Mucinous Carcinoma of the breast
Comments
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Stena...If you do decide to take the Tamoxifen, I would recommend a baseline transvaginal sonogram and an eye exam if you haven't already done so.
I've had issues with my uterus before taking the Tamoxifen and the Tamoxifen has probably made those issues worse. I am monitored very closely and have had a couple of D &C's. My team is confident that I can complete 5 years of Tamoxifen..I'm well over 2 years into taking it.
I justify taking it like Victoria! But rather than envisioning Pac Man... I see Sponge Bob!
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Love Sponge Bob!
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I am still picturing Sponge Bob plus Pac man they are great images. I think my imagery is Bob the Builder building me some strong bones (having osteporosis the Tamoxifan is supposed to strengthen them ) and hitting any spare cancer cells with a sledgehammer. Oh and I forgot to say my hair didn't thin down by even one hair, my hairdresser says I have such a full head of hair she wouldn't mind having a bit less to deal with. Blessings Tricianne
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Carpe Diem,
My mom was also diagnosed with stage 3 BC, mixed mucinous. It spread to her sternum in Nov 2011 and did very well on Taxoter and Zometa until she managed to get a lumectomy in Feb. She has con tinued with 4 more rounds of Taxoter and Zometa and will be going onto Femara since she is 95% ER+. I have been trying to research Mucinous Carcinoma since she was diagnosed and the most information I found was on this site, not much out there. I wish I could help with more information....
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Buburuzza... Thank you so much for posting regarding your mother. I hope she continues to do well. The info you posted here about your mom's active treatment is so valuable. By all means, if you or anyone else stumbles upon material that is noteworthy regarding mucinous BC, we all benefit from the information being posted here... So feel free to post whatever info you find. Because mucinous BC is so rare,I think in our situation, even our personal experiences with treatment, can lead to invaluable information for our sisters.
Thoughts and prayers to you and your mom!0 -
Hello all,
Huzzah! The thyroid biopsy came back okay. Phew. Currently on second round of chemo. The FISH test also came back + for HER2, so no matter how hard I tried I just couldn't make that go away. ER and PR are positive... only just learned tamoxifen will be recommended after the chemo and herceptin. Lordy lordy. Don't know how I didn't put two and two together on that one. So, that all puts me in the .1% of rare breast cancer. Saying this so you aren't glancing at my posts thinking what I'm going through is any kind of 'norm' for those with mucinous cancer.
Chemo is going 'okay'.. bald as a bat, but not overly unwell. I know that's my perspective because my daughter went through a brutal chemo, so my treatment seems so much easier in comparison.
"Feeling the magic" is my name here, because that is my focus.. noticing what feels good and magical as I heal. Wishing all of you magic and good, too.
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Feelingthemagic...I guess with being HER2 +...you really are quite special. I am happy to hear that thus far, you are managing well with your active treatment. You are in my thoughts and prayers.
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Thank you, Voracious for your thoughts and prayers!
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Just venting......Aarrggg...just want to get back to 'normal', whatever that was or at least a new 'normal'. Some days it feels as if I take two steps forward and about 10 backwards! I finally managed to open that bottle of Tamoxifen last Thursday evening after hearing from ya'll. Perhaps it was Spongebob because I do like me some Spongebob! So, I've had 3 doses of Tamoxifen and now I have this weird breast pain (I'm sure the two have nothing do to with each other)! Right above my incision, I have this pins/needle type pain. Now, I know that some of this is normal, the nerves getting back in the swing of things and all but this doesn't come and go. I can just softly rub my fingers over the area and it's sensitive. I also started my menstrual cycle Saturday but this isn't my normal breast tenderness. There's no redness, no news bumps but secretly, 'I'M FREAKING OUT!'. I'll be heading back over to the breast center tomorrow (which is only down the hall for me) and inquire. Whoever came up with 'One day at a time' didn't have breast cancer. For me, it's like 'One hour at a time' some days! If I even think there's something new developing in my boobies, I'm getting new ones!!
So, thanks for listening (reading).
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Stena3912 - Thinking of you as we move ahead, back, and ahead again together. Personally, I'm into the "five minutes at time" approach sometimes. I usually can figure out something to do (or not do!) for that long. The odd pains and sensations you describe can be so difficult to deal with. I remember after my BMX, if I moved my left elbow just a little too high (like to the arm of a chair), I'd get a stabbing pain (really stabbing like with a big sharp knife) in the middle of my left breast. It got so my sister and I would laugh about it as all I had to do was lift my arm a bit to make it happen! I finally got to move back into "real bras" this past week and had some more "pins and needles" pain the first day like some nerves were moving somewhere again. I hope today flies by for you and that you'll be at the breast center tomorrow before you know it.
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Thanks, Golden01. There's a fine line between being a hypochondriac for every little ache and pain vs being in 'tuned in' to one's body. I would just very much dislike to not address an ache or pain and later on, wish I had. So, off to the doc I'll go, high ho, high ho! :-)
Peace to us all!
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Well at least I can sit here and do "Getting back to normal" prayers for you all. It is such a hard stage when you need to analyze every ache, pain, twinge and anything "out of the ordinary" in the fear that it is something that you do need to take notice of and deal with. It seems to be the way of getting back some control but it does drive you loopy. So thinking of you all heaps and feeling for you. It has to get better and it does get easier along the pathway. Which is a bit trite to say when one is further along the journey. May all go well with all your followups etc. Blessings Tricianne
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Hi all, it has been a while since I have posted. I too have an unopened bottle on my dresser (mine are Aromasin). I asked to see a different oncologist recently. My first was missing details and followup promises, and I never felt that I was being treated as an individual (my pathology report had never been uploaded to my file for example, when I started asking her questions about it she admitted she had never seen it). The older and more experienced doctor I saw yesterday had some interesting perspectives about mucinous. Mine was pure but located with ADH or atypical ductal hyperplasia, I guess like early DCIS.
She explained that only 15% of patients experience side effects from Aromasin, and encouraged me to try it, as I may be one of the luckier 85% who have no side effects. She went on to explain that as a woman, I started with a 12% risk of contracting breast cancer, and now that I've had it, my risk (of recurrence) increases to about 20%. Mucinious is most likely to return in the breast area, as is DCIS. She also said that although mucinous does not usually metastisize, it can, but cannot be detected until a certain size. The Aromasin can also destroy any microscopic metastases throughout my body. Finally, she said if I cannot tolerate the aromasin, she thinks I will still be fine, as she considers an ER+ PR+ smallish mucinous tumor with no lymph node involvement like a stage 0 cancer.
Now this all sounds good to me, but I did not ask her to cite her sources! She knew I was looking to switch oncologists so was definitely putting her best foot forward. What do you all think? Does this jive with what you have been hearing? I guess I plan to proceed with the Aromasin after I return from my vacation in August and see how it goes.
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Treegirl...Thank you for posting your MO's perspective. Perspective is pretty much all the data we have with mucinous BC because there is limited concrete data. My MO's perspective seems to be the same. I must say, however, that the radidation oncologist and breast surgeon saw a culmination of many medical oncologists patients and they were even more knowledgeable with outcomes. While my MO also said that a recurrence was more likely to occur in the breast, he did also hedge a bit and also say, "But, you never know.". He also said I would probably do well even if I chose not to take Tamoxifen. The RO thought it was wise to take it to reduce the chance of getting another type of BC. That seemed like a good enough reason to try it.
Furthermore, both the RO and BS told me that between them they have treated more than 200 cases of pure mucinous BC in their decades long experience and they appeared to be way more confident than the MO that BC will NOT claim my life.
Going forward, with the use of genetic screening, I think we will, one day soon need to rely less on our doctors' perspectives. Hopefully soon, genetic testing will pinpoint which of us will need more aggressive care and exactly the type of care we need. It seems there are too many of our sisters here with distinctive mucinous breast cancers that do not fall easily into any catagory and have created a treatment dilemma. I remain hopeful that that day comes soon.0 -
Hi ladies
It's been a while, but I am back! I had a right mastectomy on 7/13/12 to clear the margin; Lab found another invasive tumor that nobody knew about... What??? My heart stopped when my BS told me so, but she continued to say that my oncologist said "no radiation needed." For a while, I had doubts about her decision. Ever since I found a lump in my breast i have been misdiagnosed (misguided?): mammogram and ultrasound showed it as "benign," and MRI after excisional biopsy showed there is no DCIS. Each and everytime, my BS had to bring bad news with the lab reports... So during my dark days when I had that evil drain tube in for almost three weeks, I kept thinking I should insist on radiation, or I should have had the other breast taken care of, etc... But gone are the dark days. I now think I should just move on and get back onto the normal life. I will worry about the bad news when I hear it. So far, I've started physical therapy to help with the cording and other issues, and I feel so much better.
Thank you for reading, and I hope you have a good day!
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Kurorin....Sorry to hear about your bad news, however it it such good news to hear that you are moving on. That is GREAT news! Hope your cording resolves soon!
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Hi Kurorin,
while it is a very distressing time for you, it is great that you are not predicting more bad new before it is given. My prayers for you will certainly be that the bad news stops and you begin to heal physically and emotionally. It is an exhausting time deal with all the breast cancer stuff, I am just waiting to hear that normal life is back functioning for you.
Hi Voraciousreader, Have just met my half brother Terry who we looked for, for over 55 years,(and found in January this year) he and his half brother Tim who is our newfound stepbrother, who we didn't know existed, travelled from interstate and are with us for four days. What an emotional roller coaster but very exciting too.
Blessings to you all, I still keep the prayers up but rarely have anything else to contribute these days, life is sort of normal.
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Ooopps pressed the wrong button.
Hi Kurorin,while it is a very distressing time for you, it is great that you are not predicting more bad new before it is given. My prayers for you will certainly be that the bad news stops and you begin to heal physically and emotionally. It is an exhausting time deal with all the breast cancer stuff, I am just waiting to hear that normal life is back functioning for you.
Hi Voraciousreader, Have just met my half brother Terry who we looked for, for over 55 years,(and found in January this year) he and his half brother Tim who is our newfound stepbrother, who we didn't know existed, travelled from interstate and are with us for four days. What an emotional roller coaster but very exciting too.
Blessings to you all, I still keep the prayers up but rarely have anything else to contribute these days, life is sort of normal.
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Tricianne... That's terrific news! I can appreciate how you feel being reunited with your family. My family had a reunion two years ago with family members who were lost for several generations as well. A miracle. Really.
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Voraciousreader, thanks for your reply. As we pieced together the complicate workings of how we eventually contacted each other it needed dozens of pieces of the jigsaw all interlocking at the right time. We have had a very healing time together. A miracle indeed.So I will keep praying for lots of other healing miracles particularly for some great health miracles for all my MC sisters. Extra blessings tonight for you all.
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Kurorin, a similar thing happened to me. I found my mucinous tumor lump, MRI found enough DCIS to need a mastectomy. It was only during surgery that a second tumor was found--but that one was IDC with one positive node. At first I was angry they didn't know about the IDC, as it was a treatment changer for me (chemo). Unfortunately, I've learned the screenings are just not even close to perfect: mammogram, ultrasound or MRI. Especially when dense breast tissue is involved, as was my case. Now that I'm almost a year out from chemo, I am grateful I went straight for bilateral mastectomy and did not have to deal with unclean margins or radiation. Cancer is so sneaky and I thank God I was able to find that mucinous lump. I was 39 and it probably would have been another year before I got a standard mammo, and that hidden tumor would have been bigger.
My decision for BMX was due to several suspicious spots on the non cancer side, warranting 3 biopsies and an MRI guided biopsy. The MRI guided biopsy and final pathology showed atypia lobular hyperplasia. Physical therapy was essential for me. Good luck with your healing.0 -
Hello,
V, thank you for the kind words. This thread feels like home
Tricianne, what a great story! Let's keep the miracles coming to us all~
cider8, it happened to you, too? I was 39, too, when I was diagnosed...
By the way, can I tell you ladies how I found out about my lump? (please skip if you don't have time~) I was watching a japanese tv show about amazing news around the world, and they did a story about a lady in England who got addicted to lettuce. Her addiction was so bad that she was eating 2~3 heads of lettuce a day, hiding in the corner of the kitchen. Finally her husband, who was a doctor of some kind, told her to get herself checked out, and that is when they found a tiny lump in her breast. The show didn't promote self-check or anything, as it was a purely entertaining program, but I did anyway, and that is how I found out. This lettuce addiction may be an old story around here, but I just wanted to share.
Have a good one, everybody!
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HELP WANTED
Hi, i have just decovered this site tonight. on the August 3 2012, I was told that i have mucinous Carcinoma of the right breast approx 3 cm. While still in shock i told the doctor that i was not having any treatment. I am now regreting this decision. also awaiting a result of the biopsy of the left breast with a similar looking tumor.
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When I learned I had mucinous breast cancer, my doctor said "You have gotten news that just stops your world". His words were so true for me and may be for you too. One thing I've learned is that doctors can change their minds about what is the best treatment recommended as they get more information and so can patients. Waiting for test results is so difficult. You've found a great spot for learning more about mucinous breast cancer. Sending you good thoughts to surround you.
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Ginia... You said it yourself... You are in shock now. Take a deep breath... Read this thread. As you understand more, you will be able to base your treatment decisions based on knowledge rather than emotion. Hang in there. Once you have a treatment protocol on place, you will begin to feel better. And one more thing...NO TREATMENT PROTOCOL IS WRITTEN IN STONE. Changes are made all the time. Good luck!
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Hi everyone. Ginia do be reassured that one of the normal reactions to the Shock of finding out you have cancer is to withdraw and not want any treatment, so your Doctors will be quite used to your reaction. Changing your mind about treatment with new information is your right.Don't pay yourself out for not making the decision that you now want to make, you will be ready when you have enough information. So we are here to support you through this. So too do I add your health to my daily prayer requests.
Thanks to Kurorin for your kind comments about eventually relocating my half brother after years of searching. You are so right about this site feeling like home! I keep having to revisit.
Great to hear from Golden01 and cider8, how are you both progressing?
Voraciousreader, you are so reliable about keeping this site going I give thanks for you every time I log in.
Blessings on you all Tricianne
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Thankyou all for your replys.
My story. - I live on a property in central queensland australia. nearest hospital 250km away.
Wednesday 01/08/2012 - Found a lump in the left breast and went to the doctor. doctor checked both breasts and agreed that the left breast needed to have a mamogram.
Thursday 02/08/2012 - went for mamogram and ultrasound and they decided that i needed a biopsy of both breasts. only did the right breast that day.
Friday 03/08/2012 - told i have mucinous carsonoma approx 3cm x 2.3cm x 1.5cm.within minutes of being told a breast care nurse is organising appointment with a surgeon.
Wednesday 08/08/2012 - Surgeon tells me i need a mastectomy of the right breast and a biopsy of the left (told that the biopsy was going to be done under sedation) booked in for surgery on the 23/08/2012.
Wednesday 15/08/2012 - had biopsy of the left breast.(no sedation)
Monday 20/08/2012 - panic set in - cancelled surgery and avioded telephone calls from doctor, breast care nurse and hospital.
Saturday 25/08/2012 - received results of left biopsy sclerosing adenosis.
BASICALLY, I'M HIDING OUT HOPING THAT IT WILL ALL GO AWAY.
I'm not really sure where to go from here.
Questions
Am i going to die if i do nothing?
I will look rediculous if i have a mastectomy of the right breast. I am a dd now. but if i have the lump removed how much of the breast will be left.
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Ginia... Do you have someone that can help you though the process of making treatment decisions? Right now is probably the most difficult time and without a doubt it is hard to think clearly. It is a very emotional time. Ask for help from a family member or ask your local cancer society for help. We are here for you. We have all gone through the process and found strength that none of us knew we had. Please don't feel as though you are weak. You will get through this. I promise.
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i have nnone my husband has left me as he cannot deal with all this and i have no family left only 2 teenage children. i don't want to tell any of my friends. should tell you i will be 40 next birthday.
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Ginia... I am so sorry to hear about your situation. May I ask you to please call your local cancer society and ask for help? They can offer you a buddy that can help you. They can also offer you counseling. All you need to do is make the call. I chose to only tell a handful of people. I respect that you don't want to tell friends or family about your situation. You can also call your doctor on Monday and explain that you need help. My doctor also had a support group.
I am not going to start with cliches that you need to be strong now for your children. You have every right to be upset. But you have a very TREATABLE type of breast cancer. Once you decide how you wish to be treated, the road to recovery will be easier. You are obviously very smart because you found your way here. This thread has lots of valuable information. With the knowledge you obtain by reading this thread, you will be able to make an informed decision. Please give yourself more credit. You CAN decide.0
