Recurrence after bilat mastectomy?

ctinas

Laura,

I'm so sorry it dosn't seem fair. LN were involved with my diagnosis so radiation was a must. I also had 6 chemo treatments and a year of herceptin. But my Dr. insited on a pET scan after my BMX which found another lymph node in my collar bone. Have you had a PET scan.

I wish you all the luck and my prayers are with you.

Tina

my2boys

Thanks Pamelajo,

It looks like we are on the same regimen.  I had my 3rd A/C last week and I have one left.  Then 12 Taxol and then rads. 

LOVE the line...We caught it....it didn't catch us!  Thanks.

cookiegal

This is off topic at this point but earlier in the thread you mentioned PEM's.

I am all about the PEM. My MRI picked up a ghost second tumor that was not there, the PEM counter indicated it. I wonder if I might have been scheduled for a mast, if I had not had the PEM.

My oncologist is not as enthusiastic, he considers them experimential, but I would rather have an accurate experiment, than a wrong standard treatment.

tobyj

Diagnosed at 40yr.  2mm LCIS ER+ Sept 2008.  Bilateral Mast March 2009.  Recon. 7th surgery Feb 2010.  New small lump(s) in same area as 'C' lump.  Concerned. Worst ultrasound in my history today - tech quickly dismissed as "benign" (not a doctor), yet kept quickly finding more 'cysts' on both breasts.  Did not focus on area of concern enough.  I thought I saw same shadow/smudge not defined area as 2008.  Same feeling that I had when "cyst" turned out to be cancer - 1 of the 5% at 40yr old.  How do I make sure with real testing?  MRI?  Mammo?  PEM?  Please advise as I have same feeling I had when they thought original was just a "cyst" 

Roberta2

OK i have to chime in...

I had stage 0 dcis grade 3, no lymphnodes and no microinvasion in 2003 7 years ago. had three lumpectomies to obtan clear margins.  The DCIS was strictly contained in the milk ducts but after the three surgieries no clear margins.  Had to do right mastectomy but i chose to do double.

April 20107 years later-- found lump inside right side breast. Doc said probably scar tissue because chance of recurrence with early stage cancer and mastectomy was definietly less than 1%. The lump was attached to the skin and chest muscle.  Doc wanted to see what type of cancer and try to do chemo to shrink first.  First test, fine needle aspiration for the fluid only, showed yes cancer.  Second test, core  needle biopsy for 5 tissue sample showed benign (this is the more reliable of the two test).  This completely thru my surgeron off.  He spoke with tumor board and everyone agreed they were baffled and he should do the surgery and take the lump out.

Yes it was cancer again DCIS with 1.8 CM of IDC with lymphatic invasion but no lymphnodes involved.  Sent to cancer doc, she said I definietly was not textbook case.  She ordered the oncotype test and came back at 33 with a 22% chance of recurrence.  This puts me in the low end of the high risk.  Started first T&C chemo yesterday.

 In my poor head, all I thought great I made it past the 5 year mark which in therory you should be further aware from the chances of this comong back but apparently not.

AND they are unable to tell me that this is definietly a recurrance because I have an invasive component this time so it could be a new breast cancer in the same breast.  But none of the doctors can say either way with any confidence.

Roberta2

OK i have to chime in...

I had stage 0 dcis grade 3, no lymphnodes and no microinvasion in 2003 7 years ago. had three lumpectomies to obtan clear margins.  The DCIS was strictly contained in the milk ducts but after the three surgieries no clear margins.  Had to do right mastectomy but i chose to do double.

April 20107 years later-- found lump inside right side breast. Doc said probably scar tissue because chance of recurrence with early stage cancer and mastectomy was definietly less than 1%. The lump was attached to the skin and chest muscle.  Doc wanted to see what type of cancer and try to do chemo to shrink first.  First test, fine needle aspiration for the fluid only, showed yes cancer.  Second test, core  needle biopsy for 5 tissue sample showed benign (this is the more reliable of the two test).  This completely thru my surgeron off.  He spoke with tumor board and everyone agreed they were baffled and he should do the surgery and take the lump out.

Yes it was cancer again DCIS with 1.8 CM of IDC with lymphatic invasion but no lymphnodes involved.  Sent to cancer doc, she said I definietly was not textbook case.  She ordered the oncotype test and came back at 33 with a 22% chance of recurrence.  This puts me in the low end of the high risk.  Started first T&C chemo yesterday.

 In my poor head, all I thought great I made it past the 5 year mark which in therory you should be further aware from the chances of this comong back but apparently not.

AND they are unable to tell me that this is definietly a recurrance because I have an invasive component this time so it could be a new breast cancer in the same breast.  But none of the doctors can say either way with any confidence.

kittycat

Roberta, sounds like you went through the same thing as me.  I was also re-diagnosed in April 2010, only 8 months after having a bmx.  I also had DCIS the 1st time and IDC with lymphatic invasion the 2nd time.  So, I'm doing AC/T. Just finished 2 out of 8 rounds so far. 

Ladyredlocks

Well I'm here with you too.  Had my bi lateral Oct 08/reconstructed April 09.  Like Roberta2 I had 0 stage DCIS, stage 3, no nodes or invasions.  Been getting back to my life working hard to get back strength and range of motion - gardening/yoga/cycling/babysitting Grandbabies full time.  This morning I found a lump on the seam line on the left.  It is about the size of a mustard seed - or the little round glass head of a sewing pin.    

I am terrified!!!

I thought I was done with this.  I was getting back to my life.  I have finally stopped talking about cancer.  God I hate this disease!!!

balsie

Ladyredlocks~  I just went through this...same size as yours, went in and they did an ultra sound and took it out right away that same day.  It ended up to be scar tissue...don't worry ( I know easier said than done) until you go in and actually find out it is something.  I do know how you feel but make and appt. and have it looked at. I wish you all the best.  Update us...

thinking positive thoughts for you

Balsie 

MaryMomOF3Boys

First of all, I am so sorry that you had to deal with breast cancer a 2nd time....let alone the first time.  Secondly, I am new to this forum so i apologize if i am not "posting" my topic in the right spot.  I didnt know how to start a new topic.  I see that you posted this is January, so i am hoping for the best for you now and hope all is going well.Next, i have a question and dont even know if anyone will see this....i am hoping to hear from somone. 

I was dx with Triple Neg. Breast cancer in feb 2009, started chemo in march, and finished chemo in sept. 2009.  I jsut had my 3rd "3 month" check up, and have a lump under my arm.  I need to meet with surgeon on monday to discuss options for biopsy (most likely a surgical biopsy to remove it)  The doctor said it could be scar tissue from surgeries....couldnt tell from ultra sound.  Has this happend with anyone out there....whether it was benign or malignant....i would love to here from you...just feeling alone and "we gals": must stick together !  hee hee!  Thanks ahead of time for your response.Mary in Montana  mom of 3 boys.............................

kittycat

Good luck ladyredlocks and mary.  I hope both of you get benign results!  (((hugs)))

Shirlann

Hi sisters, this problem is very rare, which is small comfort, but the truth is you cannot remove ALL the breast tissue, it is under the arm, partly up the shoulder, and while a double mast is a good thing for women who need this, it does not completely remove the risk of another cancer or a recurrence.  It can happen in the scar, the chest wall, etc.

You have my deepest heartfelt sympathy, this dang beast!  But if this is just a recurrence, get the "just", you are in no more danger than you were the first time, you just get to do the whole rigamarole over again.

Gentle hugs, Shirlann

jblcsw10

I appreciate this thread. I am researching in an effort to make the best decision about my tx. I had DCIS in 2001, lumpectomy & rad, told 1% chance of cancer coming back. This year, 9 years later, it came back, in the same area, IDC this time. 6 weeks out now from BMX and trying to figure out next steps. First oncologist I saw said no chemo, maybe tam/AI. I am waiting results of the oncotype dx test and will then get a 2nd opinion. Like many of you, 1% doesn't mean anything to me. The first oncologist I saw apparently hadn't even reviewed my records because he was unaware that I had DCIS 9 years ago!!! Can you imagine. We really have to do our research, and make decisions for ourselves, and listen to our "gut". Thank you all for sharing in this thread - it helps me make my decisions.

kmccraw423

My heartfelt sympathies to those of you who have had to deal with breast cancer more than once.  You have, however, scared the bejesus out of me.  When my DCIS, Stage 0 was diagnosed I elected double mx because I did not want to worry about breast cancer again - oops!  Now I am thinking of getting a scan - my mx was in December 2008.  BTW, under careful scrutiny by the pathologist, there was DCIS in the "good" breast.

Jane ... it would be so nice to turn this whole thing over a someone whose job it is like with a medical degree but you are so right when you say if you want it done you will have to do it yourself.  Lord, have mercy on all of us.

hd1017

Hi, all,

I posted over in the recurrence threads but have been told by my onc my new dx is not a recurrence but a new primary. IDC. Have a sentinel node biopsy/ re-excision to get clear margins scheduled for Aug. 24th. No treatment plan yet. Will be hanging out on these boards while I wait! 

I was originally dx in 2008 with DCIS and IDC. Had bimx, then implant exchange. Was Her2+ so have been taking tamoxifen for two years.  

Best wishes to everyone here, those undergoing treatment, and those giving support. You are all amazing!

Helen 

kellyj

Hi Helen,

That is interesting that your tumor is considered a new primary and not a recurrence. Got me thinking, how do they decide this?  Is it in the opposite breast?  When my second tumor was sent to the pathologist my onc said that it can also change characteristics.  Just curious what your onc thought.

Thanks, Kelly

hd1017

Kelly, 

Yes. You are correct. Last time the IDC was in the left breast. Only DCIS in the right. This new lump was in what little soft tissue remains of the right breast. It was removed on the 29th of July, but they still haven't gotten the complete report, so don't know receptor status yet. He seemed to think I'll be receptor negative because the tamox didn't prevent this cancer from growing.

Anyone know the efficacy rate of tamox?

Thanks,

Helen 

kittycat

My 2nd diagnosis was also called a new primary and not a recurrence (1st time I had DCIS with widely negative margins).  The new cancer was in a similar area to where my old cancer was found.  Still called a new primary. 

Leah_S

Helen, I don't have the statistical rates for efficacy of tamox, but no drug is 100%. I was on tamox and developed bone mets.

Best of luck.

Leah

Anonymous

Have not had a return of BC but am looking ahead and trying to be thorough to prevent a return.  Had bilateral mastectomy on 4/14/10 after Chemo and am still continuing Herceptin through year end.  I have been told to be sure to request a body scan when I am finished.  Am curious to know about Scans after the completion of Chemo & Herceptin.  Are there different type of scans?  Anyone?   

o2bhealthy

LilyLou - I am so glad you posted your questions. 

I had my last Herceptin in July and am meeting with my onc on the 18th of August. 

I have worked myself into a tizzy over this appointment because in the past when I asked 'How do I know when I am NED?'  I was told, 'You were NED after your BMX'. 

REALLLLY???!!!!  Then why did I just go through chemo hell and a year of Herceptin??? 

When I asked about 'What is next? Scan's? ect..." I was told "We only do scans if you are symptomatic."  I was not symptomatic with my first dx!!!!  

I am supposed to meet with my onc every 3/6 months for the next 3 years with alternating mammo/MRI each year.  Mammo??? I had a BMX, all the mammo will show is skin and implant!  What about chest wall?  What about Lymphnodes? 

I don't know how to push for scan's and better follow up care because I don't know how to ask or what to ask.  I don't have an advocate who can help me and since I live in such a rural area I am worried about pissing off the only onc in the area.  I have always been so taken aback by the 'because I say so' attitude that I really haven't responded well when I get these 'pat' answers and am now at a loss on how to proceed and stand my ground.  All I know is I NEED to know that, right now at this moment in time, I am NED or not...I cannot move forward with this constant worry and doubt in the back of my mind.

Any suggestions???

hd1017

ivorymom, 

I can think of one perfect thing. Love. It's what gets me up each day to travel through this imperfect world!  But I know you meant tamox, and I know there's no sure thing. Just got me wondering if I should have been treated more aggressively first go around. Not that a bimx isn't aggressive. 

Interesting that your cancers were both ER+. Mine were too. I just found out yesterday, and was surprised because my onc seemed pretty sure I'd be negative this time since tamox didn't work! So, how were you treated the second time? Are you through treatment? 

All the best,

Helen 

Anonymous

o2behealthy - I'm not very good about being aggressive when talking to my Drs either.  Every time I go for Herceptin, they do blood tests and then I see my Oncologist which is good because I can accumulate questions each 3 weeks.  Last time I asked about a scan and was also told only if symptomatic.  ??  Once you are symptomatic isn't it a little late when it could have been caught earlier?  I am wondering if this is an insurance thing & something they don't want to pay for ??  I continue Herceptin till year end so I have time to bring the subject up again but wanted to have more info on the types of scans and so forth.  

I don't understand how they do a Mammogram once you have had a Bmx ??  I can see an MRI and realize there is still breast tissue to be checked so this is good but a Mammogram??? 

Anonymous

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crazylifex3

LilyLou,

They don't do mammos after a bilateral, well at least with me they didnt. My Onc told me that they wait and see how you feel. I personally told her that that was a pretty shitty way to have to live... 6 years out and I go in for surgery on Sept. 15th. I found bumps in my mastectomy scar and they did an ultrasound cuz I can't have an MRI because of a heart attack and a stent in place. The ultrasound showed a BIRADS category of 5! I'm just hoping that it hasnt spread.........

vanderlady

Nikki -- Did you find the nodules?  How big were they?  What a shock that must have been for you. I try to be a positive person and move forward but I worry about things like this. 

Anonymous

crazylifex3 - How awful for you!  I am so sorry and really hope the surgery on the 15th will get it and it hasn't spread.  Your first time around sounds like a nightmare with the heart problems.  Thanks for the info on mammos after bmx.  Am sending good thoughts and well wishes your way.

kittycat

crazylifex3 - why are they waiting until Sept 15th to do the surgery???  When they found lumps on me (well actually I found them), I had surgery just a few DAYS after my ultrasound!  When I had positive margins, they performed surgery again in a few DAYS after my path report came back.  I hope you have a benign result!!!

I was told that I would get an MRI every year after my bmx.  Too bad I got BC 8 months after surgery!  Anyway, I would think that if you couldn't have an MRI, they would do an ultrasound on a yearly (if not every 6 month) basis.  Ughhh.....  Now that I have had BC twice everyone is looking at me closer.  Even my dermatologist wants to see me every 4 months to check my moles. 

o2bhealthy

LilyLou - I met with my onc and she agreed that after my first post tx mammo, I will not need any more, just an annual MRI.   The reasoning being that now that we know there is less then 5% tissue remaining, mammo's won't show much more then the implants and the MRI would be more productive.  For this I am grateful.   My first MRI will be in Nov.  I will meet with my onc twice a year for basic labs and a physical exam unless I become symptomatic. 

It is a little scary after a year of constant doctors and treatments but I guess it is the norm.

My DH and I won an on going battle with the onc...I have LE in both arms (mild in the Left non cancer side but LE none the less).  I had asked that once my port is removed to have a standing order for foot draws so that I can protect my arms from LE flares.  My onc shut me down and refused my request.  Of course I was so upset I could not think straight and just went home and had a pity party.  Well my DH called and spoke with one of the nurses who went to bat for me and know I have standing orders for foot draw's with the understanding that if they cannot draw from the foot we will have to use the left arm.  VICTORY!!!

crazylifex3

Hi Kittycat,

Well i went to a new oncologist todat who finally had blood drawn for a tumor maker. I think they are waiting until the 15th because of the plastic surgeon. He is crammed until October, but fit me inhis schedule i guess. I have implants in and they will pop because my flaps are extremely thin. after my BMX. Thanks for the support. I'm still a nervous wreck, but at least i will have my CT scan and bone scan before my surgery and all my results will be back all at once!