Mucinous Carcinoma of the breast
Comments
-
Cider, Skittle, Onlyoneleft, StayinHappy... Sorry to hear of your diagnoses. Glad you have found this thread.. where we all learn so much from each other, and especially from Voraciousreader. VR, I actually yelped "YES!" out loud when I read you will have the opportunity to meet with Britta Weigelt and Jorge Reis-Filho, because I know how valuable that is.. for all of us! Thank you again, VR.
Rarities... certainly something I'm noticing in this whole realm of cancers. My diagnosis of mucinous with HER2+ just makes our already 'rare' a little more rare. StayinHappy, I noted in your diagnosis in your signature that you are also HER2+? Perhaps we can keep in touch, as you are the first I've found with mucinous and her2, and sharing our treatment recommendations can keep us both informed. Also in the rare, my daughter was diagnosed with also a .1% rare form of ovarian cancer 2. 5 years ago. (Doing fabulous and 29 weeks pregnant!!!!) And just recently, my other daughter's mother-in-law (and good friend of mine) diagnosed with what initially seemed a small IDC.. turned out to be a 'continuous leaking' small IDC that has metasized in kidney and bones .. apparently the 'leaky' nature of it, also rare.Point of story: Yes, it is bizarre there being so much rare going on, but I've learned this: Self advocacy and the ability to research are so key in all of these journeys. What I've learned here, or linked from here to learn, have been key in decisions made about my treatments.
And an update: Had my last chemo last week, (chemo was a result of having HER2+ and started last June) currently in the 'wow, am I tired' stage.. and by end of next week, I get to be on the uphill ... getting energy back, hair back, brain back, and get active again. Hurray!! I do continue for another 11 treatments (every 3 weeks) of herceptin, and next week, apparently the onc wants to talk about what and whens of starting hormonal treatments. Which has me back doing research again so I'll be prepared with all the questions, and ha.. likely research!... when I see him.
Blessings to all of you!
0 -
Feeling--Congratulations on your fantastic milestone! Onward and upward--good for you! And congratulations on grandmotherhood-to-be! Happy news is healing! As for rare, I've looked for a "sister-in-this" who has also had the axillary reverse mapping and the radiofrequency ablation for pure mucinous... and have yet to find a soul. But, it's a big world of bc and not everyone posts... so maybe eventually.
Again, happy for you! Wishing you energy each day.
0 -
Just another not so quick update (alot has happened).
Finally got to see surgeon on 26/09/12. Decided on a Lumpectomy of the right breast on the 04/10/12. After a horrible night in hospital I was released 05/10/12 with drain intact. After surgery left breast DD and right breast a C cup. Not a problem I figure with padding this will look ok.
Then the trouble started. Had a drama with the drain on the Sunday 7/10/12 and local hospital in consultation with the base hospital decided to remove the drain (it was half out anyway) and to be reviewed at base hospital on wednesday.
Wednesday 10/10/12. Went to that appointment, some swelling very painful but all looks ok, pathology results not back yet. Referral for radiology. Right breast with swelling back to DD cup.
Thursday 11/10/12 swelling and pain increases, whole breast red and hot. I go to GP who tells me that after surgery you have to expect some swelling. Radiology appointment set for 22/10/12.
Not wanting to look like a winger I put up with the pain and swelling till 1.15am Sunday 14/10/12 when i go to the local hospital. Right breast now twice the size of the other one. Doctor uses scan and decides I have Senoma in the cavity left after the tumor was removed. Dr uses needle and drains 60 mls, then another 60mls, gives me antibotics script and sends me on my way. Pressure is relieved but it's Sunday no chemist open to get antibotics.
Monday 15/10/12 had enough and daughter drives me 250km to the base hospital. They use scan and drain 210mls from the breast. Put me in hospital on IV antibotics.
Tuesday 16/10/12 receive a call on my mobile from local hospital. The 120mls drained on sunday was sent to pathology and has grown a golden staff infection. I tell them I'm in the base hospital. They advise the base hospital. Panic ensues. I'm in surgical ward with 5 other patients.
Wednesday 17/10/12 still in hospital and enduring constant blood tests and small 60mls drainage for testing to find the right antibotic. Appointment to attend outpatients breast clinic to get pathology results cancelled. Apparently don't want an incubus of infection there.
Thursday 18/10/12 changes to antibotic. Hospital cancels Radiology appointment.
Friday 19/10/12 swelling up again and decision to scan again and drain the right breast. Another 270mls drained.
Monday 22/10/12 sent home from hospital with industrial strength antibotics and 3.5kgs lighter (not a bad thing).
Currently, swelling is continueing, right breast is very red and inflamed. Industrial strength antibotics make me sick. Breast cancer treatments all on hold until infection is under control.
Mine BC doesn't feel like a journey, more like the amazing race with the universe giving me U-turns. Appoligies for the spelling and grammer I have an infection (my excuse used to be I have Breast Cancer).
0 -
Sorry forgot to mention that it isn't fluid it's yellow/green pus that they are draining.
0 -
I'm so very sorry to hear about the seroma and infection. It's adding way too much insult to an already crappy injury.
0 -
Ginia.... I am so very sorry to hear about your painful recovery! I doubt it will help make you feel better sooner when I say I had a very frightful healing experience from another surgery that I once had. Many years ago I developed a serious staph infection from abdominal surgery. It ultimately had to be healed from the inside out--- slowly. It was a protracted and painful recovery that left my stomach deformed. Years later, when my young daughter asked me why I had TWO belly buttons, I finally agreed to plastic surgery to fix it. Just reading your story I am reminded of how frustrating and painful the experience was for me. I can only extend my thoughts and prayers to you that the rest of your recovery will happen more quickly and with less pain. Without a doubt, a serious infection is the last thing we all need to be thinking about. I wish for you brighter days ahead.
0 -
Hi Ginia, I've been watching for a post from you... wondering how you were doing. Sorry to hear you have an infection thrown into the mix. I had a seroma, without infection, and that alone was painful, so am really feeling for you. Giggled at this comment: Appoligies for the spelling and grammer I have an infection (my excuse used to be I have Breast Cancer).
My daughter had said to me early in this process, "Don't hesitate to 'pull the cancer card'.. it's a good one when there's something you don't want to do, or when you make a mistake, etc." She was 'shy' about doing that, but since decided we deserve to be able to use 'the cancer card' any way we like. ~smile~
Wishing you speedy healing and happy moments!0 -
Thanks everyone for your kind thoughts.
Typing the post the other day put a smile on my face. I know I have a sick sense of humour but I enjoyed sharing my pain with others. Currently still swollen, red and angry but i"m no Wimp and will endure untill my next appointment on the 7th November. Can't wait.
Love to all
0 -
Well Ginia you can certainly describe the events from 4/10/12 to 22/10/12 graphically. If its any consolation I surely felt the pain you were experiencing in just reading your account. Oh dear what a yukky experience Golden Staph is so nasty and a Dr who gives you a script for antibiotics on a Sunday when no-one was open to dispense it needs to think through their procedures. It wouldn't have speeded up your recovery waiting another day. Sorry that you had such a bad time. Of course all Appoligies will be accepted for spelling etc. Hopefully you will get a decent time of healing prior to radiation. Your skin needs to be in good shape before you tackle that stage of your treatment.
To all other readers sorry I am in a rush but even then I get quiet moments to keep up the prayers. Blessings joy and courage from Tricianne.
TricianneAust 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. Nov 2011Mammogram all fine.Next mammogram due Nov 20120 -
I haven't updated my situation in a while, so I thought I would chime in. I had a mastectomy (left) on Sept. 6th along with a sentinel node biopsy. I recovered very well from that without a lot of pain. The sentinel nodes showed micrometastasis, so I had to go back on October 5th for an axillary node dissection. Out of the 23 nodes removed, 3 had cancer cells. I was not prepared for how much more pain and discomfort I experienced with the node dissection as opposed to the mastectomy. I am still experiencing pain from that, mostly in the underside of my arm, but also at the incision site. It is getting better, but it's been a slow process. I saw my oncologist on Monday, and wasn't really surprised by her recommendations...
I will be starting chemo around the first or second week of November. I have to have a PET scan, MUGA scan, and a port put in first. The chemo will be AC, which will be once every 3 weeks for 12 weeks. Then, I will have radiation therapy, hormonal therapy (Tamoxifen), and, finally, a bolus of chemo once a week for 12 weeks. I had some blood work done the other day, which included the Brca test, though I don't expect to be positive for that.
It's going to be a long several months, but I'm trying to prepare myself mentally, emotionally, and physically as much as I can. I have long hair, which I plan on getting cut short, since I read that people who have AC generally lose their hair. I'm doing a lot of reading of books, articles, and tips from people who've gone through it and come out the other side.
My 5 year old daughter drew me a picture the other day, and had my mom spell out the words that she wanted to write on the page. She had meant to write "I love you, Mom. I hope you survive." What my mom heard her say, and consequently spelled for her was "I love you, Mom. I'll help you survive." Out of the mouths of babes.... Little does she know, she is one of my reasons for surviving!! I'm putting that picture in my "cancer" binder. I've received so much love and support from family and friends, and I'm so grateful for that.
0 -
TaunTaun... I wish you well with the next stage of your active treatment! Sounds like you are receiving excellent care! You mention that you have pain under your arm. If it continues, mention it to your breast surgeon. Following my SNB, I developed cording, also know as axillary web syndrome. After that, I developed a frozen shoulder. If it becomes very painful, physical therapy can help.
Thoughts and prayers to you!0 -
TaunTaun, I'm adding prayers for you! I came out of my BMX with surprises as well. The chemo is rough but it is doable. My daughters were 7 and 10 when I went through chemo. They adapt very well and I let them know what was going on at their level.
I also needed physical therapy for my range of motion on my ALND side. I ended up going to PT throughout chemo which was so nice. She really loosened up my muscles.0 -
Another quick update.
After a visit to GP to obtain new script for Blood pressure Tablets and the Gp having a quick look at the right infected breast, I'm back in hospital on IV antibotics again. Only 4 days at home. Dr's Plan to increase antibotics and asparate the breast every second day.
However, I actually got the registar to share some information. As I told you before, all my appointments to the outpatients clinics have been cancelled by the hospital. So untill today was in the dark with regard to the Path results from the surgery, what the plans are for my treatment.
Well here it is. According to the registar and the medical file he was reading. Tumor was 35x23x18 in size, pure mucinous. they took out 36 nodes 6 compromised. ER+, PR+ and Her2-. Will be having radiatiion, chemo and hormone theropy. All once this infection is under control.
I hate hospitals but this time I brought the laptop with me.
0 -
Ginia... Sounds like a good plan to eradicate that lousy infection once and for all! Readmissions stink... But are very common. The DH had cardiac surgery in June and was rehospitalized a week later! No fun! But I was smart like you! Brought laptops and smartphones to pass the time!
Your treatment plan follows the NCCN breast cancer treatment guidelines. Despite affecting your nodes, the good thing from your path report is that you have pure mucinous BC.
Hope you are feeling better soon!0 -
Ladies,
As this will be my final post as i am cured, firstly, thank you all for your support and kind thoughts over the past few months.
I was told today that i needed a phyc evaluation as I have some unresolved issues surrounding my BC and this infection. Dr (Registar) says that all this in in my head. I have checked out of hospital and will not be returning under any circumstansces. If indeed this is all in my head as this doctor suggests then i don't have and never have had Breast cancer and therefore will not require any treatment. As for the infection again this will resolve itself when i tell my brain that i don't have one.
Thanks again, all the best and goodbye.
0 -
Taun Taun, I've just finished my 6 rounds of chemo, (continue with herceptin, and tamoxifen to be added once body has healed a bit) My protocol entirely different from yours, partly likely due to the herceptin and what it doesn't 'mix well' with, so it may not help you to know, but I wanted to tell you anyway, it was do-able!
And my little granddaughters have helped me immensely.. You'll appreciate the blog post I wrote today about what the five year old said about my hair growing back! http://musingalong.wordpress.com/2012/10/28/best-compliment-ever-on-anything-on-the-top-of-my-head/
I'm so empathetic to moms with young children going through this. So glad you have family and friends to support you. My biggest learning in this has been to accept, and even ask for, help, and it's been truly amazing how many people have helped me. Quite a change from the 'strong independant never ask for help' woman I was, and it feels very good.
Sending you hugs and healing thoughts as you go through this next part of the treatments.
Ginia, if you stop by here...I hope one doctor's comments doesn't stop you from pursuing the best options for you to be healthy. It's very normal to get second opinions in this process, and not unusual to change doctors because a person isn't comfortable with one. I'm sure many of us have. Wishing you wellness.
0 -
Ginia...I want to add to Feelingthemagic's sage advise. Whether strong or weak...delegate! Get someone on board to help you through this maze! If you don't have a family member or friend to advocate for you, please contact your local cancer society and ask them to have a volunteer assist you. I truly wish you well.
0 -
Hi Ginia, A Registrar may have his own opinion but do remember they are not the Specialist! Second opinions are essential so my prayer for you is that you have the energy and courage to find out exactly what you are dealing with and if it is emotional and psychological issues we can all have some of those and the sooner you find out how to work it through the better it will be for you.
Feelingthe magic I love the way you capture your grand-daughters understanding of your bald hair. I am rejoicing with you that the fuzz is reappearing owning a fuzzie is a definite comfort.
My friends 6 year old daughter had loads of questions when I had bowel cancer and her comment "Well I shall just have to become a tummy doctor then" still touches me, how thoughtful for a young girl.
Lots of thoughts and prayers whether you are at the struggling stage or are coping and healing. Tricianne
0 -
I had my first chemo treatment today. I'm on an AC regimen, once every 3 weeks for 12 weeks. Then, I'll have 12 rounds of Taxol. The treatment today went well; I didn't have any trouble during the treatment. I'm still feeling well so far, though it's only been a few hours. My birthday is on Saturday :-). I'm hoping I won't feel horrible by then, but we'll see.
I had a port put in place yesterday, which I'm grateful for. My forearm and hand are still bruised from the multiple IVs and blood draws I've had over the past week. I had a PET/CT scan which was clear, so that was a relief to hear. My arm doesn't hurt like it did in the weeks following my axillary node dissection. It's still a little sensitive, but the pain is nearly non-existent. I hardly think about it now!
It's been a good day for me; I hope you all have found something good in your day, also.
0 -
TaunTaun... Wishing you well with your active treatment. I wish you a very happy birthday.
0 -
Thank you, Voraciousreader!
0 -
Hi TaunTaun8, Special healthy prayers for a Happy Birthday on Saturday may you feel well enough to enjoy it and may the year ahead see improved health for you. Lots of blessings from Australia where it is 10.40pm on Saturday. tricianne
0 -
Hi. My name is Andrea. It's been interesting to read this board. On October 24 I was diagnosed with mucinous cancer. I haven't had anything planned an I feel as if my doctors are moving slowly. They can't stage me because they don't know how much of my tumor is cancer. I have a 2.6 cm tumor but they think only 2mm of my tumor is cancer. I've had CT scan, bone scan, mammogram, and MRI. Today they biopsied the other breast and the other nodules on my diagnosed breast. I just turned 28 about a month ago. I was wanting to do a mastectomy because this experience has been draining emotionally and physically. Any thoughts on a mastectomy vs and lumpectomy?
0 -
Andrea... It really pains me to see someone as young as you are joining us. This thread is devoted to mucinous breast cancer. There are some other wonderful threads here at bc.org that discuss the advantages and disadvantages of lumpectomy and mastectomy. Why not chime in on those threads. In my situation the breast surgeon told me he thought he could get good clean margins and a good cosmetic result via lumpectomy, so I never considered mastectomy. Some women will choose mastectomy because lumpectomy simply isn't an option. Some do not or cannot undergo radiation which is usually recommended with lumpectomy, so they have mastectomies. Some women do not want to undergo breast imaging on a regular basis, so they prefer mastectomy. The reasons are many why one woman chooses one procedure over the other when given the choice.
I know now is a very stressful time. My best advise is to consider your options carefully. I wish you well!0 -
Sweet Andrea... If you can, ask your dr about Oncotypedx testing. It's a grief saver since it takes the guesswork out of treatment options (to me.) Visit their website if you want more info, but basically a piece of tumor is analyzed for the numeric prospect of cancer returning. If your oncotype is low, (personally only) I'd opt for lumpectomy. If high, you might want to consider all options. You are so very young to be "among us" and hugs go out to you. When my dr gave the number breakdown, it helped remove the gut-level, heart-wrenching what-ifs. Somehow the science behind it gave me more peace of mind, that decisions were made with not only my future in mind, but my options. PM me if you have any questions I can help with ever, ever. Again, hugs to you.
0 -
Thank you. Reading this board has helped with my knowledge of my diagnosis. Are there any questions that I should be sure to ask? I will ask about the oncotype. I just want to be sure that I'm fully informed because I have another appointment on Thursday with my surgeon. I don't think there are any more tests try could possibly go through so I'm hoping that ill get some treatment options by Thursday.
0 -
Ask all your options. Ask about your specific tumor position--some are positioned more favorably for lumpectomy, allowing clear margins. Some are closer to the skin surface and are trickier cosmetically and surgically. Ask if you opt for mastectomy, if reconstruction is during the same surgery. (My surgeon does both at same time.) Ask about support available in your area. Talking to a young woman who has been there/done that in your area, in your hospital, might be invaluable. Ask about recovery periods expected, and follow-up procedures expected. (Yes, each of us is unique, but your surgeon can guide you in what-ifs.)
The question that seems to get an honest answer--if I were your daughter, what would you tell her? (Much of what you might be told, will be it's a/b/c. You decide based on your lifestyle, your physical tolerances and expectations, your wishes.)
Please try not to worry about time and rush. Mucinous is the "best" bc to have, truly. It is known to have better prognosis and some research suggests it is slowest to grow and less likely to spread. (I had rfa, radio frequency ablation... which is not always an option.)
Best of luck to you. This is a great site to explore and find resources through the veterans. (My diagnosis was 14 months ago.) Again, hugs to you.
0 -
Andrea.. Mortality rates are similar for lumpectomy and mastectomy. Oncotype DX test is indicated for ER + tumors and will help in determining whether or not you can benefit from chemo. It won't be helpful in making the surgical decision.
0 -
Hi Andrea, I am so sorry you are having to deal with this at such a young age. This is a very confusing and scary time when you are uncertain as to what the best path is and you haven't had surgery to confirm the size and full details of the tumor but just remember as most others have mentioned on these boards before, a mastectomy can always be preformed after if need be but once it's done it is final. Speak to your team, that is your GP, Breast Surgeon and Oncologist. If you are not happy with their response always feel free to get another opinion. It does seem like the best way to deal with it is to remove the breast but studies have shown that mortality rates are no different after mastectomy as opposed to a lumpectomy with radiation. Listen to what your doctors recommend and if you are still uncertain then I suggest you get another opinion. I have to admit I have been dealing with this for over 2 years and because of the uncertainty concerning my particular situation I did have a mastectomy on my left side and consquently radiation as there were cells close to the chest wall and then a prophylactic mastectomy on my cancer free side. I had papillary lesions removed on my right side the following year after diagnosis so I just didn't want to continue having mammograms and surgery. I do not regret my decision what so ever but I am 46 and for me this was the best thing that I could have done. Mucinous Carcinomas are said to be less life threatening and if in fact it is as small as they think then it should be a more positive outlook than you think. I know how hard it is to deal with all of this but I really think that if your surgeon is happy with a lumpectomy then I suggest that is the way to go. If after the surgery they find that the situation is different, for instance, if they don't believe that they have enough of a margin around the tumor, then you can always have a mastectomy later if you don't feel confident to have more surgery to just get clean margins. If you are the type to need to research as I was, then it's important to know what you are dealing with before undergoing a mastectomy as this in itself can and does have it's own complications. Speak to as many people as possible that are professionals including a psychologist if need be, before making your decision, as you do have time to sort this all out. Good luck with your decision and I hope you have a great support group around you like family and friends that you can also talk to and hopefully, along with your doctors, they will help you get through this as it does get easier once the decisions are made and the surgery is over with. Please keep in touch and ask as many questions as you like as everyone is here to help. Take care...(((hugs)))
0 -
So sorry to learn of your cancer. You will find great information here. One thing that really helped me was the advice that "Red Sunshine" posted about a year ago on this thread. She is a pathologist and recommended that anyone with the diagnosis of mucinous carcinoma seek a second opinion on their pathology slides. I did that and learned my first pathology report was incomplete (not "pure mucinous" as I'd been told but "mixed cellular variant"). I don't think it would have made a difference in the treatment that I chose but I wish I'd had the information sooner. Good luck to you.
0
