Mixed Type BC

Hi PrayRV (and Day when she comes here) and anyone else who comes here,

This morning I noticed down in the Moderator section in the forum list, that Day had asked if there was a place for those who have mixed diagnoses for their breast cancer, and this be the place, so thought I'd just put a few intro type words in here on mine, which is listed in the little section at the bottom of each person's post:  IBC, IDC, and Melanoma. 

They did not biopsy my Inflammatory, it was a clinical diagnosis, it was very swollen, heated up, hard on the end (that's what took me to a woman's doc), pain came later, and then I got a marking on my skin in the front that looked like a smudge of lipstick.  Then I was biopsied specifically at the site of my growth (which I never felt), and came back with Invasive Ductal, I had one 5cm+ tumor and two smaller ones off to the side, and right above the large growth is where that smudge came, so I couldn't swear if it was IBC or the IDC that made it do that, but I thought from seeing pictures of IBC that it was part of an Inflammatory presentation.  AND THEN, I had a mole on my breast that, as my breast got larger and larger and became painful, that mole really started to change, it was kind of a medium-sized and -colored mole with a couple freckle type moles near it, and it all merged into one very dark looking mole, so I knew melanoma was possible, particularly since mother and father had had it, and alerted doc to it, and he said he would take the mole off during surgery.

So, after five months of chemo (I had wanted surgery first, but had to follow protocol), and then surgery, the doc indeed took the mole off with margins at same time as mastectomy that removed my breast (no reconstruct).  When the labs came back that the mole was indeed melanoma, well, he was to consult with an expert on margins for melanoma, to make sure he did that right.  Also I asked the nurse if there was anything in my labs about the Inflammatory cancer situation, and she said there was nothing there.  I KNOW my doc didn't forget about it, so I will ask him this Thursday when I'm scheduled to see him.  The LAST thing I want is recurrence, and if I have to go back into surgery (God forbid), by golly I will immediately, becuz even tho I would cry a river at that news, it's better to get it all done in this "round," than to have a year or two go by and have to face this awful music all over again, with perhaps even worse stats than I face now. 

I will say this one personal note on my "mixed" diagnosis.  I absolutely could NOT believe I had cancer, and such a wild type, so aggressive, the picture in my mind's eye of it spreading was so scary to me, and I simply cannot believe that in my entire life I had never gotten such a disease or any disease remotely close to such a disastrous diagnosis as cancer like mine.  I did have a grandmother who had ovarian cancer, and so I had kept up with checks about that when I reached her age, but never thought of breast cancer.  And I keep trying to imagine WHAT did this to me.  Did I stand too close to a microwave oven too often?  Did I eat something strange at a restaurant?  Was it the antifreeze in the pipes of the new place I moved to in the dishwasher before I found out? 

And now that I've finished chemo and surgery, with radiation coming up soon, I find myself praying that the researchers will try to find some new way to treat this awful disease without having to torture so many of the female (and male) of our population, the stats are unbelievable (but of course I've forgotten now).  I am 60 years old and disabled by spinal injuries from a car accident to begin with, and so I'm not up to all this stuff like maybe the younger ones.  But I imagine ALL women (and men) who have this breast cancer routine are truly fed up with just how much pain and discomfort and exhaustion that treatment unloads upon us, and it lasts SO LONG, and no amount of being glad to survive will change how hard it is to stand up to this particular torture.  I believe this is why we're called "brave."  Oh, I'm a happy camper knowing that I have bought some years with this treatment, and my eyes were opened in a big way going thru this about what a gift life is, but please, won't someone come up with a way to make this easier on people?

In closing, I want to say that my treatment, I have no idea how it stacks up to others with Inflammatory Breast Cancer, I've visited my chemo website when I was doing chemo, and the surgery website when I did that, and I looked in on IBC and glanced at their treatments, and it seems types of chemo and order of surgery, etc., varies from individual to individual, diff diagnoses get same treatment and vice-versa. But maybe someone rather smarter than I am KNOWS more about IBC and its standard protocols, when compared to IDC and melanoma and Lord knows what else.  Oh, and while my IDC growths were shrunk to ZERO after chemo, I have enough Ductal Carcinoma left to call it DCIS (Ductal Carcinoma in Situ), I think those are the initials and names for that one.  GG

My tumor was not mixed, but I had IDC and Paget's Disease

Rosemy, we are very similar.  My tumor was 5 x 4.5 x 3 and was IDC and ILC.  I'm also triple positive.  No skin involvement, though.  I just finished radiation in July and am still on Herceptin and, of course, Tamoxifen.  Nice to meet you mixed type ladies!

I had IDC and ILC in right breast so I kind of know what you mean by being mixed. My BS told me that when you have 2 different types in one breast that they want to do a MX. I never did question that and I did have a BMX but now 8 mouths later sometimes I wonder what if I had told her no and go ahead and do another Lumpectomy wonder if she could have done  that and what my outcome would be. I know I am not suppose to say What if but I do to myself. I have never said that out loud to anyone.

Nancy

Dogeyed - I  have to tell you I just about cried when I saw your diagnosis. I also had melanoma in my breast. When They did the biopsy it showed I had breast cancer and melanoma in my right breast. After the surgery it was 2 separate tumors in the same breast. I had a mastectomy with no reconstruction. We are still wating on last of all my pathology reports to come back. 

I have had 2 rounds of Adriamycin.  I go this week to see the radiologist because the melanoma nodules have come back with a vengence. In the last 5 days one of them has grown and is pinching a nerve in my right shoulder and is making my right hand useless. I am right handed so this last weekend has been very frustrating. It is not easy for me to ask for help. DH is being a real angel this week!!

I had cancer soup!  idc, ilc, suspicious junk, one big @##$% tumor that got chemo. lump, surgery again. rads.  a funky shaped breast, no more tumor and 6 more years of great living.  pick your treatment with the best info and then keep moving on.  i didn't worry so much about the dx after the initial shock.  hope you all do well and move forward.  deal with your hand but keep playing!

Take care,

hatttie 

I'm back again, and SUSAN I hope you drop by and give me the latest scoop on your melanoma situation.  Mine began as a mole gone wrong, and I am wondering how they found out about more of yours springing up, was it a scan, or ultrasound?  How will they treat it?

I went to the melanoma expert, waited over an hour for her, and because of back problems I could not wait another second, so that's on hold.  I am not sure there is anything else they can do than they've already done for my "regular" cancers.  Chemo, mastectomy, rads...  My cancer doc said it was not critical I see that doc, but hopes I will go back.  I don't think so.  Maybe I'll get a dermatologist to remove all my other larger moles in my body, I don't know.  GG

VictoriaB, Yes when my second cancer was found after 2 surgeries my BS recommended a MX. She told me that when 2 Cancers was found in the same breast that is what she recommends. Beings my was IDC and ILC which is a sneaky one and had not been detected by Mammogram, US or MRI I never thought twice about a MX matter of fact I choose a BMX because I never wanted to worry about the other side, This is just my  doctors opinion. I am sure they are all different.

Nancy

Glad to see this new forum.  Interesting topic...

In 2009, I was diagnosed with mucinous breast cancer (invasive) and DCIS, and a week ago, I was diagnosed with melanoma.  I'm having a hard time dealing with the fact that at age 32, I've been diagnosed with two different cancers!  That means I have to be vigilant about these two cancers for the rest of my life, getting regular checks of my breasts and skin...

Nancy, I'm sorry you're having the "What If"s... it can be difficult, I know.  I'm in the opposite situation - even though I had two different types of breast cancer at once, plus "atypical ductal hyperplasia" (e.g. pre-DCIS), and I had unclear margins TWICE, my surgeon didn't tell me I needed a MX.  In fact, I was scared and leaning towards having one, but she kind of talked me out of it and we went for another re-excision!  Overall, I'm glad I just got the lumpectomy, but... now that I've been diagnosed with a second cancer, I'm a bit freaked out about my body and wonder if it would have been better to just be extra safe and get the MX.  I'm not saying the melanoma has anything to do with the fact that I had a lumpectomy, or has anything to do with my breast cancer at all (although it MIGHT - I'm researching the connection between brCA and melanoma), but now I'm feeling scared like I have a "cancer-prone" body... ugh.  And I hate it that the treatments for breast cancer increase my risk for other cancers. What an awful rock-and-hard-place.  The radiation to my breast, because I had just turned 31, increased my risk (only very slightly, but still) for other cancers down the road...and the Tamoxifen increases my risk (again, very slightly, but still) for endometrial cancer and Planned Parenthood is wanting to do an endometrial biopsy because I've been bleeding for 15 days straight, and the radiation made my skin more sensitive to the sun, and then I was diagnosed with skin cancer.... It's TOO MUCH!

Thanks, dogeyed.  My melanoma was on my lateral thigh.

I'm in the beginning stages of learning about melanoma, so there's a lot I don't yet know or fully understand... but I was under the impression that melanomas are usually caused by UV sunlight exposure and can also show up in places on your body that haven't been exposed to much/any sun.  People sometimes have melanomas in odd places like between their toes!  I wonder if radiation therapy makes your whole body more sensitive to sunlight, or just the area that was irradiated?  What you say makes sense to me, re: when your body suffers from a breakdown, new doors are opened for other problems... I've been doing my best, since the BC dx, to build up my immune system through increased fruits and veggies/better diet, anti-cancer supplements, stress relief, meditation, etc.  It's easy to get frustrated and think it was all useless, since I was just diagnosed with another cancer, but on the other hand...maybe all of my anti-cancer strategies dramatically slowed the growth of the melanoma.  It was tiny and in situ.  Maybe if I hadn't been doing all of those anti-cancer things, it would have grown and spread faster.  Impossible to say, I guess.

I'm not sure if my melanoma derived from an existing mole... I've been getting annual skin checks for a few years now, but this year when my dermatologist saw that mole, she couldn't remember if it was a new one or if she had just somehow missed it during last year's check.  I couldn't remember seeing the mole before, but I also couldn't say for sure that it was new... so she just removed it.  And thank the gods she did!

I was diagnosed on Sept 12 of this year with both DCIS and ILC in my right breast. Hormone positive,  HER negative, Ki-67 25-35%. I had a modified radical mastectomy and sentinal node biopsy last Wed (10-19-11) and the path report came back with the classification T4b, N1, MX. I see my surgical oncologist this morning for follow-up and hopefully he'll give me a definite staging, but from all I can discover on my own, the path report puts me as a Stage IIIB. Am I interpreting this correctly? And if I am, what is the best course of treatment and the prognosis? My doctors chose to do the mastectomy before chemo because the ILC doesn't respond as well to chemo - my tumor was 2.7 cm and 2 axillary nodes out of 10 taken were positive for both types of cancer. I've only met with my medical oncologist once, and that was before I had done much research into this. Now I'm concerned that he may not have treated anyone with a mixed diagnosis like this and at this stage, so am planning on trying to talk to him again before beginning chemo to see if I might need to find another doctor. Just how rare is this type of mixed diagnosis? I was given the T4b designation because the skin of my aureola and nipple was fully involved - also I was told that if I had chosen to have a lumpectomy, they would have had to go back and remove the breast anyway. I'm also planning on a prophylactic mastectomy of the left breast and reconstruction of both after finishing chemo. I'd love to hear from anyone else who has been in my situation - information is difficult to come by and I don't feel as though I know enough to make the best choices for myself. Also, since I'm new here and don't know protocol, is it customary or is anyone interested in seeing pictures? I have a close-up of my nipple/aureola area showing the cancer but didn't know if it was appropriate to post or not.

scd -

I too have a diagnosis of mixed cancer:  DCIS and mammary invasive cancer with mixed ductal and lobular features.   According to my research most cancer (about 80%) is ductal;  lobular cancer is less common (about 15%).  "Mixed" cancer is about 4% - so it somewhat rare based on what I have been able to determine.

My research has also indicated, consistent with what Roseamy said, that having a "mixed cancer" diagnosis of this nature may not have clinical significance.  Treatment of the cancer may depend more on whether it is estrogen/progesterone/HER2 positive or not, and/or whether it has been found in the lymph nodes or elsewhere, rather than on the mixed nature of the cancer.

Did you receive a final staging of your cancer from your BS?  Do you have a date for the MX of your other breast?   Did you begin your chemo treatments yet?

I hope you are getting some anwers and reassurance from your drs.  So sorry you are having to go through all this.  Let us know how you are doing.  thinking of you - amsk.  

ps - I am scheduled for a BMX in December.  Tentative date right now is 12/4. 

I didn't realize there was a forum just for us mixed gals- don't know how I missed it! 

My original pathology from core biopsy showed 2 tumors, both with ductal and lobular features, and sentinal node with same features. I thought straight off I'd have a BMX - since I did neoadjuvent chemo due to tumor size, my BS talked me into a lumpectomy...Well, margins were terrible so again I thought BMX, but surgeon convinced me to do uni...Still trying to decide whether or not to have MX on other side.

Surgical pathology showed IDC, ILC and DCIS. I thought I had a lot of different cancer going on in that breast...but so sorry that some of you here have dealt with that plus so much more!

Best wishes to you all, and please, will anyone post if they know of any studies of IDC+ILC mixed? Just curious, thanks and hugs. 

My BS only recommended my Right one that had IDC and ILC but when I told her I wanted a BMX neither her or my Insurance Company had any problem with it. I have a family history but I  am BRCA -

Nancy

Mine was first diagnosed as IDC, stringly ER/PR+, Her2-. When the cancer was removed the original diagnosis stood for most of the tumor, but they also found a section that was weakly ER+, PR/HER2- metaplastic BC. I did my chemo pre-surgery, but according to my BS and MO the treatment would have been the same anyway.