Recurrence after bilat mastectomy?

Hi Pamelajo,

I too had Hodgkin's Lymphoma! I was diagnosed when i was 14 and had chemo and radiation.Do you recall what chemo you had? I had CVVP, it was an experimental chemo from what i remember. I aslo had a BMX in 2004 for BC from previous radiation TX's. I am fortunate that they found it early because I was only 32. I had actually hurt my back at work and they did an MRI and found that my spine was suspicious for mets. Thankfully it wasn't, just the BC there. I had one dose of adrimycian and cytoxan and stopped because it damaged my heart. I know have cariomyopathy from that and in 2008 had a heart attack. I have a stent in so no more MRI's for me. I had 5 reconstruction surgeries(TE's) 2 sets of expanders and 3 implant echanges. On Sept. 15th I go in for surgey for 2 skin nodules and a lg. mass along my mastectomy scar. I was a birads 5 on the ultrasound and I'm pretty positive that it's cancer...Time will tell I guess. I hope and pray for you and please fell free to message me privately if you like. It's unbelieveable that they treat individuals with radiation for one cancer only to have that person develop another in the future. TOATALLY SUCKS!!!!! Hang in there~ Bernadette

Hi Everyone - Was just reading back through this thread and wonder how Simdavidson is doing - she started the thread but no notes from her in a while.  Anyone in communication with her?  

can I just add that cancer sucks..... alot?  no, that's not a question, that's a bonafide statement.

we have to keep thinking to ourselves that this will NEVER happen to us again.  If you believe it, you can achieve it.  (and it sounds like so much blah blah blah in my head as I say it, so yea,) but seriously, this whole breast cancer thing is out of &()Y^&% control.

I have no breast tissue left.  I've had mx, recurred (tho the onc says it's a progression of disease, not a recurrence or new primary) had a lumpectomy on the mastectomy (didn't know that was friggin possible), and finished chemo a second time for bc.  I'll start rads in two weeks. 

THROW THE KITCHEN SINK AT ME!!!  I'll step up to the plate and knock that thing outta the park. 

Since having my last abraxane a couple weeks ago, I've noticed my right recon'd foob isn't quite as red and the little spotty bumps are slowly fading.  Makes me think all that poison was building up on my lymphedema side and ruining my much loved fooblette!!!!  dang chemo.  And here all this time I've been pondering "is it cancer? could it be cancer while I'm on chemo??"  geez.....  paranoid much?

Anyway, crazylifex3, I give you fistbump for being not only a breastfriend but also a fellow hodgkins survivor.  We are few and far between thank God, but I'm happy to be in your company.  You are in my prayers

As far as scans I hear the reason why they don't do these yearly or every 6 months is typically the cancer is too small to see if you are asymptomatic. 

I was told that BMX does not get mammograms. I will be examined by my BS and Oncologist every 3 months (alternating doctors) the first year then I think every 6 months for at least 3 years maybe more. I didn't pay too much attention. Just figured I'd make appointments as needed.

Although I had given him permission to take the entire breast where the bc lump was, my surgeon refused to do it.  He instead hit me with several weeks of Chemo and 35 radiations after a lumpectomy.  He seemed more concerned about getting any loose cells with Chemo and rads than taking the entire breast.  I was angry with him at the time but since I have learned more, I think he made the right decision for "me".  He also made sure I was put on Arimidex a while after finishing the other treatments.  I am now into my 6th year of Arimidex trying to make it to 10 years.  What happens after that, if I am still ok, is still a question mark.  Personally, I would never do any type of mastectomy unless I followed it up with Chemo and Rads to protect myself from anything "roaming" as they say.  Only time will tell which Oncs are making the right decisions for their patients.

I originally found a lump in the right breast during a self exam.  I had a normal mammogram in Aug 09 - it showed notihing.  After the first bioposy that confimed invasive ca BS had more biposies and mrii done.  It confirmed I had IDC in right breast (20 tumors total) and 2 precancerous cysts in left.  No lymph nodes were thought to be involved.  BS recommendation was a mastectory on right and lumpectomy on left.  I made the decision to do bi-lat max.  Went into surgery still believing no lymph nodes although I told my mother and husband morning of surgery "do not be overwhelmed when they find this is my lymph nodes, I am prepared for that so you need to be".  It was - 4 of 22 were malignant.  Sentinal node didn't work so the BS actually found the first two by feeling around.  No nodes were check in my collar or left side.  I was referred for chemo and I have 6 Taxol tx left.  I saw BS this week and he told me I didn't need rad if I didn't want it.  I quickly advised him I did!  I had one tumor that although we got clear margins it was only .5mm from the chest wall.  Too close for my comfort.  I have a rad consult next week and if ithe rad onc isn't willing to do rads I will find one who will.  What does concern me is I keep being told - "we don't do scans or CA-15 (tumor market) tests because they aren't reliable".  Give me a break!  Frankly sitting around waiting for a syptom to show up that my ca reoccurred is down right frightening.  I may have to push some buttons on the scans and other stuff before its all done. 

Anyway, my main point ladies - be your own health advocate.  Ask questions, bring article along with you to your ca team and make sure they are answering you.  My BS told me I only had 3 lymph nodes involved the other day - I pulled out my final path report and handed it to him right there in the examing room - he then said "oh you might need radiation". 

Hang in there ladies!  We will get through this journey one step at a time.  Sending hugs to all.

Pamelajo, I hope all is well with you as I have not seen you on here in a while. I think of you often and you are in my prayers as well. The pathology came back and unfortunately my cancer is back and it has mets to my spine and knees. I am sooo friggen bummed. However, I am happy to report that my receptors have stayed the same. I do have a question for everyone and that is how are you able to write at the bootom of the screen and put multiple diagnosis on your stats?? Please get back to me pamelajo soon!

Bernadette

Marcilene, I had the exact same thing as you and had bilateral Nov.13. Started with Arimidex,but now on Tamoxefin because I couldn't tolerate the bone pain. My oncologist says there is no cut and dried figures on recurrence. The odds are on your side,there will be none. I work on not thinking about it and I am grateful it was found early. I did not have reconstruction. Hope you are doing well.  Shirl

tobyj, had my lump (in bc breast) biopsied yesterday.  Was a tricky situation with the lump right up next to the implant.  Radiologist was rockin' fabulous...I watched the whole US guided needle bio. on the screen.  She had nerves of steel, and I finally had a good night's sleep...because now I'LL KNOW, good or bad.  My advice, ignore the bs who says it's probably nothing.  It's not in THEIR breast!  

Great news, Beckward!!!!!!!!!!!!!!!!!

bemmett - When you say immediate recon, did you have the Single Stage Implants at the time of double mast?  I ask because that is what I had and I feel several odd lumps or bumps and am wondering if maybe that is part of the healing process.  My surgery was 4/14/10.

I was diagnosed with breast cancer almost two years ago I was only 26 years old then, and did chemo, mastectomy surgery and radiation, also taking tamoxifen. I just found out last week that the cancer is back, I have  this looks like a skin irritation where I had my surgery and had a biopsy done and it came back positive, I did a PETScan few days ago and waiting for the result, will find out tomorrow. I just don't know why it came back this soon as I did everything that doctors told me to do on the first time. I thought I would share my story.

scheduled surgery to remove new lumps (post bilat mastecomies) and swap out one prosthetic.  I can't wait for biopsy results.  my main concern is that they REALLY BIOPSY all of the new lumps. God bless.

have surgery to remove 3 new lumps, biopsy, swap implant on thursday.  I can't wait to have lumps removed.  i'm frustrated with horrible lack of support from "friends" this round.  i'm not complaining, but seems like they're avoiding.  i don't want to hear excuses for that behavior any more.  people know they should ask if you need help or support.  when they decide not to or avoid, they are simply rude.  after this surgery (my 8th surgery in 2 years), I am cleaning house.  No more contact with fair-weather non-friends.  Had to vent as it's overwhelming and hurtful.  God bless