Does anyone else have a diagnosis of mucinous or colloid breast carcinoma? If so, what can you tell me about it?
Jolamine is really struggling to get decent information about this cancer - can some of our regular members keep bumping this post please so that it's easily found - just incase someone does join Cancer chat who has knowledge that can help her.
Thanks, Diz x
Hey its me debbie, I talked with you about 3 weeks ago. You were going to the dr. on a fri. because you found another lump on your oyher breast. How did that come out?
Thank you for bumping this up.
I would really appreciate any help at all that anyone can give me on this type of cancer. In the four months I have been searching, I have not come across one other person with this type of cancer, yet it is supposed to make up about 2% of breast cancers.
As you know, I am desperate to make treatment decisions, but cannot do so without the facts.
How are things going for you - I presume that all the radiotherapy is behind you and trust that things are now more comfortable and are moving forward? - Have you been left with any legacies from your treatment and have you started taking your tablets yet?
I had my ultrasound at the beginning of September, which I was told is clear. As over 50% of primaries and 25% of secondaries appear to remain undetected by mammogram and ultrasound with this subtype, I have told my surgeon that I am not reassured by this and need an MRI, but I have been informed that it is not NHS protocol to use MRIs for breast cancer unless the cancer is Grade 3 or above or in exceptional circumstances. I am currently arguing that a cancer which fails to be detected in such a large proportion of cases and is of such a rare sub-type, is an exceptional case.
So far, my request has been refused on three occasions, but I have been informed by my surgeon that he would discuss my case with the radiologist again and get back to me. That was over a week ago and I still await the outcome of this discussion.
I have since seen the clinical oncologist and have written about this in my `Treatment Options and Family Pressures' post on this site. This was a long and complicated story, so rather than re-write it here, you can read it there.
I am feeling very frustrated and let down by my `care-team'.
Hi, yes the radiation is all done as of last wed. I got burnt bad so they let me go at 25 treatments instead of 30. I see the dr. next month and at that time he will give me that pill to take for 5 yrs. So far I have no other problems. Now how about you? Let me know were your at. I am still here to talk to. In my thoughts Debbie
I am glad to hear that the radiation is all done and hope that the burns are healing. I am no further forward. As I said in my other thread, I had an ultrasound, which has failed to show anything up in the other breast, but I am still having the same symptoms that I had with the original tumour and am not reassured by this result, when ultrasound fails to pick up over half of mucinous primaries and 25% of secondaries.
MRI is apparently more effective in picking up smaller tumours in mucinous cancer, but my care team is refusing to give me a MRI. I was told that this was only used from grade 3 tumours up, or, in exceptional circumstances, with breast cancers. I replied that something as rare as this is an exceptional circumstance, by virtue of its rarity. These protocols seem to fly in the face of all advice to catch cancer at the earliest stage possible.
My original tumour was not picked up on mammogram until it was big enough for me to discover it myself upon self-examination, so I feel justified in holding out for the appropriate diagnostic tests. There was to be another discussion with the radiologist last week and I am still waiting to hear the outcome of this. If this is refused, I don't know what more I can do.
There has been no move for pathology to test whether my cancer is of a 'pure' or 'mixed' sub-type and no tests have been done to determine whether it is sensitive to chaemotherapy - although I have been informed that chaemo will not work.
I feel that I have exhausted all routes to get the diagnostic tests appropriate to detect this type of cancer and see no point in making treatment choices for one breast when the problems with the other are being ignored.
Further to my disastrous appointment with the oncologist, I have since asked to be referred to see another oncologist, who I hope will actually show me the algorithms and help me to weigh up the benefits against the side-effects and complications and come up with a medically sound decision.
I cancelled the appointment with the psychiatrist, which was made for me against my wishes and, I also cancelled my first fast-track radiotherapy appointment, which was scheduled for last Monday, and again, made for me against my wishes - I will not be brow beaten into fast-track treatment, which may do me more harm than good,
I do concur that if the research I have come across carries any weight then this paints a very different picture of mucinous cancer than previously thought and, I may eventually need to have radiotherapy, but it will be my decision, based on weighing up the odds and making an informed choice.
I am concerned that I mentioned the problems with my other breast at my first hospital appointment. That was over four months ago, yet I am no further forward now than I was then. I again mentioned this four weeks after my surgery when it was dismissed as `maybe coincidental', with not as much as an examination. When I again mentioned this seven weeks after surgery I was given an ultrasound - I know my own body and know that things are not right.
I feel that I have spent the past four months, almost continually trying to find out about this type of cancer, yet I have only managed to discover a handful of facts, some of which totally contradict any information which I was given upon diagnosis.
I am now well out with treatment parameters, but have yet to see a professional who will discuss my treatment logically. When I do eventually get my second opinion, there will still be a considerable delay before treatment can begin.
I have received a further appointment for this coming week to see the oncologist that I have already refused to see again and, have an appointment to see a respiratory specialist in October ( to investigate pain across entire chest bone and arms, which are still sore post-op and, to check out my breathing which has become labored since my surgery).
With any luck I might get word about my appointment for a second opinion next week.
I am tired of all this, extremely frustrated at not being able to find any worthwhile information about this type of cancer and feel as if I am expendable as far as the NHS is concerned - not a nice feeling when faced with this disease, as any advantage in having early stage mucinous carcinoma is lost as the disease progresses and the prognosis becomes the same as any unspecified form of invasive ductal carcinoma.
In response to your comments about mucinous cancer on your own thread, I too find it difficult to believe that there is nobody on Cancer Chat who doesn't have this form of cancer. Debbie is the only person who has said that she has the same cancer, but she is based in the USA, where they test for pure or mixed subtypes and offer Oncotype tests.
It is reputed to affect about 2% of all people with breast cancer, but all of those in the UK appear to have gone to ground.
I have found that because this type of cancer is supposed to have a more favourable outcome than some other forms, it tends to be largely ignored by the medical profession, which only naturally hones in on the more aggressive strains and those where larger numbers are affected.
Recent research however points to obscure multifocal lesions which are not picked up on mammogram or ultrasound. This paints a very different picture of the disease.
No matter how indolent the disease is, it is still cancer and, if not caught in the early stages, any advantage in having a less aggressive form of the disease is lost and the outcome is the same as for the more aggressive forms.
Sadly, there is a paucity of information on this subtype and because the numbers affected are so low, researchers cannot produce papers with significant numbers in this cohort to get anyone to heed their findings or to appreciate the more sinister change of direction with this subtype than was previously thought. I wonder how others have felt given the diagnosis of a rare form of cancer and how easy they have found it to get information.
I would be very grateful to anyone reading this who can bump this post up to keep it active during your absence from the forum, as I feel that people with rare cancers get a raw deal and have a lot of additional pressure heaped upon them as a result of a lack of information. People who have just been hit with a diagnosis of cancer do not need the additional worry that this brings, particularly when it could so easily be avoided.
Would it not be possible to have a dedicated rare cancer nurse who could be contacted in such circumstances? If they couldn't answer questions immediately, they have access to far more information than Joe Public and could access this on the patient's behalf.
Without access to the most appropriate forms of diagnostic testing and having the right tests done in pathology, the occult pattern of mucinous carcinoma will continue to be ignored and any advantage in having a less aggressive form of cancer is lost.
How do we overcome these hurdles?
I was diagnosed last February with Pure Mucinous breast cancer. I live in the states. If you go to breastcancer.org and do a search for mucinous or colloid carcinoma, you will find discussions about it.
The study that you refer to regarding multi-focal mucinous breast cancer was done by George Perkins, MD at MD Anderson. Perhaps you should show the study to your oncologist.
My breast cancer DID NOT show up on the mammogram. At my routine ob/gyn visit, two months BEFORE my annual screening, my doctor felt the lump. An ultrasound found it. I subsequently had an MRI that found an additional DCIS close to the mucinous tumor, which I now know is quite common.
Dr. Britta Weigelt and her colleagues in the UK have devoted their research to rare breast cancers. Since mucinous is a rare breast cancer, she told me in an email that the pathology report is paramount for treatment. Perhaps you can ask that another pathologist read your slides and determine whether or not it is pure or mixed since mixed has a prognosis in line with traditional ductal, whereas pure is more "favorable." I think you want to be doubly sure with what you are dealing with.
I had the Oncotype DX test done on my tumor and it came back as low risk for future recurrence. I wasn't too pleased, however, that it was at the high end of "low risk." The only cavaet is that, according to the Johns Hopkins Ask the Expert website devoted to breast cancer questions, the Oncotype DX test is not validated for this rare type of cancer. I saw a debate about a Oncotype DX test result for a Tubular breast cancer that is considered more "favorable" than mucinous, that exhibited a VERY HIGH recurrence score. Go figure!
I know exactly how you feel regarding the lack of research that might guide our care. I think, at the end of the day, a solid pathology report and experienced oncologist should be able to give you the best possible outcome. I was lucky to get three oncologist opinions, one of whom was my niece and I am very comfortable with my treatment.
I wish you and my breast cancer sisters my prayers and hope for a full recovery.
Just wanted to say Thank you so much for responding to Jolamine's post....she has hunted high and low in an attempt to find good solid advice. I know she will be very pleased to see your response when she logs on
Thanks so much
Sorry for not replying sooner. I have been away from home for a few days and without internet connection.
Very many thanks for your response. As Dizzie rightly says, it is reassuring to at last meet someone who can appreciate my concerns about the way my treatment is being handled. I have hunted high and low for others who have mucinous carcinoma on many sites worldwide and, so far have only come across yourself and a few of your American colleagues. I have not encountered one single British person with this type of cancer; I have read all posts on this subject at breastcancer.org and have not found anything new for a while.
It is good to hear that you have been happy with your care, but you do seem to do things very differently in the States.
I had surgery nearly four months ago and am still being messed about with unclear margins, lack of appropriate diagnosis and post-op treatment and have had my reviewed pathology results withheld from me since they were done in September. Initially, I was informed that I would need to go through the legal department of medical records to access them. I was then advised that the hospital didn't have copies, so they mustn't have been done.
When I saw the second oncologist in a different hospital, she had a copy of one of these results, but not the other. When I returned to my own hospital and asked for a copy of this, which I need for travel insurance, I was informed that they didn't have a copy of this in my records. I was then referred to the Hospital Administrator, who promised to look into the matter last week and phone me back yesterday.
Needless to say, I was not contacted, but, when I phoned the hospital today I was advised by the Administrator that I would need to fill in a signed and witnessed request for release of these papers. I pointed out that I had done this at the beginning of the month and that there is a statutory duty on the hospital to release such papers within 10 days.
I was then informed that the application form which I had submitted to medical records at the beginning of this month, still had not been signed off, so the reviews could not be released today. The pathology reviews were requested two months ago, so I do not feel that it is unreasonable to expect to be told the results by now,
Today, I was informed that the doctor who can authorize the release of my pathology results will be in the hospital tomorrow, so I am again awaiting a call.
I have given many members of my care team copies of the George Perkins study, but it has been dismissed as the first of its kind and, therefore ridiculed or deemed as inconsequential.
I have also produced other papers outlining the difficulties in diagnosing mucinous carcinoma and supporting the need for additional diagnosis to detect it. Again, these have been ignored.
At my last routine mammogram I indicated that things didn't feel right, but this was again dismissed. My original tumour did not show up on routine mammograms either. In fact, it didn't show up until after I had found it myself and gone to get it investigated. It is for this reason that I do not feel that I can rely on a very cursory ultrasound alone, particularly when I am still having pain and discomfort in both breasts and can feel a lump in my other breast which is slowly increasing in size.
To my knowledge no test has been done to determine how sensitive I would be to chaemotherapy, but the first oncologist informed me that chaemo would do nothing for me.
My surgeon only treats 4 or so cases of mucinous cancer a year, the original oncologist 1-2 and the new oncologist 0-1. These are not very reassuring numbers when one's life hangs in the balance and none of my care-team are prepared to look at this as something unusual or to work alongside me to achieve the best possible outcome.
I am going to have a private Thermography scan done this week to see what it shows up, but have to travel a considerable distance to get this. I see my surgeon again at the end of the week to see if he can explain why he decided to leave me with unclear margins and, to discuss yet again the possibility of getting an MRI.
Keep your fingers crossed that I'm luckier this time round.
I find the constant battle to try and get the information and treatment I need is wearing and I don't know how much longer I can keep up the fight.
I read through your posts on both threads and have just a few more thoughts to share as they might help put your feelings into perspective. Let's first review what must be sorted out:
1. Clean margins.
2. Pathology report.
4. Radiation time line if you've had a "successful" lumpectomy. Here in the United States the Standard of Care is for radiation following a lumpectomy if you are under 70.
5. Discussion with medical oncologist regarding hormone therapy and chemotherapy. Please note that earlier this year in the newest 2010 NCCN guidelines, updated from 2006, they changed their recommendations for mucinous breast cancer therapy. Again, these are considered the Standard of Care in the US. Note pages 20 and 70:
http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf The 2006 version is as follows. Note page 54: http://screening.iarc.fr/doc/Breast_VIII.pdf]]>
Now, putting your feelings into perspective:
When I visited with each of the physicians, I asked them about the number of mucinous breast cancers patients that they cared for. My surgeon mentioned that during the last 25 years, he has seen approximately 30 patients, that is, 1 or 2 at most, a year. He said, all of them were living or had died of something else. The radiation oncologists, there were two of them, saw between them, close to 300 cases in the last 20 years. Both only saw one bad outcome, each. When I asked what happened. One said that he thought the pathology report was "wrong." The other doctor said that the woman got another breast cancer afterwards. Speaking with the radiologist who did my wire localization, she said she sees about 3 cases a year and mine looked "good" whatever that means. My medical oncologist also sees a handful of cases, from time to time. None of his staff knew of any other patients besides me that they are presently treating with mucinous bc. So what does this all mean? As I explained to you over at breastcancer.org, my husband has an EXTREMELY rare metabolic muscular dystrophy and when he was diagnosed with it almost 16 years ago, THERE WERE FEWER THAN 500 PEOPLE, WORLDWIDE, THAT WERE DIAGNOSED WITH HIS DISORDER! So, while mucinous breast cancer accounts for 2% or less of all breast cancers, as far as I'm concerned, THAT IS A HUGE NUMBER! So while there may be a dearth of research and statistically significant numbers to verify EXACTLY what our treatment should be, now that I am several months behind active treatment, I can say now that I am "comfortable" with my treatment plan. For sure, I would have been way more comfortable if there was a physician who "specializes" in rare breast cancers guiding my treatment. Unfortunately, as you have already seen for yourself, there are none!!! So, at the end of the day, you have to surrender to the fact that you must put your faith in the hands of the person whom you believe can offer you the best treatment plan and then move on and hope and pray, like I do, that years from now, you will have made the right decision.
I hope that the above mentioned issues get resolved this week so you can begin "finishing" your active treatment and then, like me, begin to move on. I hope that a year or two from now we will both be well, both physically and emotionally, and join the rest of our mucinous breast cancer brethan who no longer feel the need to discuss regularly our treatment and survival.
Good luck, Jolamine. My prayers and best wishes are with you. Keep me posted!