Metaplastic Carcinoma
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Hi ladies! Wow! It's nice to find some other metaplastic ladies on here! Thanks for looking me up. I would love to join your group or help out anyone if I can.
Here's a little about me - I'm 32, single, no kids. I was diagnosed almost a year ago - June 8th '09. At first everyone kept telling me I didn't have cancer but no one was really sure what I had. Like someone else posted, my lump was painful so that was odd. It also grew really fast. From my first finding it and going to my GP, to my ultrasound appointment it seemed to take off and then by the time I saw the surgeon the first time, it took off again. When I first found it, it was about the size of a dime and then when I had it removed it was almost 5 cm. I had a lumpectomy first, then after my diagnosis I had a partial mastectomy with lymph nodes removed. I had 4 treatments of FEC chemo and then 4 of Taxotere plus 21 radiation treatments. I'm now on a medication Zometa that they are hoping will prevent breast cancer coming back in the bone. I'm also triple negative as well.
Anyway, it has almost been a year and I am feeling quite good right now. I have a full head of hair. I do get tired a lot and still nap quite a bit but I find my energy is a lot better than it was. I do have some pains in my knees and lower back at times but my oncologist said that is a normal side effect from the chemo and will go away with time.
To anyone going through treatment now - this time last year I was scared and I felt like I had a mountain in front of me that I had to climb. I got mad at the cancer and I also had a lot of grief and depression from losing my mom to uterine cancer a year before I was diagnosed. I focused my anger and negative feelings on fighting the cancer and relied on my friends for a lot of support. It wasn't easy but I got through treatment and I know you all will too!
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Karen: Your story sounds so much like most of the others of us posting on th mpbc threads. I never knew breast cancer could be painful, and yet it was. And actually feeling that it was growing was so scary. I have to confess that I got teary after reading your post....tears of joy and hope. Thank you so much. You and Judy have both completed treatment and your encouragement is good medicine like the chemo....without the negative SEs. lol
I'm going to post on the other thread (Metaplastic Breast Cancer) instead of this one, since I think it's title may be simpler for a 'newbie' to focus on and less likely to be confused with metastatic breast cancer. There are actually 3 threads now; 2 active and 1 inactive. I'm monitoring all of them to make sure we don't lose anyone or any new posters. What do you think? You and Judy may know of a better way to combine/delete the extra threads if that's even possible. It seems easier to have only one active thread on this topic. Not trying to 'take over'...just tired of switching back and forth. Too confusing to keep track of who said what where for this tired brain. lol Have a great day!
Jan
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Ladies - I am another fighter of this crazy disease. I found the lump in mid-Sept 2009 but had to wait to see my Dr until my new insurance was in effect on 10/1. Saw my gp 10/5 and she sent me for ultrasound & mammo same day - thought is was an infection since lump was very red & hot. Called me later that day & had me scheduled to see surgeon the next afternoon. Surgeon put me on 2 mega dose antibiotics and had me come back on Friday - not much change so I had to go in the following tues and she drained and took tissue and fluid samples. Saw her the following Tues and got the news I was not ready to hear. She sent me for chest xray, CT, MRI the following week and by the end of Oct I was scheduled for surgery - at that point I just wanted it gone. The tumor kept growing & draining. To make matters crazier, I had to move. The house I was renting was way too big and expensive so I quickly found a smaller house and moved in on 11/15. My sister came down to help take care of our Mom - she lived with me and at 93 wasn't handling my diagnosis well at all -and for me. On 11/19 I had a modified radical mastectomy on the right side and was released from the hospital on 11/20 - about 30 hours after surgery. I felt great - never took a pain pill but did take tylenol for the first couple days.
I don't think I really ever had time to take in what was happening with me. I am the one who takes care of everyone - not one to be taken care of. Mom was not doing well and we had to take her to the ER on 11/30. She was admitted and was diagnosed with congestive heart failure - something I was never told about when she was in the hospital in July. Mom didn't want to stay in the hospital and refused any invasive treatment, so she came home under hospice care 12/8. My brother flew in a few days before & my sister was still here. My sister left the next morning and my brother the following afternoon. Talk about being overwhelmed! I was not prepared nor was I strong enough to move Mom up in the bed when she slipped down. She passed away on 12/13. It was in the next few days that I had a PET & MUGA done.
My brother & wife came on 12/17 for the holidays and my sil went with me to the Oncol for the report of PET & MUGA. There had been a spot at base of my left lung that had everyone worried, but it didn't show in the PET. Another did and oncol wanted me to see a pulmonary - saw him on 12/29 and he did another CT at his office. Got those results 1/6 and he sent me to ORMC for a SuperCT. His hope was to use the sct as a gps to go in with a broncoscope & do a biopsy. Unfortunately this wasn't going to happen since the spot was too close to major vessels from the heart - so he sent me to a thorasic surgeon who looked at the CT and called my oncol - they agreed my chemo should start as soon as possible. The TS felt it was unnecessary to put me thru more invasive surgery when it wouldn't change the chemo therapy I was to have. I just wanted to get the show on the road! They agreed I should have a f/up ct in May. The good news is the May CT showed the spot was gone - it is very possible it was infection left from a very bad bout of bronchitis - any time I get sick it goes straight to my throat & lungs.
My port was put in on 1/21 and I had my first chemo was 1/28. My sister came to stay with me - she was here 13 weeks and her husband was able to come down for 5 weeks. I had 4 treatments of doxorubicin & cycolpospahmide which were very difficult. I was ok on treatment day, tired by fine the next day when I went for my neulasta shot then day 3 I was out for the count. I had my treatments on thursdays so I had the week-end to recoup. The first week I was really concerned if I would be able to go to work on Monday, but I was. I did get sick the first couple of treatments, but if I took my anti-nauseau meds I was fine. Lost my hair after the 2nd treatment - next morning in shower it was coming out in handful! This was the hardest thing - my daughter wouldn't let me got to hair salon to have it shaved - she came over and did it. Then the heartburn set in - I had to take prilosec every morning for about a month - also drank diet coke & gingerale. I'm not a soda drinker so this was very strange. When I had treatments, I lived on chicken broth, mashed potatoes, white toast & either oatmeal or cream of wheat. By about day 6 I was able to eat more, but still had to be careful. The next 4 treatments were taxol - this was much easier to handle. I did get restless leg but dr adjusted pretreatment meds & it was ok. I did have some muscle & joint aches from neulasta but advil seemed to help. My brother came down for my last 2 treatments - he couldn't have handled the first 4. I slept thru most of the treatment and when we got home, the next day was ok, but again day 3 was my down day. I finished chemo on 5/7 and started radiation 6/1. I have only had 4 treatments - I live in Orlando and we have some horrible thunderstorms almost daily - one day last week the rad office had no power & today the machine wasn't working. I will have 30 days of radiation.
For the first time I am actually on my own and it is strange. I have lived in this house for 6 months, but have spent less than a month here with just me and the dogs. I got very used to having someone here - with my sister, she cleaned. grocery shopped& did the laundry plus cooked every night and my brother did the shopping, ran errands for me and cooked. The dogs got spoiled having someone with them all the time who would let them out in the yard or take them on walks. Now I have to do it all, plus work and I am tired! But on the brightside - I can watch whatever I want on tv and not spend all week-end catching up with what I have on the dvr.
I kept copies of my blood work - I had chemo every other week- and watched as my counts dropped lower & lower. I am serverely anemic and often spend saturdays sleeping....
Feel as tho I have written a novel - One thing I did do was keep a journal of my "travels thru cancer"
I have kept a very positive attitude during this time - plus the support of my family & friends has been incredible.
We all seem to have similar stories and we are all fighters. You are all in my thoughts & prayers - Beth
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Thank-you to all of you such as ... pcmommon and countryfrau - for your nice comments about my blog http://www.benaroberts.com/
I have also started a Facebook page. It is only early days - but I hope to put information on it about MBC and some links to resources such as this forum that will help everyone.
http://www.facebook.com/#!/group.php?gid=124869030878992&ref=ts
Everyone with this terrible breast cancer - my heart goes out to you. I am nearly finished treatments - FEC-D Chemo- 36x Radiation and then Biophosphonate Therapy.
Contact me at any time if you have any questions and please sign up to the Facebook group.
Hugs and love bena
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Beth and Bena,
We are all posting on the thread "Metaplastic Breast Cancer" now.
We discovered there were 2 threads on the same topic. Including the 2 of you, there are now 8 of us posting....some newly diagnosed and others having completed tx.
Do either of you know of a way to have this thread deleted so as not to be a duplicate?
I've copied your posts to the other thread and hope you will join us there. There are so few of us with this form of BC and the support and information we get from each other is so helpful.
Jan
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I have searched for the new thread & had no luck - can someone send me the link? Looking forward to keeping up with one & all
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ucfmom06......I think the thread is in the 'Just Diagnosed Forum/thread Metaplastic......
deb
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Here's the MPBC link ladies:
http://community.breastcancer.org/forum/5/topic/752710?page=4#idx_103
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I couldn't get Dawn's link to work....try this one if you're having any problems
http://community.breastcancer.org/forum/5/topic/752710?page=1
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I've just been diagnosed with MBC. I feel like a million and have never been fitter or healthier. So the fact that I'm facing this rare cancer and subsequent treatment has me numb. I’m now scheduled for chemo every 2 weeks for 16 weeks. I've delayed start for a month for personal reasons. The first 8 weeks for chemo are 1 hour sessions and the second set 8 weeks for 4 hour sessions. And in between each treatment I'll need to inject myself with white blood cells to boost my strength. After chemo finishes in late November I get to dive right into the joys of radiation just in time to light up the Christmas tree without power because I’ll be positively glowing! And then following radiation in the NY hormone therapy. I’m looking at quite a year ahead. Chemo drugs slated are Doxorubicin (ADRIAMYCIN) and Cyclophosphamide for my first 8 weeks and then Paclitaxel (TAXOL) and Figrastim/Neupogen (GCSF) for the second 8 weeks. I have no idea what to expect and I have no idea what the survival statistics are.Anyone help me out here? I'd love to know the longest survival to-date of someone with MBC. Thanks! Need hope.
Diagnosis 05/03/10 3.6 cm Satage II Grade 3 0 nodes, ER+ PR- HER2-0 -
Hello Gracie,
I'm so sorry that you had to become part of this group for the reason you did, but, please know that you are in a good place to learn about tx for metaplastic breast cancer. The gals are so supportive.
There are 7 of us posting on the Topic "Metaplastic breast cancer' rather than here. You'll find a link to that thread in the post right above yours (gcpommom's post). If that doesn't work, go to the Forum Index and you'll find the topic under "Just Diagnosed". There were 2 sites and we all decided to post on the other one...there are 7 of us over there who can help you. Please join us there from now on.
Your story is so like most of the rest of us. This diagnosis came out of nowhere, didn't it? And the fact that there is so little known about it makes it all the scarier. The tx you are to have (ACT)is very similar to what others are to have/have had. Of the 7 of us, 3 have finished tx, 2 of us are in various stages of tx, and 2 haven't started chemo yet. If you go to the other MPBC thread you will finds tons of information that has been recently posted.
You asked about survival data. I can tell you that there isn't much out there about long term survival because they just don't have enough cases to study with any reliability. What I've learned is that MPBC tends to recur/metastasize earlier than hormone receptive ca, but that after 3-4 years the recurrance/mets rate falls dramatically. When I was first dg (Mar, 2010) I was terrified. But I've learned NOT to read too much online cause most of the info is old. I pretty much stick to this site for support. I figure I have 2 choices...take control or let the ca control me. My onc said this ca is treatable and I believe that. I just had my 2nd round of chemo (not the same drugs as you) and I feel good today. Treatment isn't easy, I won't lie to you, but I figure giving up a year for tx is worth the 20 or so more years I plan to have. But I didn't feel that way when first dg, so I can understand your fear. Go to the "Metaplastic breast cancer thread", read the posts, and post with us. We can help each other so much.
Hugs and good wishes go to you as you absorb what has happened to you.
Jan
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THERE ARE TWO THREADS FOR METAPLASTIC BREAST CANCER: THIS ONE (METAPLASTIC CARCINOMA), AND ONE TITLED 'METAPLASTIC BREAST CANCER'. There are 7 of us posting on the other thread.
We want to make sure we don't miss anyone.
PLEASE POST ON THE TOPIC 'METAPLASTIC BREAST CANCER' IN THE "JUST DIAGNOSED" FORUM INSTEAD OF HERE. THANKS
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Dear Blesslily
Hi, sorry I haven't been logged on for a while. I do wonder how your sister is? Is there any chance I could contact her? she would be the only person that I know of who has meta plastic as well. My doctor couldn't put me in touch with anyone. I live in Hamilton which is only about 1 1/2 hours from your sister in Auckland, thanks.
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THERE ARE TWO THREADS FOR METAPLASTIC BREAST CANCER: THIS ONE (METAPLASTIC CARCINOMA), AND ONE TITLED 'METAPLASTIC BREAST CANCER'. There are 10 of us MPBCers posting on the other thread.
We want to make sure we don't miss anyone.
PLEASE POST ON THE TOPIC 'METAPLASTIC BREAST CANCER' IN THE "JUST DIAGNOSED" FORUM INSTEAD OF HERE. THANKS
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I have the same thing. I end my chemo this month and start radiation. My doctor also wants me to take a chemo pill along with the radiation.
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I don't know where to get to that thread on metaplastic cancer--the just diagnosed forum.
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To all of you with metaplastic bc:
Can anyone tell me whether or not you were told upon diagnosis that you had metaplastic b.c. or did they tell you IDC. I was told IDC. At my last chemo appt on Jan. 12, 2011 I took my pathology report with me. I asked him if I had misread it or did it state that I had metaplastic bc.
He stated that I had metaplastic features. Like most of you my tumor was not attached and I am triple negative. I am one week into radiation but I have unbearable bone pain and am waiting for an appointment for bone scan. I am having difficulty laying on radiation table or anywhere else for that matter. I had complained of bone pain throughout tx but complaints fell on deaf ears. Oh yeah, Med Onc wants me to start tamoxifen because of the lumps appearing in both breasts. They will be calling me for bone scan and sonogram as my cancer did not show up in mammo. Can't take this hip, leg and rib pain much longer. Thanks.
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Cleb - it sounds like you have the same diagnosis as me, almost down to the date. I was told IDC, but on my path report it says metaplastic as the histology. My onco and my rad onco (I asked her to double check the story I was getting) both said mine was not a "true" metaplastic cancer, but that it had metaplastic features. This was explained to me as meaning that it was partially metaplastic, but not enough to be a true metaplastic.
What do you mean by the tumor "was not attached"? I don't remember hearing that about mine.
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Oh my, welcome ladies, I'm sorry you had to join us here. First off, I'd like to say that this particular thread has been replaced with a more current one, and there are many ladies there with MBC. We decided that one main thread would be best, you can find it here:
http://community.breastcancer.org/forum/5/topic/752710?page=16#idx_456
If that link doesn't work, copy and paste it into your URL bar, or look in the Just Diagnosed forum for the Metaplastic breast cancer thread.
We also have an active Facebook page, with 40++ women with MBC, the link is:
http://www.facebook.com/group.php?gid=124869030878992
Cleb: I was told MBC right off the bat, no mention of IDC. I will say this, I had horrible pain in my arms and legs for at least 2+ months after chemo ended, maybe longer, it happens to alot of women. Did you get a scan scheduled yet? I'm a bit confused as to why Tamoxifen? You are ER-, so not sure why they'd give it to you. What lumps are they talking about? Do you have new lumps in the breasts?
Irr4993: I think that Cleb means the tumor wasn't attached to muscle or skin....they thought mine was attached to the muscle side, but it cleared by like 1mm. Sometimes a tumor will have partial metaplastic features (squamous cells, basil cell or spindle cell), I would say any MBC features make it MBC and not IDC, but really it doesn't change treatment anyway, since there is no specific treatment for MBC yet.
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Thanks so much ladies,
My path report states mostly squamous cell with some apocrine features with a few foci of dcis, but p63 is negative. I have a cyst in my other breast that has changed from palpable to very hard and 4 times larger. Also have something along the bottom breast bone a lot like the tumor I found in August 2010. My breast that had the tumor also found a small lump away from all scar tissue and it feels like a lump under nipple. The areola has changed shape substantially. My original tumor was 2.5 cm but when they did original sonogram it appeared to be 1.5 cm because the tumor moved upon compression and it appeared that way on scinti. I went to e.r. with pain and it seems that I am having a severe bout of sciatica (sp) just for icing on the cake. I do have both sono and bone scan scheduled in next five days. Thanks so much for listening!!!!!
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One more thing from Cleb,
My Med Onc stated that because of the metaplastic features and the palpable lumps in other breast, the tamoxifen would be hopefully a prevention of another cancer developing in other breast which can happen with metaplastic bc. I just don't know. Thanks so much.
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I was diagnosed with metaplastic breast cancer about a month ago. I've been searching the web for others with this rare type of breast cancer. If anyone would like to contact me, please feel free. I would like to hear about the experiences of other women with this diagnosis. I'm told I need chemotherapy and radiation. I'm 61 yrs. old, always considered myself very healthy, and I'm a bit concerned about the treatment and side effects. I'm a Christian, and I know the Lord is aware and wants to be glorified through this, and I pray I will be able to do that. Thank you to anyone who will pray for me.
Charlotte
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Charlotte: Hello, welcome to our group, so sorry you had to join us here. I sent you a private message, with links to our other pages. We don't use this particular thread anymore, so I sent you the link to our other thread, plus our facebook page.
I know from experience that there are not many boards with MBC ladies that are active, except our thread here and our facebook page.
gotta go make dinner, talk to you later
Hugs, Judy
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I have metaplastic breast cancer. I finished chemo in February and I'm now in radiation. I am also taking Xeloda along with the radiation. I have done very well in terms of side effects. The ones I've had have been manageable. I did have a mastectomy on the right side and that went very well too. I'm glad to answer any question I can if you have any for me. Your attitude is beautiful. That will get you through this!
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Hi all
I am trying to work out exactly what type of cancer I do have, like many of you above I have TN, IDC, Grade 3, stage IIIb, however, it has come back in form of a rash and is in my dermal lymphatics. I do not think it is metaplastic but am trying to see how one tells the difference what should I ask the Doctors?
Thanks for any help.
T
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Tek2009, if it is metaplastic, it would've been noted in your path report, but you can always ask your doctors....the rash makes me think maybe you are talking about Inflammatory Breast Cancer, there is a forum for that here on bc.org. Your doctors should definitely know which it is based on your path report. Hope that helps a little? Hugs
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gcpommom
Thank you for that, I tend to agree that it is probably IBC it was just that it seems to have morphed from something else but the doctors say the cells are same as original ones but all I know about those is that it was TN IDC. This whole cancer type things is interesting I really feel they cannot always know especially as not enough research is done. Also no matter what it morphs into if cells are similar to the original diagnosis they only ever seem to call it a spread of what you had to start with. In my case it only seems to make sense if what I had to start with was IBC, the itch and rash is so bad at the moment and the skin swollen and red.
Anyway hope you are doing ok and stay that way, love that you have a Yorkie, I would love one.
Thanks
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Tek, I agree, it is all very confusing, it really is. What is your next step? Have they done any biopsies yet? Let me know how it goes. I don't check in here as often as I used to, but I try to. I am usually on FB.
Yorkies are really great dogs, they are smart and train well. Chihuahua's on the other hand...not so much, lol.
Hugs, Judy
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GCPommon
Hi again been busy trying to avoid it, well sort of I have friends visiting and between them and squeezing in lots of hospital visits to find out what might work now if anything have not had a chance to post.
Well met with a new consultant at same hospital who described me after examination as having "erythemateous and inflammatory skin disease" does anyone know if this is finally IBC? Am posting everywhere in case someone knows.
Thanks
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