Has anyone else on BCNA had Mucinous Breast Cancer, it is a rare breast cancer, some stats say 2-3% and I can't locate anyone on here who has this type of cancer. I was diagnosed in November 2010 and have completed all of my treatment but for another 4.5yrs of Tamoxifen. Look forward to hearing from you Blessings from Patricia

Hi helen, I have heaps of information on mucinous cancer. If you go online and type in Mucinous Cancer Breast Cancer Support USA you will get an excellent online resource with loads of info. This is the 1st bit of info I got before I found the specific MC site. Normal 0 Mucinous (Colloid) Carcinoma of the Breast By Pam Stephan, About.com Guide,Updated August 05, 2008 Overview of Mucinous Carcinoma of the Breast: Mucinous (colloid) carcinoma is a rare type of invasive breast cancer that is formed when cancer cells within your breast produce mucous. This mucous contains breast cancer cells that are easily distinguished from normal cells under a microscope. Together, the mucous and cancer cells form a jelly-like tumor. Most mucinous carcinomas of the breast are estrogen-receptor positive and HER2/neu negative. This type of breast cancer rarely spreads to your lymph nodes. Mucinous Carcinoma of the Breast is an Uncommon Diagnosis: Mucinous carcinoma of the breast is a rare type of invasive breast cancer, diagnosed in less than 3% of all women diagnosed with breast cancer. Also Known As: colloid carcinoma Signs and Symptoms of Mucinous Carcinoma: A gelatinous tumor of mucinous carcinoma of the breast will feel like a slightly bumpy water balloon, similar to harmless fluid-filled cysts. Smaller tumors may be too little to detect with your fingers, but larger tumors may press on surrounding breast tissue and cause it to feel tender. During your regular breast self-exam, if you feel an area that won't compress like the rest of your breast tissue, get it checked out by a health professional. Tests Used to Diagnose Mucinous Carcinoma: Mammogram – A mucinous carcinoma of the breast will often appear on a mammogram as a mass with distinct borders, having a bumpy shape. These can sometimes look like benign masses on a mammogram. Breast ultrasound – A little less than half of all mucinous carcinomas will be seen on a breast ultrasound, and the smaller tumors tend to hide within fatty tissue. Open surgical biopsy – A tissue sample is taken and tested for specific characteristics in the lab. Your Prognosis for Mucinous Carcinoma: Mucinous carcinoma of the breast usually appears in older women (ages 48 to 82) and is a medium- to- low-grade slow-growing type of breast cancer. Since it is not aggressive, your outlook, or prognosis if you are diagnosed with this type of breast cancer, is better than most other invasive breast cancers. A study done in western Australia found that, in most cases of mucinous carcinoma, the cancer did not spread to the lymph nodes nor metastasize to other parts of the body. Treatments for Mucinous Carcinoma: Mucinous carcinoma should be treated to get rid of the cancer and to prevent it from returning (recurrence). Treatments may include: Lumpectomy (surgery to remove the tumor and a margin of the surrounding tissue) Mastectomy (surgery to remove all of the breast tissue) Radiation Hormone Therapy (for hormone-sensitive cancers) I hope this is helpful. Do you know the grade and size of your cancer and if it is Progesterone, Oestrogen or HER (Growth Hormone receptive) I guess if you have had herceptin that it is HER +.Blessings & prayers from Patricia

Patricia Thank you so much for passing this on. My goodness, I didn't realise there was so much specific information about mucinous cancer available. I will certainly check out the website you mentioned. If I had known before about the good outcomes usually experienced by women with mucinous cancer, I probably would have felt less anxious about the future. But, as it happens, my cancer did spread to my sentinel node. There was only a tiny amount though, 11 cells. My cancers were Grade 2, 2cm and 1cm in size, hormone postive and HER+. I've been on this network for less than a month. I am not completely sure how the "contact" idea works. But if you would find it helpful to have me as a contact, I would like very much to keep in touch and share the experience of this uncommon cancer. All the best to you and take care, Helen.

Hi Helen I have sent you a request to be connected request. Its a complicated website to use so I hope I have done it right, then I think it provides the link. The online USA site has lots of the latest research into Mucinous Cancer if you like all the detail. One of the women Voraciousreader is her pen name, is extremely knowledgeable. Yes MC has a very favourable outcome lots of the research show that 95%of women who had MC are alive 20 years later so it does take some of the fear out of it. Have a great day and enjoy your one year marker of moving forward to good health now the treatment is partly out of the way. Blessings Patricia

I recently just diagnose with mucinous carcinoma(after done lump wide excision), hormone receptor positive and herr2 negative. with a low grade of tumour cells. also 3 sentinel node been dissected, show reactive features. now i am still live in fear as i newly diagnose with this cancer (1months). Im more worried on those treatment like chemo or radiation. I am young age with 33yr old only. you can contact me at my private mail over here as well. thanks, Chin

Hi Chin It is sad to welcome you to our group however MC is quite manageable. It is normal to feel fearful having just been diagnosed with breast cancer its the last thing we expect to hear that we have. MC of all the breast cancers is the preferable one to have it is least aggressive, so read all the research you can. Do go online to the Breast cancer Mucinous Cancer support group USA they have very knowledgeable people there. Normally with the lumpectomy and the low grade tumour that you have you would not receive chemo. It is more normal to have hormone treatment 1 Tamoxifen daily for 5 years and maybe 25 sessions of radiotherapy. I was a bit fearful of the radiotherapy but it was much easier to handle than I expected. I tried to focus on the fact that FEAR is often False Evidence Appearing Real and used two verses of scripture to help me through the whole of my treatment they are Matt 6:34"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. 2 Tim 1:7 For God has not given us the spirit of fear; but of power,(to deal with difficult situations) and of love(his love to meet our needs), and of a sound mind/self control ( to deal with myself/ my difficulties).I hope this is of some help to you. Do contact me on my private email meanwhile I commit to praying for you regulalry. Blessings Chin from Patricia (I use my full name)

Mucinous Cancer | BCNA Online Network

17 Replies

Leeloo
Member
11 years ago
i
Leeloo
Member
11 years ago
I had almost the same diagnosis at 32, 6 months ago, I am 33 now. HER2 neg, Estrogen Pos, Progesterone Pos. No sentinal node involvement. The main reason I am contacting you is because it is very rare to get this type of breast carcinoma under 35, actually only 1 percent of people who get this colloid/mutinous type. If you could Give me insight into your experiences I would really appreciate it. I truely hope you are doing well.
memyselfI
Member
11 years ago
Yes Perky you sure know the residential care stuff. Best, favourite, jacket gone missing the first few days never to be found again, ideal sized walking stick missing been replaced by an enormous one. Nevertheless I am very grateful Resi Care have taken over all the personal care as my stepmother resisted my assistance at every opportunity.

Anyway back to MC. I have a computer link with BCNA so if anyone posts a new message it goes to my email so that is easier to manage. Do refer to the american website that I gave you as its loaded with up to date information on MC. Also you can go to other sites in the website like drug reactions, dealing with chemo etc.

Yes you will appreciate your spare time when you get some back into your life meanwhile it appts & more appts. Blessings & prayers MemyselfI
perky
Member
11 years ago
Dear MemyselfI

Thankyou for note I wasnt sure if any of the previous ladies still looked at this site" fancy that"! and today must be Kismet. So had not headed the letter with any of your names.

As time goes on your lead in other directions as you have described and this health problem is intimate to you only. Pushed to the background for more important matters as time goes by. I've never been as popular as now I have cancer with all the appointments .Lived a very mild life of work ,kids, few outings of interest on weekends now I practiculary need a social secretary,instead I have a 3foot x 3 foot notice board that appointments go onto straight away in order of arrival in my bedroom.

Thanks for info on drug reaction, know about nursing homes and how busy they keep you with the settling in period and demands.Naming all her clothes, loose oversized clothes when she lacks movement in arms. Lost stockings, lost undies.shrunk best wool cardigans.Your in for a ride,Can only wish you the best of luck.Perky.
perky
Member
11 years ago
I also have this type of cancer.Had 45mm lump plus extras removed with a total weight of 140grams, thats 2 large eggs.in weight and one in size. Then second op 3 weeks later of axillary clearence this all happened October 2014.My birthday month.That has left my right breast very perky.I am to start the standard treatments soon as surgery healed .I will have Chemo, Radiation.Hormone therapy.I was going through Menopause when I found the lump.At first I thought it an Old calcified lump from 10 yrs ago.

But could notice the growth over next 2 months and went to see GP.So just getting ready to start with hair cut in 2 weeks a couple of days before first Chemo.Can i say that the Node removal operation is more painful than the lumpectomy,which I was back to work 2 weeks later. At present I still have drain in 6 days post -op and very sore scapula muscle,just for others to note as I thought this operation was easier on the body and not so ready,the first operation seemed a breeze.I thank the other ladies for the input above that I have been able to read especially the length of time since you started treatment and the straight facts even if the complaint has returned, all good information.Some of my friends had breast cancer 10 yrs ago and they feel treatments have changed so much they can be of little help to the situations of today.
memyselfI
Member
12 years ago
Hi DorothyFay,

I have a friend whose MC was more than initially diagnosed but it hasn't caused her much of a problem. It is true that each time you get a bit more information the anxiety swells up again, like how does this new info affect me, but it will settle again as you know more. Dr's do seem these days to have to prepare you for the worst which can get a bit scary at times, but take one day at a time and a great idea to keep busy.

Lots of prayers from Patricia
DorothyFay
Member
12 years ago
Hi, yesterday I met my surgeon. She seems very nice and very knowledgeable. She is HeD of the Breast Cancer Unit at Penrith Public Hospital. I will be having a Lumpectomy and Sentinal Node Biopsy next Wednesday. I have to have a hook wire inserted under ultrasound prior to surgery. Dr has told me it is day only surgery and I won't have a drainage bag. This sounds hopeful. She also said that Invasive Mucinous Carcinoma can be 'mysterious' and that in can spread out and be bigger than it appears on ultrasound. Have you this before? I thought I would feel more settled after seeing the Dr but now I'm anxious all over again about the results to come in from surgery pathology. I wish you all the best and have a good weekend. I'll be keeping busy. Bye for now
Onesim
Member
12 years ago
Hi DorothyFay,

Sorry to hear of your diagnosis, but as my surgeon and oncologist have said, if you get diagnosed with BC, this type is the one you want!

I had my lumpectomy (I think the lump was around 2.5cm) and sentinel node biopsy at the very end of July. As the cancer hadn't spread, I didnt require chemo and I am currently undergoing radiotherapy at Peter Mac. Have just come home from my 20th zap and so far my skin is holding up pretty well - just getting a bit itchy but have been given some hydrocortisone to relieve that. I have 5 more zaps to go, then 5 "boosts", whereby they concentrate on the area where the lump was instead of the entire breast area.

Fatigue comes and goes in waves - some days I'm absolutley fine and others I just want to spend the day curled up on the sofa and snooze. The nurses at Peter Mac say to just do whatever your body tells you, so I do!! This journey is all about you, so make sure you put yourself first instead of others. I am self employed and work from home, so I'm able to do my work (bookkeeping) after I've napped and I'm more refreshed.

I will be starting on 5 years of Tamoxifen once radiotherapy has finished, so it'll be interesting to see what happens from then on. I'll try to remember to post any side effects.

I wish you well on your journey. My thoughts are with you and I'm sure you will be fine.

Simone xx
memyselfI
Member
12 years ago
Hi DorothyFay, Yes it starts off being a scary journey, its just 3 yrs since I started my time of dealing with mucinous cancer. Apart from taking Tamoxifen daily thats about all the impact left of my life plus a yearly mammogram

My diagnosis & treatment is as follows 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy, Tamoxifen for 5 yrs ,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy.Nov 2012 Mammogram all fine. 2013 Mammogram due.

Reading the variety of blogs on this site gives you a wide range of information which is very helpful. Prayers and blessings Patricia aka memyselfi.
DorothyFay
Member
12 years ago
Hello, I'm 63 years old and have had duct ectitis for 4 years. Because of this I have been have a yearly mammogram and ultrasound. Last week diagnosed as having a 9mm invasive mucinous carcinoma. Thank you to all who have shared their thoughts and fears. I start my journey this coming week and I feel more positive because of all the information available. You can't win Lotto but knowing this type of breast cancer is less aggressive and maybe no chemo feels like a win. Thanks again and I'll post what happens when I see the Dr.