Recurrence after bilat mastectomy?

Mykidsmom

Ingrid - Well... that certainly stinks!!! THere seems to a be alot of ladies in teh 1% category!! Take care and enjoy those horses! - Jean

lollybeth

Laura, I want to make sure I understand because this strikes me where I live. When they did the path report after your mastectomies, did they find a microinvasion, or did your initial diagnosis remain DCIS stage 0? 

 By the way, I was told that recurrences usually occur within 2 years of initial diagnosis....  I am 18 months out....

kerry32

Can I ask what it looked like?  Was it just a lump?  I had a bilateral a year ago and find doing a self exam to be so different - I sometimes feel I don't really know what i'm looking for.  I'm sorry you're going through this.

slmdavidson

Lollybeth - I honestly don't remember if I had microinvasion back when I had my mastectomy.  I'll have to dig that report out.  I do remember them saying they only found DCIS.  I did talk with an Oncologist last week.  He basically said there was no way to know whether my recurrence was a few cancer cells left behind or a possible metastasis to the skin.  I couldn't get the Oncotype score because the lump was so small (a good thing I know) but based on all the other info, he didn't feel chemo would be of much, if any benefit.  So, I am just doing rads now and will start tamox.  I will tell you that my Oncologist said having a recurrence after mastectomy is around 1% but that is also for IDC, not DCIS. He said he wouldn't see another "me" (DCIS then recurrence) for another 3 years or more!  The odds are crazy - why can't I get those when I play the lottery?

Kerry - I just noticed a very small lump.  It was very close to the incision line and where the new areola was.  If it had been any closer, I would have assumed it was scar tissue.  It just felt like scar tissue really, just there was no scar directly on top.  I'd just suggest you know what it normally feels like - if you feel anything other than that - get it checked out.  My surgeon was floored.  Often times there will be a fatty necrosis that forms as a lump under the skin which is benign.  He was convinced that was what mine was.  Again, very rare and he's only had one other patient where she had DCIS and a recurrence.  So hopefully, non of you will have this either!

Laura

CAZ

Laura,

Thanks for the post, but I'm sorry you've been hit with this.  My PS said that self exams were the only follow up I'll need since my PBM and exchange surgeries.  She said that a lump should be palpable since the chest wall in now right under the skin.  I was never great at self exams before surgery, but your experience has encouraged me to try harder.  Best of luck and keep us posted.

Carol(AZ)

slmdavidson

Hi Carol

That information you just shared was reinforced last week to me by the Oncologist.  He still maintained that doing mammograms and MRI's is not an effective means of catching a recurrence and doesn't recommend them.  In fact, during my work up in January, no cancer showed on the mammo or MRI though I had two resections to get the cancer out this time.  These are more quickly realized by finding a lump just under the skin so keep doing those self exams! 

Take care!

Laura

Mykidsmom

Well, if there is any good news, at least I should be able to feel the lumps now. Before my natural  breasts were just much too lumpy and bumpy normally to find anything. Thanks for the recommendation ladies, I had not heard that I should do breast self exams. Best wishes w/ your treatment. Now you need to really win the lottery, it's only fair! - Jean

kathy55

Hi Ladies,

  I'm so happy to have found this forum.  I was diagnosed with DCIS multifocal in 1996-age 42.  Had bilateral mastectomies.  I was told radiation not necessary.  Nodes removed on both sides were neg.  2 years later found a lump under my arm, positive for invasive BC.  Had radiation and chemo.  2 months ago found another lump in the same area.  Its been 10 years!  Once again invasive BC.  My onco put me on Femara today.  I was surprised no chemo.  My tumors are ER+,PR+, and HER-.  I am still in shock, but should be relieved all my scans are neg.  I'm having a hard time staying positive.  I had chest x-rays every year, but I found both tumors during my self exams.  Are any of you taking Femara?   Thanks for your thoughts.  Kathy  

Mykidsmom

Kathy - Wow. Does your BS tell you why you keep getting bc despite having done so much to remove the risk? I am not taking femara, but my friend is. She doesn't like it too well, but what can you do? It is interesting that both lumps are under your arm, were they obvious? Perhaps the silver lining is that you found the bc very early. Take care. I am sorry you are dealing w/ all this! - Jean

kathy55

Hi Jean,

Thank you for your reply.  The only thing my Drs. say are that its very unusual, I must have  a very persistent cancer.  I was not able to tolerate Tomaxofin 10 yrs ago  After 8 rounds of chemo which induced menopause and 6 weeks of radiation I was wiped out.  Hopefully I'll do better with the Femara.  I am surprised about the no chemo decision.  I worry about that rogue cell hiding in waiting till you least expect it.  At least I cought things early.  Please, please do your self exams.  Kathy

slmdavidson

Hi Kathy

Your post just gave me dejavu.  Not exactly the same, but I also had multifocal DCIS (age 41) and bilat mastectomies only to have IDC show up again 15 months later under the skin on my new foob.   No rads or tamox or anything after the first diagnosis and surgery.  Now I just finished my second week of Radiation and am expected to start tamoxifen after my rad treatment is finished.  HOWEVER, I just got a call today regarding the PET scan I had last week.  They found one hot lymph node in my chest, under my sternum (breast bone).  They are going to wait and take another CT after 6-8 weeks of Tamoxifen. The nurse said my kind of cancer (ER+) is better treated with tamoxifen rather than chemo. I was suprised to hear that.  I'm also surprised that they are just leaving it in there....it's all new as of today so haven't had time to investigate yet. 

I'm so glad you caught it early again and they aren't finding any active cancer anywhere else.  But geez, aren't you getting tired and pissed off about fighting this again.  That's how I'm feeling today!  Take care. 

Laura

Erica3681

Kathy and Laura,

Even though Tamoxifen and Femara (or other AI) aren't thought of this way, they are also a kind of chemotherapy (of the hormonal variety). Some studies have suggested that for ER+ post-menopausal women, aromatase inhibitors (AIs) like Femara may be more effective than chemo. I'm not aware of particular studies with Tamoxifen, but for pre-menopausal women, it's a very powerful drug that does reduce recurrence significantly.

Barbara

(I had a bilateral mastectomy after diagnosis of a second primary bc. The first bc was in my right breast, the second one discovered in my left breast three years later. I know how awful it is to go through this twice.)

Mel-4

Your post is really making me think.  I had a bilateral mastectomy on March 12, 2008 age 42. I had DCIS in my left breast and decided due to my family history to have the bilateral.  Because my lymph nodes on both sides were clear I had no chemo or radiation.  I felt good about all this but now I am starting to wonder about it.  I really thought I was safe since I had done the most I could do.  Did your doctor request the PET scan or was this done after a problem was found?

slmdavidson

Hi Mel-4

The PET Scan was done just as precautionary after my second diagnosis which was invasive ductal carcinoma.  I had a recurrence under the skin about 15 months after my mastectomy (for DCIS).  The Onc couldn't say if it was a metastasis to the skin or just a few cells left behind.  Both times I had lymph nodes out, they were clear.  They do say that most recurrences after mastectomies are found early since they are pretty obvious lumps right under the skin so my advice is to continue to do self exams.  My Onc also said it was VERY rare to have invasive disease after having only DCIS so you can take some comfort in that. 

Hope that helps. 

Take care, Laura

tos

1cathi,

Thank you so much for the information from Dr. Newman.  I had the honor of meeting her just a couple of weeks ago and she is amazing.  I could listen to her speak for hours.

I too was shocked at the high numbers she quoted re after mastectomy.

kathy55

Hi Laura,

  Thanks for your response.  I haven't started the Femara yet (waiting on the ins).  I was wondering if you knew why some Drs rec CT scans and others rec PET scans.  You are right I am getting very tired of thinking that I'm going to be OK (10 yrs is a long time), only to have the rug pulled out from under me.  This forum has been a great help to me.  Some of the other ones have been down right disturbing.  A lot of negativity out there.  It's so hard to stay positive, but you can't ever give up.  I can't stress how important it is for every one to continue to  do your self exams.  I caught my reoccurances myself while they were very small.  We have to take care of ourselves!!  Kathy  

Mykidsmom

Kathy - I am still at the TE stage, but will be getting my implants next month. As for self exams, I am so tight that I don't think anything could hide from me right now. But I will certainly do my BSEs after things calm down a bit. I also plan on going back to my oncologist and getting a follow-up plan. I am sending cyber hugs your way! take care. - Jean

nana2thegrls

Geez, I never thought I would be here again... Silly Silly me...I had bilateral in 2004 no recon until 3 years later... IDC left.. mutifocal right..sentinel node neg. 4 A/C's  followed by tamoxifin/aremidex .Opted for double tram flap (plenty of belly fat)... left side was a success.. right side failed after a 17 hour surgery.. So now I have a belly boob and an implant on the right. I have nercrosis/ scar tissue on my left breast where they attached the main vessels, but just recently I found a lump, just about where I had my initial tumor.. but closer to the surface then the first one.. I see the oncologist tomorrow (monday) .. I just have a sick feeling this is it again!!! I have been trying to think positive but it is hard the second time around... Iam going to insist they remove it with and excisional biopsy.. dont want to take any chances..

Mykidsmom

Nana - Oh my goodness, I am SO SORRY!!!!!!!!!!!!! I hope that it is nothing, especially w/ all that you have gone through. I will be sending warm and healthy soft hugs your way. Take care and please let us know how things go. Best wishes tomorrow!!!!!!!!!!!! - Jean

nana2thegrls

I have an ultra sound and biopsy tomorrow morning... They think it might be a lymph node. I will know the results next Monday.. Need Prayers!!!!

Mykidsmom

Nana - I am sending soft hugs and many prayers your way. Please know that I care!! - Jean

slmdavidson

Nana

I'm praying for you too.  You've already been through so much!!!!  I'm praying for you - please do keep us informed!

Laura

veggie4me

I had a bilateral mastectomy and chemo.  4 months after finishing chemo I had 5 new tumors.  After surgery and removing all the lymph nodes this time (which had been clear originally), I did more chemo and radiation.  The last day of radiation, they found a new tumor and I went back into radiation.  I've been treatment free and cancer free now for 14 months.  WAHOO!

Mykidsmom

Veggie4me - I am so sorry you went through all that, but psyched that you have been free to treatment and ca fo rso long! Way to go sister!!!!!!!!!!!!!

Northstar

I had a bilateral skin-sparing mastectomy for ILC in Sept., '08.  My rad onc is very, very conservative and felt that having rads would greatly increase my chances of long-term survival, by "cleaning up" any remaining cells in the chest wall, clavicle, and axilla.   My PS (I had immediate reconstruction with expanders)  wasn't excited about this, thought the surgery was enough, but felt it was my decision.  I didn't have chemo because of a low Oncotype score, but wanted to do everything I could to minimize the risk of recurrence.  After the rads were over, I started on tamoxifen.    I really think that even with the BLM, rads are important to have.  I've heard it increases your chances of survival quite a bit (can't remember the percentage exactly, but as I recall, it was in the teens).   It was a major pain (that's about all I got done for a couple of months), but I'm glad I did it.

scutles

I totally under stand...I went today for surgery....found lumps in my scar tissue..waiting for results..I had chemo rads and bilateral mastectomy with tram flap... I wish you all the best.

1) I was diagnosed at age 32 (2yrs ago 8/2004)
2) There was no family history of BC but lung and bone cancer
3) I was diagnosed as a stage IIB Invasive Ductal carcinoma
Tumor was 5cm, grade 3 with necrosis, Bloom score 9,
Lymphovascular invasion present, Triple Negative and my ki-67 proliferation marker is 97%
4) I had lumpectomy, Chemo, 35 rads with 5 boosts, then 11/04 bilateral mastectomy, 3/06 tram flap reconstruction. 


Tracey in FLORIDA

Kailahi

Whoa .... that is a shocker about recurrence after mastectomy.

I just found out last Monday I have another recurrence.     In May 2004 I had a lumpectomy on my right breast and did not do any other treatment.    Stage 1.    After recurrence 5/13/08 and Dx my onc wanted me to take arimidex (my oncotype DX test was a 16) but I did not do it because my estrogen levels were very low and I was having some bone loss.   I had understood 2-3% recurrence rate.   

Ah well.    Here I go again.    I felt a very small lump in same troublesome area ... saw onc for regular checkup 2 weeks later, ultrasound, biopsy.   Saw my breast surgeon Friday and she said there were actually 3 small lumps (one feels like it is attached to the chest muscle) and she said that whole area (and a hand's length/width) had some granular areas plus I had some suspicious skin discoloration so she thinks there is more going on than we can see.   Bone scan, CT scan fine.   Her advice is to go for aggressive chemo and not do the radical surgery of muscle, etc    because I would still need chemo and/or rads anyway.    It would be easy to see if cocktail is working if the tumor shrinks.  So, after all my avoidance of everything but surgery ... resigned to getting the big guns out.

I really like my oncologist but he handles all cancers and is very busy.   There are only 2 oncs for a population of about 180k.    So seriously thinking of going to San Diego CA to the cancer center there.    I have friends and family there.   Being away from home for months will be challenging but having breast cancer specialists and a team approach sounds comforting.

mmarsh

Hi Ladies,

I had a Bi Lateral in December 5th, 2008, with Alloderm & Expanders.

Just had my Exchange surgery for Permanent Implants June 4th, 2009.

So far so good.  I am feeling strong, I am much happier with the lighter, better shaped foobs.

I can't seem to stay happy long.  It has been a rough 15 months since Diagnosed, and I can't get my mind off reoccurance.

Mykidsmom

MMarsh - We are about on the same schedule. I am glad that you like your foobs, I am so sorry that you are having such a hard time. Gentle hugs are going your way my dear!!!!

Sea_nymph

Hi Laura, I had a large mass of DCIS in 2007 and a bilateral mastectomy with nothing else. I just had 2mm of IDC stage I recur 2 years later.... I'm curious what did you end up deciding treatment wise? My oncologist is recommending chemo, radiation, and tamoxifen. Did you end up doing chemo? I had a PET/CT scan that was negative. Apparently, DCIS can have occult microinvasion at the time of removal that goes undiagnosed in pathology reports. So, if you have IDC recur, your DCIS tumor likely had an invasive component, at least this is what my doctor thinks. I think I will get all three forms of treatment. ? I wonder why you are only recommended radiation and tamoifen? IDC recurrence after DCIS could range from stage I to stage IV. The whole body scans only detect metastasized cancer greater than or equal to 5mm in size.