Mucinous Carcinoma of the breast
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Wow beatup, who else could have seen BC as a bit of good luck?! I have a lot to learn about survival tactics from you
I did escape chemo but I got to do rads, only because my lump was quite big and close on the chest wall; with yours coming at under 2cm you may well get the lucky break you deserve! Praying it will be an easier ride for you than MS and the ostomy.And welcome back treegirl, I'm so glad your surgery had good outcome. Here's prayers for a swift recovery and that you get on top of the pain soon - or don't let it get on top of you at all if you can help, take the tablets a bit before you think you really need them, apparently you use less that way and you suffer less too.
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Holiday!!??? What holiday!!! I was evacuated because of the hurricane and my neighborhood just got it's electricity back!!!! On top of that...I had a D&C for endometrial thickening and a polyp. I have a history of polyps and when I had my baseline transvaginal ultrasound before beginning the Tamoxifen, I already had another polyp. I was in a holding stage until I became symptomatic. So, a few weeks ago I became symptomatic and voila...D&C... Again! Going to give Tamoxifen another 6 months and then we shall see...
Sorry to see more voyagers have joined a journey none of us wants to be on.
Treegirl... Glad to hear your surgery went well and you are pleased with your pathology results.
Beatup... You bring up something interesting on this thread. It isn't often that sisters mention other chronic illnesses which I think are more common than we imagine. My husband has heart issues AND muscular dystrophy. I have had several life threatening illnesses BEFORE I got breast cancer and i guess the DH and I have just learned to roll with the punches. What choice do we have? Not much. I want to add, my mother-inlay also had MS! She lived to be 82! It hit her like a steam roller in her early 50's! It was a blessed miracle for her to live so long! None of us know what the future holds in store for us... We can only hope and pray that our days be many and joyful with only the fewest moments of tears.
Thoughts and prayers to all the sisters.0 -
Welcome back, we missed you. Sorry I didn't realise "that bitch Irene" was headed your way. Hope things get back to normal soon.
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Voracious - hope that Irene didn't cause too much damage. I live in southern NJ and we have been dealing with flooded roads, but no damage to our property thankfully.
I had my chemo today without incident, hopefully it won't bring me down too much over the next few days - only 1 left to go! I did found out it takes 7 weeks for my hair to grow back. My last chemo was 7/15, but I had to take a break and during that time I had a mastectomy and my hair started to show itself over the last couple of days. Considering I lost it two weeks after my first treatment I don't think it is here to stay. Good news is that I got fitted for my prosthesis today, so feel alittle more normal.
Thank you for all of the kind welcomes!
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Well Voracious Reader I am so sorry to have thought you must be on holiday instead of that you were dealing with Irene. Although we are out of its way in Sth Australia we did get regular updates on all you were dealing with.No-one can accuse life of being boring your end of the world.
Thanks for the updates from everyone else posting, that keeps my prayers more specific for you. You are a great lot of courageous women. Sara Aust have you got your latest update?? I had in mind it was due about now. Many blessings, am off to bed so musn't write too much I get too wandery this time of the night. TricianneTricianneAust Diagnosis: 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy,Tamoxifen,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy
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Well, I'm going to have a double mastectomy done this Thursday. What a hard decsion that was! But because of all my other health issues it's best if I do everthing to avoid radiation and chemo. I have no idea how I will be able to deal with looking down my shirt to.... nothing! It's a horrible thought! Help!
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Beatup - I had a right side mastectomy on 8/15 and it has not been as hard as I thought. I originally was going to have bilateral with reconstruction at the same time. The chemo was taking its toll on me so it was decided to do right side immediately, but wait on rest of the surgery. They have a postsurgery camosole with "pillows" to show some shape. I have decided that for me personally, I will either wear that or a bra with prothesis at all times until I have reconstructive surgery. I think it would be easier to look uniform if they did both sides at once, because right now I am trying to match my natural breast which can be difficult. I got fitted for my prosthesis and I think that it is very similar to my natural breast. So the only time that I look at the right side with nothing there is in the shower, but the pathology reports showed that they got clear margins so that is the important thing.
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Hi Beatup, that was an exceptionally hard decision but in the light of the health problems that you have its probably the best decision you can make in a difficult situation. I will cover you & your medical team with lots of prayers for the best outcome they can get for you. One thing when you look down at "nothing" is to change the focus to NO CANCER. My stepmother 12 years ago had a double mastectomy and that refocusing helped her enormously, she now actually enjoys being 32 after she was a size 44dd (I don't know the American sizes) and says there are a lot of positives being nil breasted, most of all that she has had no cancer reoccurence.However it will take some readjustment if you remain nil breasted and the other options of reconctruction or prosthesis are not your choice. Many blessing, am feeling for you what you are experiencing.
Take care. TricianneTricianneAust Diagnosis: 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy,Tamoxifen,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy
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No, I can't have reconstruction because of all my immune system disorders. At first I thought I would enjoy having new set of pert breasts but my oncologist burst that bubble. I don't know where to go from this point.
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Hi Beatup, is there any chance of getting "pert new breasts" via two prosthetic breasts? They won't feel the same but you may prefer them if you can't cope with the flat cheasted look. Meanwhile you are being covered with lots of prayers from this end of the world, via my daily updates. Bless you and those in your support team. Hi to everyone else am keeping your latest issues in my prayers too.
Lots of love and care
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hi dear ladys
how are you all?
we still waiting for my mom's result of womb...so nothing hapened yet...she doesn't take any tritment yet....i'm so worry...:( everything takes so much time...:-(
all most 3 month after the surgery and no treatment...
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(((Beatup))) adding more prayers for you and your team.
Pedicure, bright toenail-varnish and peep-toe sandals to help to take your gaze past your abdomen (that will seem to stick out a bit with no boobs in the way, even on the slimmest figure) Celebrate seeing your lovely toes
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Thanks for everyone's help and kind thoughts. I think mostly I will go flat chested but does anyone have experince with self adhesive boobs for those times you want to fill out a top? Do they really stay in place? Are they uncomfortable, hot, or just plain weird?
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Hello again.....I was diagnosed with mixed mucinous carcinoma in july. I am 45. my mother had breast cancer at 60 and my aunt, her sister, in her mid 50's. I tested neg for the brac genes. I am ER+, PR+, HER2-, no nodes, my ki67 was 13%, stage 1, grade 2, my tumor was .9 and I am DES exposed. I have had a lumpectomy and a second surgery to get clean margins. DCIS was found in the margins. I was told by my breast surgeon that no one on the tumor board recommended the oncotype dx test which was a disappointment to me. I begged for an MRI after my aunt was diagnosed and they finally agreed to do one this year 4 months after my annual mammogram and ultrasound found nothing so I guess you could say I am a little skeptical about Dr's thinking they know everything before doing tests. My breast surgeon said I would not do chemo. MC was not an aggresive cancer and we caught it early so radiation and tamoxifen were the treatments for me. My medical oncologist has changed his mind and is now doing the oncotypedx test as he is unsure about the DES factor, the grade of my tumor and my age being on the young side. Anyone here DES exposed? Is this really a factor on wheter I would need chemo? I know there is not much research out there and I appreciate my oncologist wanting to find out all he can. Can a grade 2 dx of a <1cm tumor really tip the scale on chemo? I am expecting the results any day now. I guess I just need to sit tight and wait for the results. sigh........
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Hi, I am DES exposed as well. DES Daughters have 2 1/2 times more chance of breast cancer than the average population. DES is a synthetic estrogen so basically I was swimming in it in vitro for the first three months of my life. I can't answer your questions about when chemo is necessary but you can certainly ask for a second opinion from another doctor. I do have a friend who had a tumor less than 1 cm and she didn't have chemo or radiation. I guess it also depends on the grade of the tumor. There is information out there regarding DES. Check DES Action, the CDC, and Facebook DES. There is a historic DES lawsuit going on right now in Boston, MA concerning DES Daughters and the link between DES and breast cancer. There are specific exams you should have. I urge you to check out the above websites. Please feel free to PM me or if you prefer I can talk to you on this thread. If your mom is still alive and able to prove that you were DES exposed or if she's not and your physicians can vouch for the fact that you are DES exposed, you may want to contact Aaron Levine, attorney in Washington, DC. He is the attorney representing 53 women at the hearing I mentioned, above.
tuckertwo
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2basco...I'm not informed about the DES risk factor. Perhaps an oncology ob/gyn physician can guide you more on that topic. Regarding the prognositics of the signature of the characteristics of your tumor, I ran the "numbers" through cancermath.net's calculator, and found that your grade 2 tumor which is half the size of my grade 1 tumor, created almost the same excellent prognosis statistics. You can run the numbers and see for yourself!
Regarding the OncotypeDX test, this year for the first time the NCCN included the Oncotype DX test for most women who have ER+ and HER2- tumors. Unfortunately, they didn't make the recommendation for Mucinous and Tubular tumors. That doesn't mean that doctors aren't prescribing the test. I think they haven't made the strong recommendation for the test because most mucinous breast cancers are considered "favorable" AND more importantly, the test hasn't been validated as strongly for our type of breast cancer as it has for traditional IDC and ILC.
I am happy to read that you have been a very strong advocate for yourself and are receiving these important tests to help you make an informed therapy decision. Regarding the MRI, just want you to know, my mammogram missed my tumor and the sonogram picked it up. The MRI found a "drop" of DCIS too. Mucinous tumors look very similar to cysts and are often difficult to distinguish.
Good luck and thoughts and prayers to you.
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Thank you both for your responses. Very helpful to me. I called today to find out if the results had been sent from lab. My score was 18. I guess I think that's good? The nurse would only tell me the score and that it was low to intermediate risk. She said something about the recurrence percentage being 12 percent. I meet with my oncologist to discuss results and what the score means on Tuesday.
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hello
how are you all? we are fine...thanks God get a resoult from the biopsiya...it's good...:-) now we wait for the prescription for the peal...everything takes a lot of time...
My friends mom also was diagnostic with mucinous carcinoma ....i send her to find this web...she was so greatefull to get all this information...:-) it's really helps to understand beter the situation...
she had a question: are some one here one that this kind of cencer send metastasis to the brain? well i told my freind that i didn't read here something like that but i pronised her to ask you...
thanks a lot
:-)
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Miki... Glad to hear that your mom's reports are good. Hope she responds well to the next phase. Sounds like you are doing better too! Regarding your friend's question... I have never read ANYTHING that says where mucinous bc is more likely to spread to if it were to spread. However, my doctor did tell me that he thought if it were to spread it was more likely to spread to the bones and that is why he recommended Zometa. Have your mom discuss Zometa with her doctor. While the evidence is still inconclusive, many doctors believe it protects the bones from invasion.
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voraciousreader....you are wise thankyou for all your posts, I have been through alot of them since my initial dx and coming to this website and I have read your posts several times. You have answered questions I did not need to ask. My surgical path report from 8/2/11 said IDC (mucinous type) which I am told is rare for my age (49) but very good prognosis. My other dx is much the same as yours. Just found out yesterday my Oncotype was 12 so no Chemo Yay! I am also Diabetic so had to go back 8/24 for a re-vison on the lymph node surg site and have seroma drained and clot removed. Now almost a 2 months later the draining is finally stopped and I am healing from the inside out. I still have a open incision but am told my diabetes makes this slow to heal. My treatment will be a 7 wk radiation plan to begin as soon as my incision is healed, followed by 5 yrs tamoxifin. I am sure I will be visiting this site and reading your posts for many months to come! I have added radiation therapy post to my favorites!
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Cherri... I am sorry to hear about your recent diagnosis. I know how tricky the healing can be especially if you have an underlying problem. Years ago I had a staph infection at a surgery site and it took months to heal, as well, from the inside out. Years later, I had plastic surgery to fix it after my young daughter asked me why I had two belly buttons! I hope after this, your recuperation will be uneventful! Good luck and thoughts and prayers to you!
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HI Voraciousreader...
thank you for you quick answer...you are the best :-) the gynecologist wiil give us the letter with recommendation for Zometa becouse that my mom's womb produce polyps...so i will send this letter to her oncologist and will see what she will tell us...everything takes a lot of time...:-(
but i feel much better...my hope came back to me...
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Voracious~ Thank you for your reply to my post. I was wondering have you had treatments with Tomoxafin and if so did you have any side effects? I am kind of worried that one of the side effects is blood clots or developing uterine cancer. I just want to get better and I know this does not mean it will happen but it scares me. Also they said Radiation could cause damage to my cardio system since my BC is on the left side. With my diabetes I am already a high risk for cardiac problems....Man does the worry EVER end? I never knew that this BC would effect my life now and in the future so much. I have never been a worrier but now that is all I do, seems like I have lost the passion of just waking up to see what the new day will bring. Now it is almost a dread.
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Miki... I get uterine polyps too. Usually, before beginning endocrine therapy(tamoxifen or an AI) the gynecologist will do a baseline sonogram of the uterus. Make sure the doctor requests it. Also have them explain Zometa to your mom and see if she would be a candidate for Zometa. I am so thrilled to hear that you are hopeful! I will continue to keep you and your family in my thoughts and prayers. A special happy new year to you and your beloved family.
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Cherri...you are presently in active treatment and during this period, it is an emotionally and physically stressful time. When I was first diagnosed and had to visit the oncologist, just seeing the word "oncology" freaked me out! Sometime over these last few months, the word no longer affects me. Bottom line is that over time you will feel better. Somehow, somewhere, sometime, your inner strength will return. Until then, you might wish to join a support group or even talk with the other sisters here. Regarding the Tamoxifen, I feel fine. I had polyps and some uterine thickening, but my doctors assure me that I don't need to worry. So, you know what? I don't! Now regarding the heart, I DO worry, A LOT! And that's why I am under the care of a great internist. Heart disease is rampant in my family. So I do everything my doctor tells me to do and remain hopeful that my treatment doesn't kill me. I try not to read too much into my disease. Actually, I probably have read everything about breast cancer and the various therapies numerous times. But I now don't make myself upset over the "what if's".... Just like with the word "oncology".... It doesn't get to my core anymore. I trust the doctors who are treating me and I am resigned to doing whatever it is that they think I should be doing and let them do the worrying... Instead of me.
I promise that one day, hopefully sooner than later, you will reach your new normal and begin to enjoy life once again. Thoughts and many prayers to you!0 -
Voracious~
I understand... I do freak alot more then ever before, being dx with BC has made me an emotional wreck and I can only hope as you have said that eventually it will all level out and I will get back to my normal eventually. I have read so much bad stuff about tamoxifin from the ladies on here and at Y-me. It makes me almost not want to even start it. I have always been a follower and did whatever I was told to do. But I find as I get older and wiser I learn that not everything is as it seems or is said to be. So I find myself more & more doubtful and less likely to just follow the herd so to speak. Question; on your diagnosis you say Pure Mucinous BC. Was that on your path report or did your Oncologist tell you? The reason I ask is on both my pre-op needle and post-op path report it said Infiltrating Ductal Carcinoma Mucinous Colloid type. I asked my Surgeon pre-op about it and she said she wasnt positive it was mucinous since this type was rare. She said she would wait for the final path report which of course came back with the same dx. So then I asked my Oncologist the same question (he had the post-op path repot) and he stated no you have Infiltrating Ductal Carcinoma. So then I asked his PA and she said yes your path says it is mucinous type but that doesnt change the treatment plan. I know there is a difference between Pure and mixed mucinous depending on how much of the cancer is floating in the gel. I am sure you have researched and like myself there is not alot of info on the mucinous type. Can you give me any advice? I have read through your posts it can spread to the bone and taking Vit D is good. How much do you take? Again thank you so much for your time
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Cherri...First off, regarding the Tamoxifen, beware of where you acquire your information because it may be skewed. Over and over again I read about women who have the most awful side effects from Tamoxifen. Where are the women who have no side effects? They're probably not here reporting on how well they feel. Perhaps you can try it for a few months and see how you feel? Nothing is written in stone. Everyone differs, so you can't gauge how you will respond to Tamoxifen if you haven't tried it.
Regarding your pathology report. Mucinous breast cancer is a subtype of Infiltrating Ductal Carcinoma. The majority of women have Infiltrating Ductal Carcinoma, NOS. The NOS means that is "Not Otherwise Specified." Mucinous, as you know is a very specific type of IDC. Your doctor is correct when he says you have IDC. Because Mucinous bc IS a TYPE of IDC. And he is correct when he says it is treated the same as IDC. If you look at the NCCN Breast Cancer treatment guidelines, you will see, however, that "Tubular and Mucinous" breast cancers are treated just SLIGHTLY different from traditional IDC IF they have "favorable" characteristics. So or example, if you have a traditional IDC that is ER/PR +, HERneu -, you would probably be recommended chemotherapy with a smaller tumor than if you were diagnosed with a larger "tubular or mucinous" breast cancer.
Now regarding whether or not you have "pure" or "mixed" mucinous breast cancer. My pathology report did NOT say "pure." But I was told by two oncologists that it was "pure." A sister in England took 6 months to nail down which one she had! It turned out, that if it is "pure" it will say EXACTLY what yours said. When it is "mixed" it will say, "Mixed." Furthermore, there are some women who post that they have IDC with mucinous features. Basically, what that means is that their tumor is MOSTLY IDC-NOS...with some mucinous cells in it.
So, I would go back to your MO and ask him to clarify with the pathologist which type of IDC mucinous breast cancer that you have. If you haven't already had the Oncotype DX test, you might request it because it can give you more information about your tumor. Most pure mucinous breast cancers have low Oncotype DX scores and the benefit of Tamoxifen in ABSOLUTE terms is minimal. Nonetheless, it is a personal decision as to how much risk you want to take. I will give you an example. Tamoxifen reduces your chances of recurrence by almost 50%. But if your chance of getting a recurrence is quite small, say 5 or 10%, then the ABSOLUTE benefit that Tamoxifen gives you might only be 2.5-5%. That's just an example. My oncotype DX score of 15 said that I had a 10% chance of recurrence with Tamoxifen. My MO thought that figure was too high. He thought my chances of recurrence were in the 7% range with Tamoxifen. The Oncotype DX test hasn't been as strictly validated for mucinous breast cancer, so our "numbers" are still questionable. But adding the Lupron and Zometa, he thought it improved my numbers significantly...a whopping 2 or 3 more percentages. Basically, the treatment numbers are so small. But as long as I'm feeling well with no side effects, I stay the course.
They have me on Vit D3 too. I'm not convinced that the evidence is strong regarding BC and Vit D deficiency. But again, I take it because I don't have side effects. It's going to take A LOT of evidence to convince me that I need it. We shall see.
Hopefully, I haven't confused you or any of our sisters or future sisters who join our journey. Knowledge is power and the more you read the more you can be in control and make informed decisions. Happy Reading!
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Actually, on my primary path report, after lumpectomy, it said: Histological Type of Invasive Carcinoma: Invasive Mucinous Carcinoma. I went to another surgeon for surgery #2 and when pathologist #2 reviewed slides, she felt it did not meet the threshold for pure. (Didn't give me a %.) I spoke with path #1 on the phone, he reviewed slides and stood by his initial dx. Path #1 has 34 years of experience so one would think his dx would be accurate. So, it can be really difficult to nail down. I am assuming mine must be mixed otherwise there would have been no question.
Edit spelling errors...I'm sick with a cold...what can you expect?!!
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PLJ... You bring up an excellent point. Since mucinous bc is rare. Pathologists don't see enough of them to uniformly classify them. Seems that each pathologist can sometimes be arbitrary when classifying it. Despite the Oncotype DX test not being strictly validated for our type, it does give a "feel" for how favorable or unfavorable it is. The average score for a mucinous bc is 15.2. So despite you having a grade 2 mucinous bc, your 16 Oncotype score gives you a favorable long term prognosis. Similarly, another hallmark for a favorable prognosis with mucinous bc is lack of node involvement. More women with " mixed" have node involvement than those who have "pure." So despite being a grade 2 and"mixed" I think you have very favorable prognostics. Perhaps one day, with additional genetic testing, there will no longer be a need to nail down the difference between the two.
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Thanks, VR. I know it looks favourable and appreciate you taking the time to point that out. However, it would have been nice if they had *both* felt it was pure. C'est la vie!
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