Mucinous Carcinoma of the breast
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since you are having a mastectomy, I wouldn't be concerned about the DCIS. Many of us mucinous sisters have had an additional component of DCIS. You will be managed based on the most aggressive part of your tumor, which is the invasive mucinous bc, which you say is grade 1. Although this is only preliminary, once you have your final pathology report, pending surgery, you will have enough info to decide exactly what your treatment should be. The good news is you had the Mammaprint and other genetic testing that tells you, you are dealing with an indolent tumor.
The reason why I can reply quickly is because I get email notifications of this thread. If I'm in a position to reply, I do!
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Just want to let our mucinous sisters know that Cider8 and I had the pleasure of meeting today for breakfast, which after looking at my watch, almost turned into lunch! The time flew by!
,💞💞💞💞💞
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Glad I have found this forum. What a whirlwind, found lump on Oct 5th and await all pathology results in the morning. Surgery was Oct 21st , has anyone had a hematoma following lumpectomy?
I have been told that I have IDC sub type mucinous, nothing more than that! This place is a mine of information
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Welcome Seaomage. I'm sorry that you had to join the club, but glad that you found us. You will probably find out whether you are pure or mixed mucinous along with ER/PR and HER type. I know it's hard waiting, but these are the things that will dictate much of your treatment. I'm sure some others will be along briefly. Hoping the best for your results. GypsyJo
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sorry you are joining us! I had a seroma...hematoma? Though I didn't have one, they are common....Try finding out the biology and then register at the NCCN website and read the area specifically devoted to mucinous and tubular BC. Also learn about the Oncotype DX test.
Good luck!
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How cool that Voracious and Cider8 got to meet in person! If I'm ever any of yours ways, I'd love to visit. We are a little anonymous here, so mostly don't know where each of you live!
I'm back researching the forums; my stepsister has invasive lobular cancer, surgery yesterday, nodes are affected - now waiting for pathology and recommendations. Is it just me or does it sometimes it just feels like cancer is this century's plague?
For the newbies on our thread - you have come to the right place - you'll find so many resources and much support here. Wishing you well.0 -
Feeling! I'm sorry to learn that your stepsister has been diagnosed! I'm certain that you will be there for her, every step of the way.
Regarding cancer being a plague....I think once we are diagnosed, we suffer cancer mania for the rest of our lives! Two friends of my beloved neighbor/friend are going through cancer treatment right now. I find it difficult to hear about what these women are going through. Furthermore, since last week, I've been on the merry-go-round because I was diagnosed with a rather large thyroid nodule. I've been assured it looks friendly. Nevertheless, because of its size, and my cancer history, I'm going to require some kind of treatment once the biopsy results are known! Translation????? I am going to be an endocrinology patient for the rest of my life! Okay....so I've resigned myself to the fact that if I live a long life, I'm going to have a parade of doctors following me on what I hope will be a long journey!
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I am dissappointed, will be having chemo followed by radiotherapy. This means giving up work for a few months. Still cannot understand how quickly this has happened and how it got to the lymph node so fast. I also feel like a complete phoney, I look the same and feel good. Life has just got turned on its head.
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sea....some mucinous sisters have or had chemo and ultimately do well. We are here for you...I send you my support and most gentle hugs....
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voraciousreader--- Shortly after my diagnosis and subsequent UMX, I saw an oncologist friend of my dad's when I was home for Christmas. I was mentioning that I see more of my docs than I do of my husband and he made a comment that will always stick with me. He said "Keep this in mind...if you take yourself and compare you to a group of your peers (i.e. age, sex, health etc) you will very likely outlive all of them because from here on out, you will be getting such outstanding medical care from all these docs as compared to your friends." It really helped me to deal with the surgeries, recon and subsequent "cancer phobia" that I was dealing with. Now I joke that I am going to be really healthy, but really lonely in my old age!!
And my way of dealing with endless doc appts was that every time I went to see one, I then went shopping for myself. Whether is was buying just a tshirt or a cookie or whatever else I considered to be a treat at that time. Now I look forward to seeing my docs! I'm almost 3 years out so now just see about 4 of them once a year, but I scatter them throughout the year (per my BS request so that some doc is always laying their hands on my every 3 months or so) and I always treat myself afterwards. Now I love going to them!!
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lala..ahhhh...retail therapy!👍👍👍💞💞💞💞
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Hey I like that, I'm going to start that as well!
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Seaomage, mine worked the same way this year...I felt a lump, found out it was cancer after a mammogram, ultrasound, and biopsy. It all went so fast. I have felt fine all along. Even my surgery seemed easy. It's actually hard when you seem fine but still have all these worries and emotions swirling around inside. I've even felt like "ok, when is this life-changing feeling going to come now that I have cancer?" I have found that activity helps, even if it's just cleaning the house. And find someone who will listen to you. Even if you have to say "Will you just listen to me for a few minutes while I vent?" Of course, keep coming here. And make sure you're comfortable with your doctors. It makes a HUGE difference having a doctor you can talk to and who will answer all your questions. Thinking of you. ((hugs))
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Hello mucinous sisters,
I've been off this site for some time, just living life, and slowly letting cancer be part of my history and not my daily companion. I'll be three years out post diagnosis in just a few weeks, and life is definitely brighter from this vantage point.
I'm stopping back in because I'm due for my annual mammo next week (I've been on alternating mammo & breast mri every six months). I'm questioning whether to keep the appointment. Three's obviously been a lot in the news about the change in screening recommendations. I'm aware that this applies to the general population, not those with prior breast cancer. But, it's got me questioning it, too. I had my breast mri just six months ago, and it was clean, and it's obviously a much more sensitive test. I'll have another breast mri six months from now as part of my regular follow up. So, my question: is the extra radiation of a mammo (which never diagnosed my cancer in the first place) really necessary? I'm questioning if the potential harm outweighs the potential benefit. I don't want to stir up the pot here (and I know we're all in different circumstances), but I don't really know where to raise this conversation, and I'd really appreciate any thoughts, if you're so inclined. I should disclose that I feel that for my particular cancer specifics, I feel I was overtreated (based on NCCN guidelines) and I did experience a life threatening side effect. I'm questioning things a bit more deeply since then.
Anyway, as I said, life has moved on from those earlier dark days, in mostly very wonderful ways. Although every six months at screening time, I can still feel pretty shaken. I'm wondering if the mammo is really worth it right now given my clean mri results.....
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Destina....I often wonder about over treatment and over screening as well. My mammogram also missed my tumor. Ultrasound found it while the MRI found the drop of DCIS. Since I am a few more years out from you, I can say with a badge of honor and courage, that I am FINALLY back to annual mammogram and ultrasound screening. I think all of us are different and there is no right or wrong decision. I hope your team will take the time and come up with a screening plan that fits your profile and you personally.
Regarding over treatment.....Yesterday, I had my 6 month check up with my oncologist. We spoke briefly about the TailorX results which was a good starting point to a discussion about over treatment. The fear monger that he is said, "We won't know if we over treated you until you die from something else.". Well that kind of shot down that discussion. Then we got around to discussing side effects. So, when I finished whining, he kind of said that he thought I was doing very well and congratulated me on approaching 6 years NED.....
Sooooo.....I think we must not look in the rear view mirror, but, instead, look straight ahead. I think we do all need a map of ahead. Remember, we all come to this disease from many different roads, so our journeys will never be the same. Glad that your journey is going well. That is always nice to hear!
Please keep in touch and let us know your map!
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"I think we must not look in the rear view mirror, but, instead, look straight ahead".. ..These are words I needed today, thank you!!
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I met with my MO yesterday, 6 months after starting Anastrazole. We had an interesting conversation about over treatment. I am contemplating stopping Anastrazole or trying another AI. We reviewed the stats for me for the next 15 years. There is a 2% chance I will die from my cancer in the next 15 years. There is a 22% chance that I will die of something else. There is a 1% chance that my life was saved by doing the 5 years of AI. As I was using my illustration from the mortality calculator and validating with him, I was pointing out the potential gain of the approx 1% acknowledging that its either 0% or 100% for the individual. He emphasized to me that medicine is in effect, overtreating a minimum 75% of the women in my illustration and very well most of the 22% in addition that died of other things. He said its unfortunate that they don't yet have the knowledge to know who would benefit and who wouldn't.
I also asked about most frequent recurrence of mucinous cancer, asking 1-2yrs, 5 yrs, or longer. The said the most frequent to remember is it will not recur. He did say most would happen beyond the 5 years if at all.
I think part of it depends on the physician, the patient and the rapport between them. I will be taking a break from Anastrazole to do some international traveling and don't want to be impaired. I was proposing stopping about a month before my trip. He told me to stop one month before and set up an appointment with him upon my return to look at options.
I'm currently in a Clinical trial on Acupuncture for relief of AI joint pain and stiffness. Unfortunately I landed at random in the control group. I am committed to sticking anastrazole out to the end of January to remain in the study. At that point I will receive 10 acupuncture treatments to see if I get relief. This should happen prior to my trip. (Additional Anastrazole with Acupuncture, trying Aromasin or trying Tamoxifen). Upon my return, we will see how I am feeling off AIs and what happened with acupuncture. He wants to see if we can make anti-hormonals work, but don't I shouldn't feel as if I must take them at all costs.
My next mammogram will be a 3D next January, one year post the one that started my cancer journey. The spot that was biopsied was tracked for 2.5 years by mammogram. It didn't even show up on the ultrasound. Ironically enough, the ultrasound found another benign lump that didn't show on the mammogram. I had to have a second biopsy, because the first one done was using ultrasound and was not the lump they had been tracking with the mammogram. Thank heaven for the biopsy marker that showed on the follow up mammogram that they did not biopsy the area of suspicion. I definitely demonstrated to me that their tools have a lot to be desired but they try to put processes in place to deal with it.
I also had IORT instead of the more traditional radiation and chose my center based partially on the potential of qualifying for it.
The breast cancer team all pretty much have this same approach and it is at a teaching hospital and one of the NCI centers. I really do think each case, patient, doctor adds a variable. We each have to come to terms with our situations and risks. Prior to the MO appt, my thought was the long term result that would upset me most was if I suffered through the next 5 prime years of my life on Anastrazole feeling 94 and still came down with a recurrence. If I did recur after stopping anastrazole, its a 67%+ chance that it wouldn't have made a difference anyway.
I will be trying other options before giving up AIs totally, but with my diagnosis I have come up with my bottom line. Wish me luck. I hope you all find the approach that works best for you. Thanks for listening and discussing the topic of over treatment. I sometimes fear the approach may not be enough, but feel comfortable with the approach.
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golden...carp diem! 💞💞💞💞
Gyp....Thank you for sharing your journey...sounds bumpy.... I've discussed the percentages with my oncologist....the fear monger would want me, had I been his wife, to TRY a treatment even if the benefit was a single percentage gain. Yep! He is some oncologist! That said, my side effects are quite minimal. So, I'm invested in the hope that that 1% benefit gives me that 100% chance of never having a breast cancer recurrence!
That said, I'm having a thyroid byopsy next week for a 2cm nodule. Life is sooo much fun. What else can I say?!😱😱😱😱💞💞💞💞💞
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Voracious, So sorry that you are facing another biopsy. I guess we all have our bumps. Let us know how things go.
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gyp....I'm not worrying! I'm told the nodule appears "friendly." Stay tuned....
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Crossing my fingers for that "friendly" nodule to be really "friendly". It does seem to be a bit of an oxymoron. I remember when the doctor called to tell me I had cancer, she said it was mucinous and that was a "good cancer". While I understand what she meant, it didn't seem to me at the time that anything was good about cancer.
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Golden....thanks for keeping your fingers crossed for me! 😘
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Thanks for sharing your thoughts and experiences. It is a relief to know that I'm not the only one questioning all of this! I'm still not entirely sure what I'll do about next week's mammo. Maybe have it, and then have a longer discussion at my follow up? I'm not quite sure if I skipped it, if the MRI would be covered in May, since I wasn't following 'the plan'. Not entirely sure who to ask about that...member benefits maybe.
VR, you said that after 6 years you were back to annual mammos & ultrasounds. Was it every six months prior? Or did you forego some? I appreciated your thoughts about my team putting together a personal plan for me. I realized that I don't really feel that I have much of a team to speak of. Hmmm. Good luck with your biopsy next week. I'll definitely be thinking of you.
Gypsyjo, thanks much for sharing your experience, your questions, all of it. It would be delightful if the path weren't so foggy, filled with lots of statistics that aren't terribly meaningful for any individual. My side effects with tamoxifen landed me in the hospital with two large bi-lateral pulmonary embolisms. I took tamoxifen because my MO was very convincing that it was the right thing to do (she actually said it would be crazy not to), even though the NCCN guidelines at the time said benefit was minimal, and currently it's not even recommended for those with my specifics. I knew that at the time, but my fear drove me to follow the MO's strong advice. After the embolisms, she said, "that's it, we're done with meds." Of course, I believe she should've advised me differently to begin with. She's not a bad person, but her training was focused only on one path, and in my most fearful days, I was very afraid to go a different course. And yes, this was at an NCI designated comprehensive cancer center, too. I wish you well on your journey, and your decisions. Your international traveling sounds wonderful! I'm currently planning a trip 'across the pond' for next summer, and looking very forward to it.
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destina....every six months during the last six years, I had sonograms on both breasts. Likewise, for the first 3 years, I had mammograms every six months on both breasts. During my 4th year, I no longer had six month mammograms on my healthy breast, but continued six month mammograms on my diseased breast. At last Monday's visit, I was told I could move everything to annually. That said, I just had one MRI and that was done at the time of diagnosis.
Finally, since I am now menopausal, my breasts are no longer as dense as they once were AND I'm now having "better" mammograms....perhaps the technology is finally catching up to being able to see what needs to be seen.....
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voracious reader
I send you all good wishes
xx
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wobbly....😘. Thank you! So nice of you to keep me in your thoughts! Last week, I was thinking of you...Hope the journey is getting a little easier for you. As you can see from me...there are pebbles on the road....thankfully, I wear good (orthopedic) shoes so the peppbles don't hurt! I expect all to go well next week! The irony of all that is happening to me is that now that I no longer have gyn issues, nor do I have to make six month appointments for my breasts, instead if all goes well with the thyroid biopsy, I will need regular appointments to watch the damned nodule! I'm telling you and everyone else, there aren't enough days in the year to see doctors!!! 😱 Annoying? Yes!!!!
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I was recommended to this site for women dealing with invasive mucinous cancer. I got the call 11/4 informing me I had breast cancer. I still cannot believe it. I am so frightened. I didn't dream in a million years it would be me. After the biopsy they all say it is unlikely, 99% I didn't, but here I am. I have read information regarding this type and that is a rare kind but also read it can be "mixed" with another type? I also read it is supposed to be the slowest spreading. I go see the surgeon this afternoon. I hope that I will learn more today and don't have to wait until after surgery. As it appears this site is dedicated to ladies with this type of cancer I hope you can give me any insight you might have.
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kers....glad you found us! Once you learn a bit from your team and read this very long thread, we are here to help support you. In the meantime, it is important to make sure that the pathology report is correct because that will drive your treatment plan. Also register at the NCCN's website and specifically read the pages about tubular and mucinous BC.
Hang in there! After finding out you have BC and before you have a treatment plan in place is a very difficult and exhausting time. I remember. Sending you hugs and prayers.....
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Hi all my MC sisters. I have just had my 5 year checkup and been discharged as "all clear" from the Royal Adelaide Hospital Women's Health Centre so I want to celebrate & encourage you all. The rest of life has been super busy & breast cancer is such a small part of my journey now so I rarely get online to comment these days. I do appreciate the email updates I get so I can keep praying for those just diagnosed & those of you who do update your latest issues. So be assured voraciousreader that you are covered with prayers for your "friendly nodules" as are Kerskarina, Wobbly, Destina etc. I used the scripture 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." as that is certainly my experience in these last few years. The bowel cancer (14.5yrs ago) is still "all clear" & other than two hernias, one each side of the stoma is quite manageable.
I appreciated the recent comments about focusing on the forward view & not on the rear vision mirror to guide us on the journey ahead of us. In all my 50 years in social work & dealing with frequent crisis situations I have learnt that there is "no wisdom in hindsight" as in hindsight you have all the facts, figures, research, resources and all the time at your disposal to make what you may now consider to be a "beneficial decision" but you will still never know the actual outcome. I find people waste a lot of energy trying to "rethink & redo decisions" when we all actually try to make the best decision that we can at the time. I wish that I had found this site several months earlier as it would have helped my decision making and provided me really useful support but somehow my computer search only took me here about 4 months after diagnosis. Anyway do know you sisters are prayed for as the regular emails pop up in my inmail. Blessings Tricianne
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