Mucinous Carcinoma of the breast
Comments
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Cliona, yes, I had a CT scan before my surgery, but it didn't cause any extra delay, I was waiting in any case and taking tamoxifen to see could they make the tumour smaller and make surgery easier and safer, I asked about possible spread and they said, Wow, What a good question, yes we shoudl check shoudln't we. AAARGH!!!. So fortunately I went into surgery knowing that the rest of me was good, which was reassuring. Does make you wonder though. Cos if it has spread, there's not much point focussing on the primary. And for an older lady, the fact that surgery had its own risks makes that balance much more important, especially where lymph nodes removal, and the risk of subsequently developing lymphoedema which can be quite disabling, are concerned.
All the best wishes for your mother.
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Hi Cliona,
My excellent surgeon, upon examination and Fine Needle Biopsy, was 95 % certain that my mucinous breast cancer was local, but he said it's just good procedure to order a PET/CAT scan . (I had already had Sonogram and MRI at another hospital).
My PET/CAT scan showed no other cancer anywhere in my body. However, just be aware that those scans don't pick up tumors smaller than about 1 cm.
My understanding is that only surgery and subsequent pathology really reveal the size and extent of the cancer. Still, I think my surgeon is quite certain it''s local, despite having ordered the CAT/PET scan.
Didn't read through all the replie to your post, so sorry if this is repetitive. Just sharing my experience.
I wish your Mom well.
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Hi Hymil,
I also am taking Arimidex now before surgery to see if the tumor shrinks. My oncologist and surgeon ordered it. Trial will be for about three months.
Did the Tamoxifen help shrink your tumor?
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Thank you all for your replies. The nurse called me this morning and said it was normal practise for the surgeon to order a CT scan, and that it wasn't because they suspect the cancer has spread but more just a precaution. So I'm a bit mless worried about it now. Your replies have put my mind at rest a bit too. We're going in this afternoon for the scan and she said she should have a date for surgery then too. Thanks for the good wishes for my Mom. :-)
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I too had a precautionary CT scan before surgery.
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I'm curious to know who had scans and who didn't and for those who did, why? I wonder what guidelines there are for doing them, especially in early stage bc. Likewise, I think there is also some controversy in doing regular blood work for tumor markers in early stage BC as well. For the record, I did NOT have a CAT scan. I had an initial MRI during the diagnostic stage, and none since. My radiologist told me that my next MRI will be at least six months from now, unless when I meet with my breast surgeon, in a few weeks, he thinks I need one sooner.
I also think that if these physicians are going to order these tests "routinely" during the diagnostic stage, then they should be clear with the patient that they are doing these tests as a "routine" and not because they have "suspicions." And by all means, if they have "suspicions," then they should articulate that ahead of time to the patient. Just MHO.
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Here's some additional information regarding tumor markers:
After treatment of the primary breast cancer is
completed, checkups by the doctor are done periodically (usually every 2 - 3
months immediately following completion of all therapy and gradually increasing
to six month or even yearly intervals). A mammogram of the non-treated breast
and the breast treated with lumpectomy (if that was the case), is done annually.
Sometimes mammograms are obtained at more frequent intervals in the first year
or two after breast conserving treatment to establish a new 'baseline'. A pelvic
examination is part of the routine annual checkup, as it is for women with no
history of breast cancer. Some physicians also do blood tests to check tumor
markers recurrence (proteins secreted by some breast cancers which can be
monitored for disease activity) such as CEA, 15-3 or 27-29, but these tests have
not proven effective in detecting recurrence much before symptoms occur. If a
patient is experiencing symptoms and these markers are elevated, they are
helpful in raising suspicion that the symptoms are due to recurrent cancer. In
general, tumor marker studies, various scans, such as a bone or liver scan, and
x-rays are not routine and are advised only when there is a sign or symptom that
the cancer has recurred (returned).0 -
I had a CT scan just a week after surgery to measure up for the radiotherapy treatment, but I don't know about a CT scan before surgery. Will start praying for your mum right now. Blessings
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Here's a little bit more information on tumor markers...Definitely worth talking about with your doctors if these tests are going to be prescribed:
Can a Tumor Marker Blood Test Be Used for
Early Diagnosis?
The use of tumor markers in the early
diagnosis of breast cancer is not generally recommended due to the lack of
specificity and sensitivity of the tests in the early stages of the disease.[3] For example, elevated CA 15-3
levels are present in less than 10% of patients with stage I disease, and
elevated CA 15-3 may also be observed in healthy
individuals, or patients with certain benign diseases. CEA has been observed to
be elevated in only 26% of breast cancer patients.[4]Breast Cancer Tumor Marker Blood Test for
Prognosis
There is some evidence to suggest that
tumor markers such as CA 15-3 may have significant prognostic use in assessing
patients diagnosed with the disease. For example, elevated pre-operative CA 15-3
has been correlated with both early relapse and death from the disease.[5] Follow-up monitoring of tumor
markers after surgery may also provide useful prognostic information.[6]Tumor Markers May Be Used in
Monitoring
Some tumor markers such as CA 15-3 and
serum HER-2 may be of use in predicting the response of a patient to particular
types of therapy. Elevated HER-2 has been shown to indicate an increased
likelihood of poor response to endocrine therapy, but is also associated with a
good response to Herceptin combined with chemotherapy.[7] Tumor markers may therefore be used to help
determine the course of treatment to be used.
Tumor markers may also be used as a
surveillance tool following primary treatment, or in the monitoring of response
to therapy in advanced disease. CA 15-3 is considered to be the most effective
tumor marker in these applications.[8]0 -
" voraciousreader wrote:
I'm curious to know who had scans and who didn't and for those who did, why? "
I had both a CT of my chest and abdomen as well as a bone scan. Both were ordered by my Med Onco during my first visit with her 6 weeks after my lumpectomy. The bone scan was done 4 weeks later and the CT 3 weeks after that. My Med Onco considered it routine. My blood work was fine. If there were symptoms my surgeon would have ordered them and they would have been completed within a few days.0 -
Chelsea, the tamoxifen didn't make the lump any smaller like they wanted, but at least it wasn't much bigger! Also by the time it was out, it was mostly mucous and hardly any tumour cells, so i think it probably reduced the tumour activity but the bad cells that were left were still making more mucous?? at least that's how I figure it and no-one has told me any different.
Voracious reader, Why did I have a scan? Because it mattered to me whether I had spread, having not long earlier lost my dad to cancer secondaries, so I asked the chiefs straight out, and it was the quickest and simplest way they could give me an answer. It also affects the decision on chemo. I suspect they also wanted to know in case I get written up as a short unusual-case-report in some medical journal - it would be sweet vengeance on all these medical students if I can become an exam question!
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Thank you, Hymil, for the info on the Tamoxifen.---Chelsea
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It must be protocol here in Canada maybe? They just told me that I'd be having the CT scan and bone scan and I didn't even think at the time to question anything, lol, I just did them. Met with my surgeon for my check-up last week and she's ordered an MRI sometime soon, just as a follow-up.
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Sherbear,
We have almost identical DX, my Oncotype was 18 (and we pay for ours in MB) though and no positive lymph nodes.
Did you have some positive lymph nodes?
Debra0 -
Hi. I had a routine Mammogram at Breast Check. I got a call back, they did a core biopsy and I went for the results on Tues, they found a very small lump and cells in my lymph nodes, I have to have a battery of tests now and a lumpectomy. I am very scared and feel very nervous of the whole thing. Its like I can't sit or relax. Any help?
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Sandysoo. Sorry to hear about your diagnosis. Now is just a moment in your journey when everything is raw and unnerving. I promise you will get through this phase and enjoy life again. That's why it's dubbed the new normal. When you have some quiet time, read this thread. We've all started our journey and we offer you this thread as a map.
As you have questions or need strength, we are here. Thoughts and prayers to you.0 -
Hi voraciousreader
I cannot thank you enough for your reply. it has meant so much to me. My mind is racing like 1000 miles an hr. Im scared now that in the tests they will find something else wrong. All the usual fears.
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Nah, these fears are NOT usual! You will find clarity and comfort... It's just going to take some time.
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Hi Bellydancer, yes, we almost have the same dx. I never noticed that I didn't add my LN status to my info at the bottom, but I was negative for node involvement.
Sandysoo~ So sorry you have to go through this, it's shocking and scary and so many things, but it does get easier to accept and move ahead with whatever treatment.....and a new 'regular' life......sounds so strange and trite......sorry. But ask away, everyone is here to help and learn.
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Bellydancer, did you do chemo and rads and are you doing hormonal therapy (Tamoxifen or an AI)?
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Hi Sherbear,
I had a lumpectomy, my profile doesn't show it properly but my tumor was 3.4cm, then 16 sessions of the full breast radiation followed by 4 boosts to the tumor sites. I have been on Tamoxifen since radiation ended in Jan 2011. My case went to case conference to discuss Chemo and the recommendation was to " talk to the patient about chemo..". They suggested 4 TC if I decided to do the chemo. There wasn't strong guidance either for or against the chemo and I decided against it. They did say without the pure mucinous subtype the recomendation would have been for chemo due to tumour size p>0 -
Hi Bellydancer, I ended up doing chemo due to my age and tumour size. I heard it from all 3 oncs that I consulted with so I was alright with it and ended up doing pretty well through it. My one onc had told me if I was 18 and above on my oncotype, he would have recommended A+TC so I was happy when I got my # back. They labelled mine as having 'mucinous qualities', and not pure. So confusing.
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I am hoping our resident expert chimes in here (nudge nudge hint hint VR)
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So the main difference between our DX would be the number of mucinous cells, the pathologist often used the term "mixed" to describe some mucinous tumour with a lower number of mucin. Again I am hoping VR provides the appropriate definitions. So till then......0 -
Sandysoo...From diagnosis onwards its a very scary time and certainly causes a lot of fears but quite honestly its all been a lot easier for me than I anticipated. The lumpectomy was far less painful than I anticipated, the pain relief was great, and no complications, & all healed well. Had some initial difficulties with Tamoxifen but thats really settled down well after a couple of months.Radiotherapy was heaps easier than I was led to believe especially with using plenty of cream, walking 30mins after treatment and drinking plenty of water. I had lots of prayer support from family, friends & church which was muchly appreciated. So my prayer for you is that its far less fearful than you expect. Blessings.
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Bellydancer...You raise an interesting question regarding the differences WITHIN mucinous breast cancer. If you go back and read through the thread...I posted some interesting research regarding the different presentations of "mucinous" breast cancer. Of course, like you mention, the percentage of mucin differenciates, pure from mixed. In order to be classified as "pure" it must have at least 90% mucin cells.
Back in the day, and I'm referring to just a few years ago, it was the pathologist's eye that told us what we had, whether it was pure or mixed....and then classified it under the "traditional" staging system. That led to a lot of debate and MISdiagnosis. One of the reasons why, was because mucinous, along with tubular and a few others, are SO rare, that pathologists don't see them often and therefore it is sometimes hard for them to expertly classify. I had this discussion with my RO and he said that all of the patients that he saw in his last 20 years of practicing medicine, who had mucinous breast cancer did well...except for one person. And that person, he thought was not properly diagnosed. He thought the pathology report was WRONG.
So, when there is a diagnosis of a "rare" bc, getting that surgical pathology report examined, by at least TWO pathologists is necessary, so there are NO mistakes.
Moving forward to nowadays, I posted many articles about the characteristics of mucinous breast cancers. From what Hymil forcibly mentioned, there are mucinous breast cancers, and then there are mucinous breast cancers. And she's correct about that! Most mucinous breast cancers are grade 1 or 2, especially if they are "pure." There are exceptions, including pure mucinous breast cancers that are HER nu Postive and/or Grade 3. But, as resesearcher Britta Weigelt, Ph.D., pointed out, genetic testing has changed the landscape of determining the characteristics of these rare tumors. Now doctors get a better "feel" for the tumors by the genetics of them. As she mentioned to me, she expected that, based on the genetic tests we now have, including the Oncotype DX test, we would find that with MY pathology based on the current grading system, my tumor's risk of distant recurrence, would come back in the low risk category, which it did. While she and her amazing colleagues continue parsing the genes of rare, favorable breast tumors, we will one day, probably learn about EXACTLY what genes we have that also make our tumors, more "favorable" than most. Hopefully, that can help with the understanding about what makes a tumor more docile or aggressive.
Now, getting to "mixed" mucinous breast cancers...those tumors who have less than 90% mucin, t are presently treated more like the "traditional" breast cancers and were thought to be like more traditional breast cancers. Not so fast. According to Dr. Weigelt and her colleagues recently published work, genetically, mixed mucinous breast cancers are STILL more like pure mucinous breast cancers.
So, what does all of this mean? It means that our traditional ways of examining rare favorable breast cancers are antiquated. With each new discovery of the genetics of how these tumors vary from traditional breast cancers, will hopefully give us answers how to effectively treat them. The elephant in the room is which ones are we OVER treating vs. UNDER treating. Hopefully, with each new genetic test our medical oncologists will have a better feeling for how to treat us.
Anyone else care to chime in?
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Hi Sherbear
Thanks so much for your reply. I guess Im still reeling from the shock. I had a routine mammogram two years ago and it was clear. Then I reluctantly went for the latest one, and I got a recall.......mmm, I thought Oh well, maybe they need to do the mammogram again.?? I have no symptoms or visable lump......like unreal, but I still have to have a lumpectomy and they said I will need some chemo?? but I have talked to women who are completely fine a year on.
Thanks again guys
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Hi Tricianne
Thanks so much for your words of encouragement, I haven't been in hospital since my last child was born 24 years ago, so Im just scaring myself I think. Many blessings to you.
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One more thing I want to add, the current genetic tests, such as the Oncotype DX test, while used for mucinous and tubular cancers, has not been validated as it has for traditional ductal cancer. My MO thought that the Oncotype DX OVER estimated the distant recurrence risk. If you've had the test and look at your score, there's a range for recurrence. With a score of 15, which gives me a 10% chance of distant recurrence, the range given was 7-12%. He thought, while the score measured an average 10% chance of distant recurrence, he thought I was closer to 7%. I posed the question to him, as well as Lily Shockney over at Johns Hopkines, while those of us with mucinous breast cancer have those oncotype breast cancer genes, don't we also have other genes, yet to be discovered, that also are protecting us and that's why many of our tumors are classified as "favorable." The answer was a, probable "yes" because, studying these tumors on a genetic level is still in it's infancy and "yes" there probably are more favorable genes waiting to be discovered.
My mother was recently diagnosed with a rare, favorable lung cancer. Following genetic testing it was determined that she would respond to a chemo pill. At 86, it looks like she'll be celebrating many more birthdays. Looking to the future, we'll all probably have the genes of our tumors more closely examined and we'll be receiving targeted treatment based on those genes. Then, none of us will be over or under treated and many of us will live to be 120!
In the future, I forsee, no one asking us what stage we are. Instead they'll ask more specific questions about the genetics of our tumors. Think about it. Wouldn't you want to know more about why some women with stage 4 cancers are living, long productive lives? There's got to be something in the genetic make up of their tumors that are as "favorable" as those genes in mucinous and tubular tumors. That's where we're heading....0 -
Oh Wow! Voraciousreader
That is fantastic news about your Mother. 86 Wow again.?
I have to start my tests next week before the lumpectomy, and I am imagining all sorts of horrors as I am a smoker. Im thinking they will find something else wrong?? Im just very scared about the whole process, but thank you for your support.
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Congrats to your mother VR, that is amazing! And thanks for all of the info that you keep posting, I am learning more about mucinous BC from you than from my doctors and oncs (who readily admitted to not knowing a whole lot about it to be honest.).
Good luck with your tests Sandysoo, they can be daunting, but it's better if you have a good support network. Do you have that? Regarding the smoking, I have seen that there is a stop smoking support thread somewhere here if you are interested. Is it something you're looking to do or is that just too much considering everything else that is going on right now?
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