Mucinous Carcinoma of the breast
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Hello to all
Just wanted to give an update of my journey which has seemed a long one that keeps on going.
I had a lumpectomy and SNB followed by tamoxifen .Six months later I was found to have a large corpus luteum and another 5cm cyst on both ovaries so was advised to remove them and begin Leterozole. (both sugerys were 'easier' to recover from than I had expected).
I then discovered two colonic polys which have been recently removed, awaiting histology but look benign).
I have also had an ultrasound scan of my thyroid which shows 'changes' that the dr was not overly concerned about but I have to go back for a second scan in a few weeks...'for completeness'...yikes...
Last week I saw my breast surgeon for follow up ( in England nhs I have been discharged by the Ongologist). My mammogram was clear but I mentioned a recent development of ? asthma , wheezy chest and an achy hip after jogging ( I am in my mid 40's)...so I am being sent for my first ever 'staging scan' a CT of my Thorax , abdomen and pelvis...yikes...
I would love a year off...
On a better note we are getting a new puppy !!!! yipee!!!, furry chaos , lo's of walking and summer camping holidays here I come
Life is too short and hold much beauty xx
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xyz and nurse! Thanks for updating us!
X....I'm not surprised that your tumor shrank 20%. According to one study, adjuvant chemo wasn't as effective on mucinous BC as it was on IDC. That said, a 20% reduction with adjuvant endocrine therapy sounds great! Of course 100% would have been cause for spectacular celebration, but if you read the Japanese study, it appears that those mucinous patients who did the adjuvant treatment, STILL did well following surgery!
I know you are having a tough time, but hopefully, once you pass the surgical part of your journey, you should begin to feel better and more confident.
Nurse...by the time you read this, I hope you are post-op and doing better. Please keep us posted on your recovery. You make an interesting point about mucinous BC doing what it wants. That point reminds me about what one of my Oncology physicians said to me. Although I haven't found a study confirming what he said, he mentioned that if I had a recurrence or a new primary, it was more likely to be another mucinous BC. I really would like to know if that statement is true.
Wobbly! You sound like me!!!! My body likes to make all kinds of polyps and cysts!!!! I'd rather not enumerate all of my polyp and cyst surgeries because I would bore you and all of mucinous sisters, but let me just say that my polyp and cyst issues keep me busy! In fact, today I see my endocrinologist for my 2cm+ cyst on my thyroid! Yikes!
That said, I recently got clarity on why I've had all kinds of joint issues which has required multiple procedures and surgeries. My diagnosis has also explained why, many years ago, I had a collapsed lung that required major surgery. A month ago I was diagnosed with a genetic connective tissue disorder. While no one has been able to narrow it down to the exact name of the disorder, it has been determined that my body is not good at producing collagen properly. Not only has it been a relief to have a diagnosis, it helps me to understand that all of my orthopedic issues weren't caused by dumb luck! I'm finally feeling so much better emotionally and physically. During the last year, I went from doctor to doctor to get my chronic pain under control.And guess what? My journey paid off! I AM COMPLETELY PAIN FREE!!!!!!! While I'm taking more meds than I would like to, the bottom line is that I feel the best I have ever felt!!!!! Please don't get the impression that before my diagnosis I was walking around debilitated, I wasn't! It just felt like every single night before I fell asleep, I prayed that the throbbing pain would disappear by morning. And it did! However, as I awakened in the morning, I would pray that I wouldn't get into feeling pain as the day went on and on. Now, I am truly feeling much better! Yay!!!!!!
I wish all of my sister's well!!!❤❤❤
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Thanks vr! It's nice to see this thread continue.
That Japanese study is one that I return to often. I think I'm more anxious than my doctors. Fortunately they aren't dismissive and are very willing to accommodate my requests. My MO is incredibly up to date with the latest research and that helps. (Well it also helps to have really good insurance, I have to admit.)
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x...❤👍
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I am 60 yr. Old diagnosed with mucinous breast cancer her2 neu3. Having chemo and radiation. 1 lymph node removed. It was clean. The first cut on lumpectomy was clean also,is this treatable? Will herceptin work on mucinous breast cancer?
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feelingthemagic had HER2+ mucinous and had herceptin and is doing well! Keep us posted! You should do well too! Good news your nodes were clear!
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WELL! I had the surgery and will get result's Thursday! I DO know I will be having radiation on total breast, how much I don't know yet. What I do know if it is Pure Mucinous it is good but if not pure well you can figure that out. This a reacrucce in 8 months, radiation per Slavi the first time and hormone receptor's for the past 7 months, guess they did not help, I am so disappointed I could scream. This stuff is no kind of good! Next time Doctor will due a mastectomy! I have read so much Doctor said quick. Surgery is the easy part LOL I found that out, I am a nurse I have to lift people and turn turn them, that is gone I will be filing for retirement just to get some kind on check. This stuff is not as good except if it is pure. Comment back!!!!!!!!!!!!!
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nurse....I hate to question each patient's treatment decisions and you certainly can't go back and do over...that said, I will give my personal opinion which is only my opinion. Originally I was offered radiation seeds and instead chose whole breast radiation instead. I understand that whole breast radiation is standard of care while partial breast radiation is still considered experimental. Most insurance companies will pay for partial breast radiation and many patients will not realize this distinction. While there are very strict parameters in deciding who should be offered partial breast radiation, I didn't think it was a good choice for mucinous BC especially because chemo is less likely to be effective. So, it seemed to me that radiating the entire breast was the way to go since I thought hitting the whole breast with radiation might kill any stray mucinous breast cancer cells.
Nurse...I think you too should ultimately do well. Hang in there!!!!!
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I always have mixed feelings when I see newbies here. So sorry you've had a reason to find us. Very glad you've found us... it's here I've gotten my best information, and felt much support. Sending everyone good thoughts.
Roziekat, I was diagnosed 4 years ago with mucinous with her2+. I did chemo (listed in my signature here) and herceptin. The first recommended protocol was changed when I questioned the rarity of the diagnosis and their reason for the choice of protocols. They then consulted with the top breast cancer oncologist in Canada who recommended the protocol I did have. It's almost like the first oncologists were lumping me in with a more "traditional" treatment because there were no other immediate answers for this diagnosis.
So, chemo it was, herceptin for a year, tamoxifen for 2.5 years, now on exemestane. And am doing well. I'm sorry you are going through this, it's hard. I honestly was pretty happy I had the herceptin option when the Her2 was positive, though - Not that many years ago, a person diagnosed with HER2+ had no 'extra' help.
VR, Hurrah to pain free!! You so deserve that!! Chronic pain is brutal, always a drain on energy. What a relief this must be for you. Celebrating?0 -
I always have mixed feelings when I see newbies here. So sorry you've had a reason to find us. Very glad you've found us... it's here I've gotten my best information, and felt much support. Sending everyone good thoughts.
Roziekat, I was diagnosed 4 years ago with mucinous with her2+. I did chemo (listed in my signature here) and herceptin. The first recommended protocol was changed when I questioned the rarity of the diagnosis and their reason for the choice of protocols. They then consulted with the top breast cancer oncologist in Canada who recommended the protocol I did have. It's almost like the first oncologists were lumping me in with a more "traditional" treatment because there were no other immediate answers for this diagnosis.
So, chemo it was, herceptin for a year, tamoxifen for 2.5 years, now on exemestane. And am doing well. I'm sorry you are going through this, it's hard. I honestly was pretty happy I had the herceptin option when the Her2 was positive, though - Not that many years ago, a person diagnosed with HER2+ had no 'extra' help.
VR, Hurrah to pain free!! You so deserve that!! Chronic pain is brutal, always a drain on energy. What a relief this must be for you. Celebrating?0 -
feeling! I don't have time to celebrate!! Now that I'm pain free, I'm on a tear getting my many other health concerns under control. I'm going to start physical therapy for balancing. Due to my feet and joint pains, my balance was affected. Relied on my hips rather than my feet for balancing. Now I have to retrain my core and that begins with my pain free feet. Last week, I was FINALLY diagnosed with a hearing loss which I suspected I had had. So, I will turn my attention to getting getting hearing aids as well. In between....back in March, my daughter made me a grandmother. Unfortunately she required a lot of my help because her son's doctors thought he had colic. Turns out, they were wrong! Two weeks ago, my grandson was operated on for pyloric stenosis. Mom, dad and baby are doing better. I thank my lucky stars I've been feeling well because my body and mind were really punished through the baby's crisis!
The best news I have to report is that the day after the baby was released from the hospital, I flew out to the Mid-West and helped celebrate my younger son's surprise engagement!
Feeling...I'm feeling the magic! It seems that despite all the adversity that we are dealt, there is often that reserve resiliency that bubbles to the top of us and surprises us every time! When I think of all the good and bad things that have happened in my life during these last few years, I marvel every time I have the energy to think! 😇 I hope other sisters here will keep in mind when their journey seems hard and tiresome and worrisome that life does grow more and more rewarding over time. The bumps hurt, for sure. But we all need to treat ourselves gently and let life unfold...with all its magic!
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Voracious, I knew a baby was on the way but missed that you have a grandson. Huge congratulations! And wow, rough few months - poor little guy. So good you were well enough to be helping. My oldest granddaughter was 2 months premature... I know extra help is great at anytime, but with little ones who are more vulnerable, it's essential. Sending good thoughts to you and all in the family.
Yes, we're on the same page ... life is crazy and challenging, and there are miracles and magic. So thankful for that. For those new here, miracles do happen - my daughter went through ovarian cancer in 2010. It was brutal, and she was told she would never have children, especially due to the chemo, and one ovary left. She had her first daughter in 2012. Healthy, happy, incredible.. and her second daughter, equally spectuacular, in 2014. So, believe nothing traditionally said that takes away your hope, and have faith in miracles, joy, magic. ~smile~
ps. good wishes on getting balanced!! AND your son's engagement!
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❤
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I found out I will also have to have chemo.docetaxel herceptin,carboplatin. Plus radiation from lumpectomy.Is this standard for mucinous breast cancer? I am now wondering if I would have been better having mastectomy instead of lumpectomy. I was not aware of what her2+ was about when it was recommended that lumpectomy was a choice. ...
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If I knew that whole breast rads, had been the best way I would have done it, but for some reason they push the experimental in the beginning. My problem is that it will burn my lung up and I will have SOB, guess I have no choice, do you know how strong and how many treatments are standard for Mucinous. Thanks for your encouragement'
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Roziekat, there isn't a standard for mucinous with her2+, still so rare that even the nccn site simply recommends redoing pathology if the results say mucinous with her2+. However, I do know that the top Canadian Breast Cancer oncologist, with a team, determined the chemo protocol for me, and yours is the same, so perhaps you can trust their expertise and know they are offering you the best protocol. (Personally, I'm glad to hear they are recommending the same protocol - helps me also feel I've done the right thing. ~smile~ ) When do you start chemo?
With mucinous, I think it's standard to recommend a lumpectomy. Least invasive option for a type of cancer normally considered not very aggressive. I had a lumpectomy, for what we thought was only DCIS, but during that is when they found mucinous (and also didn't get clear margins,) so the masectomy was the obvious next step. It is so hard when first diagnosed and you are asked to make a lot of decisions and still know so little. If your doctors felt the lumpectomy wasn't the right choice, do you think they would have advised you otherwise? I suspect so.
Good wishes to you, and to Nurse88 in this difficult time of making decisions and beginning treatments. (Nurse, sorry I don't know anything about rads - wasn't in my treatment plan when I had masectomy and chemo)
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rozie....I second feelings statement. I see you also asked John's Hopkins the same question. Their advice is also sound. If you have any concerns, ask your physician to present your case to a tumor board and see if their recommendation gives you confidence and comfort.
Nurse, I hope you are not second guessing your past treatment decision. Most of us can only make our treatment decision based on less than concrete advise, especially when we are dealing with a rare type of breast cancer. Rest assured, you made the best decision that you could at the time. I often hear from other cancer survivors that we all know we made the right decision when we live long enough to die from something else. I do get the frustration and anxiety that comes with diagnosis and treatment and then more treatment. I've been there and done that too. Long before my cancer diagnosis, I had not one, but TWO different life saving emergency operations. My life has been filled with medical dramas! And, if you put the DH into the medical drama mix, we were made for one another! Sometimes the DH and I feel like we are the walking wounded....BUT, I don't have time for pity or worry. When I was diagnosed with cancer, I only shared my diagnosis with a handful of people. I did my treatment and catapulted myself through time and landed on my feet energized and ready to fight what may lay ahead.
I do wish you much strength to continue your journey and reach a road that will be smoother and more enjoyable. Rosie....I wish you the same!
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Thanks for your encouragement vorarc, I understand about pity I don't tell a lot of people either. My husband doesn't want me to do Radiation, I just tell him what ever my Doctor say's I do, tomorrow I will find out everything Doc. appointment in AM. Haven't ate much because of thinking about it, but I guess it is understandable. I know we all have difficulties we have to face so far it hasn't broke me down yet. Try to stay strong and act as if everything is nothing I can't do alone, we can not change what is, we just have to go with it and have hope. Prayers to you all
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nurse! You sound like a good trooper! You also must be a great nurse! Both my mother and sister are nurses. You all are quite noble! Thank you for choosing your occupation! You all genuinely make an important difference in the lives of those in need!
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Vora my oncologist is send my original pathology slides out at my request to magee women's hospital for second opion...chemo starts june9...does chemo have dosage like low med, or high dose.....what can I expect.....have radiation also
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rozie....great question regarding chemo AND good for you to request more opinions! Regarding types of chemo....it is an art! Although I didn't have chemo, my doctor said if I insisted on chemo, he have done a "light" chemo. I think a good medical oncologist will walk you through the best protocol that works for you and while giving you the least amount of risk and the greatest amount of benefit. I think your situation should be presented by the doctor's tumor board. Good luck!
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Hello everyone, I'm brand new to this forum. In 2007, at age 50, I had a lumpectomy and radiation for a mucinous tumor in my right breast. Nothing spread to lymph nodes. Yesterday, I found out that I have two small new tumors: "invasive ductal carcinoma with focal mucinous features, low grade ductal carcinoma in situ" and "invasive ductal carcinoma with mucinous features" in the same breast, different locations from first tumor. Do these descriptions mean that they're mixed rather than pure? And what is the usual protocol for second mucinous cancers? I will meet with the surgeon next week. Are there particular questions you suggest I should ask? I have to admit, I was taken by surprise on this, since I had never heard of anyone getting mucinous carcinoma twice in one breast. Just don't know what to expect.
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not sure if it is pure or not. Different pathologists use different technical terms depending where they were trained. That is one of my peeves that there is no universal descriptive words.
With respect to having the same type of mucinous BC more than once, my physician told me, early on, that if mucinous BC is what your body likes to make, if you get another BC it would probably be mucinous again. Never saw that substantiated in the literature. But..here YOU are. I do know of one other woman who had mucinous, but then few years later she got an aggressive HER2 positive garden variety BC.
Now, regarding treatment, ask for the Oncotype DX test and ask for the BCI test as well. It should confirm whether chemo is indicated and or for how long you might need endocrine therapy.
Since you already had radiation, you won't be a candidate for it again. So, I think you might have to have a mastectomy. Not sure if you will be offered a lumpectomy without radiation unless you are much older. Keep us posted. I wish you well.
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Pittsburg, I'm so sorry to read about your recurrence. VReader is our resident expert poster, who's advice would be well taken. I would second your considering a mastectomy, as multi-focal mucinous is more common than thought. (I think the MD Anderson study quoted 38% were multi-focal.) VReader brought this up in previous posts.
Have you had a MRI recently? A MRI wouldn't necessarily find all smaller mucinous lesions, although it might. Also 2nd and 3rd opinions on pathology might be in order to determine if your slides have the 90% or greater mucinous cell content. To VReader's point, I had 4 patholgy opinions, which all varied (mixed vs pure mucinous and papillary and IDC). Medical science is not perfect and definitely inconsistent. You might need to pin down your pathologist to determine if it's pure or mixed.
As VReader mentioned, an Oncotype test would be an excellent option. Had you been on hormonal therapy, not that it's required by all MO's for small pure mucinous in every instance.
I cannot stress enough the importance of 2nd opinion pathologies, especially on the specimen from your final surgery. The M.D. pathologist patient (who posted on this site, but I forgot her name) also had stressed the importance of 2nd opinion pathology on mucinous. .
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we....the study you refer to regarding muti-focal was reported in 2009 by a radiologist. I think that was a wake up call to all Oncology practitioners that just because a patient has a "favorable" mucinous BC, does NOT mean it should be confronted lightly. All of the necessary diagnostic and treatments should be on the table. I think his report as extremely illuminating.
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Concur on the second opinion pathology. Look back in this thread for "Red Sunshine" (the pathologist who wrote a book by the same name). Probably about November 2011. I remember because that was when I realized I should have a second look at the pathology slides. It was too late to consider when making my chemotherapy decisions but has been been helpful for informing my care plan since then. Next month, five years NED!
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Thanks so much everyone for your helpful and rapid responses. The MRI is today, so I should have more info soon. How do I go about asking for a second opinion on the slides? And do I choose where they go or do they? One more question: I am allergic to IVP dye (anaphylactic reaction). Is the contrast used today (Gadolinium) the same, or have they changed what they use?
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Hi alljust a question about the wording on CT scans
'no evidence of significant abnormality'
is that the same as 'normal'.....
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wobbly.....pardon me if I laugh! That colorful description of the word "normal" is the most gobbledygook phrase I have ever seen! That radiologist deserves an award!
Seriously, I would welcome standardization of medical jargon.
Congrats! You are normal!
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VR- your my heroine....you are always there... ( not that I will always expect that from you!)but....if you are ever in the uk do pop in for tea n cakes x
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