor are...regarding ER + or - etc. Nor have you confirmed to us whether you have "pure" or "mixed" mucinous breast cancer. I am assuming that you have "pure" because your doctors are being very conservative about treatment. Get your pathology report and go over it, if you haven't already and get the specifics.
I am happy to see that the doctor already gave you risk and benefits based on ABSOLUTE risk. That was excellent. However, I'd love to know where they got those figures from.
And finally, you should visit some of the other threads that discuss hormone therapy. Remember, you might find the information skewed towards folks who have side effects. Keep in mind, many women don't have side effects.
At 45, you are still very young. I was diagnosed at 53 and chose to be "aggressive" in my treatment with the understanding if I had side effects, I would reconsider each of my treatments. So far, so good.....
Good luck and thoughts and prayers to you.
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Hi Tricianne I'm in Sydney and yes I found this site back in March before my diagnosis and found it to be very informative and current with the information and everyone is so connected and reassuring, I'll try to send something thru when I get a chance on your email. Thanks again for your help voracious, I am ER+ 100% PR+ 80% and HER2- sentinal node clear. I had asked for the OncotypeDX test (something that I had found out about on this site) but we don't do it here in Aust. so to have it done it would need to be sent there in the states and it is quite costly which I was willing to do but both my BS & Onc said that I def. didn't need chemo so the test isn't necessary. My BS had been saying all along that this wasn't cancer so I delayed my NSM by 2 months because I was told that it wasn't urgent and even if there was cancer that the 2 months wouldn't make much of a difference. During the surgery I also had the dye put thru to locate the sentinal node but it wasn't easy to access so the BS decided to leave it because he was so sure that it wasn't going to be cancer & he felt that he would be making an unnecessary incision. Well he was so totally shocked when it was & then I had to have another procedure to do the biopsy. My BS has an excellent reputation and the Onc, who said he didn't need to have me as a patient and that" I no longer have cancer it's all been taken out" and that this is a very positive prognosis so I don't really need to have any further treatment (he also has a very good reputation at the Breast Cancer Institute) but the decision is totally up to me. I've been told that they would be extra cautious with me now because of this "little" surprise so I think that they would be even more conservative with their treatment for me now but they don't believe that I would benefit from taking tamoxifen but again they are leaving the final decision up to me which has been such a difficult one to make. The statistics were based on 100 women with my stage1 grade 2 prognosis I guess with any type of bc with the hormone + and HER2 - I'm not sure if this is just Aust women or where they get the no.s from but I will ask at my next app. Oh and I'm not sure about if it's pure or not as it isn't mention on my path report but I will ask. My GP had breast cancer 6yrs ago and she has been great to talk to, she was on tamoxifen but has said that I should trust the BS & Oncs judgements as they are very well regarded but that the decision is up to me. Sorry I'm rambling but it's getting late now (it's nearly 11:30pm) and I feel that all I do these days is read any info that I can get on this and still don't feel like I'm able to come to any conclusion. Thanks for listening and I'm hoping to read the NCCN 2011 tommorow when I get a chance so thanks again for all the info. Thoughts and prayers to everyone on this site... it's such a shame that there are so many of us here.
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Hi Voracious Reader I have been on the NCCN site but I am not sure if I understand how to use the info with my exact diagnosis to get an idea of what I should do. I will continue to read it but it is quite extensive and confusing to me at times. I am seeing my BS after I have the MRI so I will be asking more questions then. Also we are planning a holiday at the end of Sept for our 20th wedding anniversary to the Maldives and Singapore so I am really hoping to be able to avoid tamoxifen for at least until then so that I don't have to have the added worry of blood clots when we are flying, as it's such a long flight for us. Hoping that everyone is well at this time.
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Honestly, I would be asking the folks that make the OncotypeDX test the question AND also the pathology lab. And, if you're not happy with the answer...you can have your slides be sent someplace else to be looked at...Johns Hopkins and MD Anderson come to mind.
Please let us know how you make out. In the meantime...congratulations!
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I had several opinions regarding ovarian suppression. Two thought it was a good idea. One didn't think it was necessary. I chose to do Lupron injections along with Tamoxifen and have no side effects. I am also doing Zometa at six month intervals for three years based on the Austrian study....
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We can't get the Oncotype Dx test here in the UK either but my team seemed pretty sure that at grade 1 I wasn't needing chemo anyhow. And I wasn't inclined to go chasing after any extra treatment, although they did talk me into chest wall radiation for a deep wall margin issue, which I don't regret. I'm not doing tamoxifen, by my choice, so touch wood, end of story.
Oh, well apart from residual lymphoedema. 
Welcome to the newcomers, I do think this must be the largest gathered wisdom on mucinous breast cancer in the world! VoraciousReader, please could you repost the link for the NLN guidelines, thankyou.
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http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
Hymil...Above is the link for the professional NCCN 2011 treatment guidelines...You have to register to log in. Takes a few minutes and then you scroll down to the Breast Cancer treatment guidelines. They also have a patients edition, but I think this one is better. Make sure you read ALL the footnotes AND the end where they explain the level of endorsement of treatments....Very interesting.
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Thankyou 0
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Hymil...also note...if you look at the 2010 and 2009 and as far back as 2006....you will notice the changes in the guidelines for our type of bc. Seems like they have become more conservative in recent years....Let me know what you think.......
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I'm not too sure either but I think they may be catching up to the fact as evidence by this thread that their "facts" about us are up for debate, we are not all old postmenopausal with slow growing almost benign ER+ tumours as they previously thought, quite a lot here are younger ladies grade 2 or even 3 tumours and from not there six months ago to already too big for lumpectomy. Are we really changing from the mucinous BC population of forty years ago or does the information explosion now make it possible and more easy to debunk myths that were never true in the first place about the dispersed minorities like us? Without the internet I would have never met another sufferer, and my medical team would have only met about five others each year (despite that I live in a big city and attend the regional specialty cancer centre) none of them being working age if the stats are true, and I would have been told just as for standard BC and had to believe everything they told me... Who knows maybe they are reading about us here and learning... I think the development of genetic analysis of the stuff inside the tumour cells seems to be making a difference too which wasn't possible before. 0
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Hymil...what needs to be debunked is the idea that mucinous and tubular breast cancers are predominantly indolent and don't require the OncotypeDX test like our fellow ER+ breast cancer sisters with IDC and ILC do. I think the more information that can be garnered from genetic testing can only improve treatment making decisions for our group. I don't understand why the NCCN didn't include it in its latest recommendations. Then again, it truly hasn't been fully validated yet, so I guess that's why they are on the fence.
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How many of us, what size of a sample, would it take to validate it properly?
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Hymil...here are the date that the folks from OncotypeDX presented at the 2010 ASCO regarding samples and what the recurrence scores were. Please forgive me if the table doesn't show up in this response. If it doesn't I will piece together a table, so you can see the number of IDC's that were evaluated vs. mucinous...
Background: ER+ special histologic
breast cancer subtypes are reported to be prognostically significant. Here we
report the special histologic subtypes of ER+ breast carcinoma and associated
patterns of observed gene expression as measured by the 21 gene Oncotype DX assay.
Methods: All tumors from 6/1/04-3/31/10 were included in the analyses.
Central path used WHO criteria. Ductal NOS (DC), tubular (TC), cribriform (CC),
mucinous (MC) and papillary (PC) carcinomas were included. Quantitative
expression of 16 cancer related genes was measured on a scale from 0 to 15
(relative to reference genes) where a 1 unit increment is associated with
~2-fold change in expression. Recurrence Score (RS) was calculated as published
(Paik, NEJM 2004). Descriptive stats for the RS and individual genes [ER, PR,
invasion gene group (IGG) and proliferation gene group (PGG)] among the
different subtypes were obtained. Results: DC accounted for 94.6% of
127,364 cases, TC 0.9% , CC 0.3%, MC 3.3% and PC 0.9%. For all types a large
continuous range of RS was observed. DC had the highest RS. PC had the lowest
RS. The RS between PC, TC, and CC were not different. PC had the highest ER and
PR. TC had the lowest ER (may reflect bias in submission for RS testing). ER
was not different between CC and MC however PR was. The proportion with ER+/PR-
phenotype was different among the subtypes: TC (8.8%) and CC (8.4%) had the
lowest incidence whereas MC (14.0%) and PC (14.2%) were more similar to DC
(15.0%). TC had the lowest PGG expression. MC had lower IGG expression compared
to other subtypes. Conclusions: Special histologic subtypes are
characterized by differential gene expression and tend to have higher ER/ PR
and lower PGG/IGG expression but outlier cases are not infrequent w/in each of
the special subtypes in this large observational cohort. The variation in gene
expression, noted by histologic subtype, will be presented in detail.
Subtype n % of cases RS (median) ER (median) PR (median) ER+/PR- Proliferation (median) Invasion (median) Ductal 120,449 94.6 17.5 9.9 7.5 15.0% 5.4 7.1 Tubular 1,097 0.9 14.9 9.4 7.5 8.8% 4.4 6.6 Cribriform 441 0.3 13.4 10.2 8.1 8.4% 5.1 6.6 Mucinous 4,182 3.3 15.2 10.4 7.5 14.0% 5.2 6.4 Papillary 1,195 0.9 9.9 11.4 8.5 14.2% 5.8 6.5
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Okay...the table didn't print. Basically, it said that there were 120,449 IDC representing 94% of tumors tested between 2004 and 2010 with the median RS score of 17.5 For Mucinous there were only 4,182 which represented just 3.3% with a Recurrence Score of 15.2.
The conclusion for the various special histologies states:
Conclusions: Special histologic subtypes are
characterized by differential gene expression and tend to have higher ER/ PR
and lower PGG/IGG expression but outlier cases are not infrequent w/in each of
the special subtypes in this large observational cohort. The variation in gene
expression, noted by histologic subtype, will be presented in detail.So basically, what they are saying is because there are "outliers" and a small sample pool, these numbers cannot be validated as well at this time......
I posed the question to Lillie Shockney at Johns Hopkins and she concurred.
Keep in mind, they are STILL processing the data and then there is the TailorX trial which hopefully will add important information.
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Thanks for posting that, and giving the interpretation as well! 0
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Hi all my MC sisters & friends. You might be interested in this Australian research just completed by Macquarie University, Faculty of Human Science Psychological Distress, on Body Image and Self-Compassion. Breast Cancer Network Australia (BCNA) provided the anonymous study link to all of those of us who choose to respond.
Background
Women who have completed treatment for breast cancer face a number of changes to their bodies. Some consequences of treatment are immediate, such as partial or total loss of a breast, change in sensation and surgical scarring. Other side-effects may manifest gradually over the passage of time (eg. treatment induced menopause, weight fluctuation, and lymphedema). Such events can produce challenges to a woman's body image and affect her quality of life.
Recent research has indicated that self-compassion may be an important factor in psychological wellbeing in times of stress. Self-compassion can be understood as an internal process that can be cultivated, and produces effects on a person's view of themselves and also their subsequent behaviours. Self-compassion can be understood as comprising of three components:
The ability to be aware of the situation as it is, without exaggeration or avoidance. In other words, being with ‘truth' even when it hurts.
The ability to relate to oneself with kindness, rather than harshness or criticism during difficulty. In other words, the way we would be with a loved one who is suffering, but directing that dialogue towards ourselves.
The ability to put one's experiences in a broader context, knowing that stress and suffering at times are inevitable, and we have this in common with all humans. Such difficult experiences are seen as universal, rather than as individual failures.It is a different concept to self-esteem which is often based on success and external events.
An exploratory study was conducted to examine whether self-compassion, the ability to treat oneself with kindness while suffering, had an impact on coping with treatment related bodily changes.
How the research was conducted
The researchers wished to contact breast cancer survivors in the community who had completed active treatment (surgery, chemotherapy and / or radiation). A link to an anonymous online survey was sent to the Breast Cancer Network Australia and community groups via program coordinators and facilitators.
Demographics
279 women breast cancer survivors completed an anonymous online survey. Their ages ranged between 23-73 years, and the average age of participants was 53. Seventy seven percent (77%) of these women were born in Australia.
Roughly half of respondents were currently receiving hormone treatment. 37% had been diagnosed with breast cancer 5 or more years ago. Overall, 72% of participants felt that they were over their desired body weight and 66% admitted that this had caused worry.
Results
Survivors were asked questions about their experiences of cancer treatment, body image, self-compassion and psychological distress.
Importantly, it was found that self-compassion (an ability to treat oneself kindly during periods of suffering) lowered distress. In other words, during a time of emotional and physical challenge, such as the post-treatment period, a higher ability to show self-compassion was associated with increased psychological wellbeing.
How these results will be used
These results provide evidence that self-compassion is an important supportive approach for breast cancer survivors to adopt during and after treatment. Providing skills, training and resources to increase self-compassion appears to be a promising way of improving women's quality of life and longer term psychological well-being. Subsequent research will focus on developing a package to assist with self-compassion with a specific focus on coping with bodily changes.0 -
Hello brave women with MC:
I so appreciate all of your insights. I have had my meeting with breast cancer team and my surgery is set for the end of August. They are pretty confident it is pure mucinous and plan to do a lumpectomy then treat me with 6 weeks of radiation followed by hormone therapy for 5 years. I am post menopausal so not too worried about the hormones, just taking things one step at a time, surgery first, then worry about radiation, after that deal with hormone treatments. I am so grateful I don't have to do chemotherapy and you all have made radiotherapy sound pretty manageable. The bonus is I get a breast reduction as part of reconstruction (something I have wanted) though it will make recovery from surgery a little longer.
Are there any studies out there about diet as it relates to causing this cancer or preventing reoccurence?
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Tricianne... Thanks for posting the research. What jumped out at me was that a majority of the women surveyed said they felt they were above a desirable weight. I suppose women who are overweight have the added concern about losing weight following their diagnosis... Which added to their stress.
Treegirl....glad to hear that you have a treatment plan in place that you are comfortable with. I wish you well during active treatment. I promise once you finish, you will feel that it went quickly and you will one day soon, begin your new normal.
Regarding diet, there are numerous threads here that are interesting. The vitamin D threads are also interesting to read. I can't say that I know of any definitive diet that prevents recurrence. I have always maintained a healthy lifestyle and diet and voila.... Here I am! I recall when I was diagnosed the doctor gave me a To Do list. I looked at him after perusing the list and said I pretty much was already doing everything. He then took the list from me and tossed it in the garbage pail. I would hope that whatever I am doing will keep the beast from recurring. But honestly, I am more concerned about other things that affect my health.... Like driving on the Long Island expressway. So, at the end of the day, I do make sure I wear my seatbelt and with everything else... I just hope and pray for the best!0 -
Hi there again all my MC sisters. Continuing my prayers for all on here each time I log in, often I don't do a comment cos I am just amazed at some of the other wise replies.
Thanks as usual Voracious Reader, all the knowledgeable info I get from reading your posts are better than going to the specialist, he is good but I think you could teach him a thing or two. It is interesting the concept that we have about overwight, but then I am one of those in the research study and I put about 4 kg on with the Tamoxifen treatment and while I have slowed up and sometimes am actually on the decrease I would still have been one to comment that I was overweight.
Treegirl its good to hear that your treatment plan is all in place and while its very daunting looking ahead quite honestly, if, when I go for my next mammogram in November and if they were to find another small MC to deal with I feel that I could handle doing the treatment all over again. It is quite manageable. Diet wise there are so many links with so many ideas I get overwhelmed. I already had a very healthy diet, but am now looking at all the "plastics" info, washing "dirty" vegetables more and trying to make sensible changes but its all very mind befuddling. I am happiest with my Vit D deficiency diagnosis as I can take some postive steps to increase my Vit D. I may be kidding myself but right now it feels that is gives me some control, rightly or wrongly, over the cancer.Also I am working on keeping my"self-compassion" at a very healthy level. Lots of prayers and blessings Tricianne
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Hi ladies, I too didn't think that my diet was too bad etc but my guilt comes from thinking that maybe I drank too much alcohol so I didn't drink for about 2 months after my diagnosis and I had stopped for a couple of weeks before the precedure, and now I may have a glass of wine a week and even then I feel guilty and don't really enjoy it so I may not even continue that. I was drinking about 2 glasses of wine with dinner every night with no breaks so I'm hoping by stopping that I may make a difference but who knows??? I really wish there was more conclusive evidence on what we can do to reduce our chances of reacurrance. I know I feel nervous whenever I put makeup on that may contain parabens...
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Hi Unsure123, in the Aust time zone. Yes I can agree with you there are so many unsurities and if some researcher was totally definite about this or that which we must not do we would do it.But a close friend of mine died from malignant melanoma in her forties, so I have been neurotic about always wearing SPF 30 or higher and not going out without the "slip, slop and slap" that is drummed into us to beat skin cancer, I walk every day in the shade and now I have ended up with Vit D deficiency so maybe getting it right is not all that easy. However I obviously have not died from malignant melanoma in my forties.So maybe you win some but I don't want to lose any either.
TricianneAust Diagnosis: 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy,Tamoxifen,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy.It seems like I have a very healthy "self-compassion"!"0 -
Tricianne...Life's ironies....There's too many of them to count!
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So true Voracious reader. Well its time for bed. Nite nite
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So true Voracious reader. Well its time for bed. Nite nite
Oh dear I got this mesage now I am in trouble. "There were problems with this submission. Please correct the following information:
Posts may not be submitted in rapid succession."
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