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Confession Time

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Kellyless View Drop Down
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    Posted: Nov 17 2016 at 1:45pm
I'm not a new member, but I do have something new....I've been dealing with a recurrence since I was diagnosed in June.  It's a very RARE situation, so rare there are no studies on my particular situation because there are far too few instances to study.  I've been very afraid that it would scare ladies here whose stats matched mine from 7 years ago, no matter how much I stress it is most definitely a RARE occurrence.  I've also been quite wrapped up in my treatment and..........well, those are all my excuses, so here goes.  I know some of you will be curious of the details, and I will tell you _anything_ you want to know, if I have an answer. 

In late May I was sure that I "felt something" in the same breast and same location as the first time.  I have a lot of scar tissue in the breast, from the lumpectomy, a nasty post surgical infection and radiation so there's a lot to feel there all the time.  But this felt different and I was immediately sure it had returned.  An emergency Mammogram and Ultrasound showed NOTHING anywhere, especially where I thought I felt something.  My surgical oncologist has left my facility, so I was assigned a new one to meet with.  She spent a long time listening and checking me out.  She said she felt it was nothing as well, but she takes seriously a cancer survivor that feels something new is going on, so she ordered a breast MRI with contrast.  A small spot lit up.  It was at the same location -ish - as last time, far too small and deep for me to have actually "felt" it, but there it was.  Biopsy confirmed it was a recurrence, with pretty much the exact same stats as last time - Grade 3, TNBC etc.  It was just under the cut off size to make me Stage 1 - I was 2b last time.  I went thru the whole testing rounds, bone scan, cat scan, etc and a PET scan this time (turns out with a recurrence insurance pays for a PET).  All came back negative.  My medical oncologist has left too, so I was assigned another. She confirmed there are NO protocols for a recurrence solely within a Fully Treated Breast - TNBC with the AC plus T treatment and max radiation - Very Very rare indeed.  Obviously I needed chemo, we'd have to make up a regimen, as doing the same as previous a 2nd time for a Stage 1 tumor is not a good idea. 
At this point my husband and I were confused and pretty scared.  When I was diagnosed I had reached out to Donna and Mainy here and they were So Helpful, I get teary thinking back to it.  They both said I needed to contact Steve, SagePatientAdvocate here.  I did just that, and he went to work on getting me a 2nd opinion appointment with a Dr. he knows at MD Anderson.  I needed that appointment FAST - I needed to start chemo FAST and I was not comfortable with just doing what this one Dr. recommended.  Steve performed a miracle and got me the appointment in the nick of time.  Not only that, but Steve happened to be at MD Anderson that day and he went with my husband and I to the appointment.  We LOVE Steve, and luckily loved the Dr. as well.  My husband and I both felt much better with his chemo plan:  Carboplatin 4x every 21 days, Taxol weekly 12 times (he felt the Taxol worked last time, why not?)  he wanted me to get an ultrasound before I left there as a baseline measurement, then return 1/2 way thru chemo to do it again and see if it was working.  Then return after that treatment was completed to see if it looks like PCR - if not, I'd have the option to do more chemo before surgery (Double Mastectomy), because if I don't have PCR I'll need more chemo after surgery.  So - Plan Set. 
That was August 4, I started chemo 8/8.  It's been tough - I was hospitalized week 2 very sick.  I stopped working altogether 1/2 way thru treatment, I was just too unwell, weak and fatigued.  1/2 way thru it had reduced by 66% . My final chemo was 10/24 - at MDA 10/27 ultrasound showed it had reduced another 20%..... what was showing up might be scar/necrosis/tumor bed or it might be cancer.  I could move on to some more chemo or move on to surgery.  We were........ confused.  I was Very Weak and Very Sick at this point (Steve was at MDA and joined us again, he helped me face how sick and in pain I was - He is my guardian angel!) I spoke with my local Medical Oncologist after we returned and she said what I was already feeling - I'd be in the hospital within a week if I did more chemo.  And what if I was already PCR?  I next spoke to my surgical oncologist's office and they ordered another MRI with contrast.  It was read by the radiologist that had done my biopsy - she and I have become friendly - she called me very excited with the results:  NOTHING lit up, the spot where my cancer was "didn't even faintly glow!"  she says.  So.  My surgery date is 11/30, I'm having a double mastectomy.  And after MUCH soul searching and meeting with an amazing plastic surgeon I'm having expanders put in for reconstruction.  Because of the radiation I had the first time I cannot do implants, so it's a DIEP flap reconstruction for me.  I am.............simply terrified of these surgeries, I'm sure some of y'all can relate.  I am slowly recovering from chemo.  Slowly being the correct word, it's been tedious and frustrating.  But I am getting better. 
Do I believe I'll get PCR from the surgery pathology?  I know the odds are against it, but one can hope. The thought of doing chemo again is a very tough thought.  But I'm resigned to doing whatever I have to do, to get the best chance of long term survival.  Again.

The components of my situation that make it rare are two fold.  A recurrence after 7 years is extremely rare.  Both doctors say the few times they see that it's usually in a woman with one of the known genetic mutations that chose not to have mastectomy.  I've tested negative for every cancer mutation that is known.  The 2nd is that it's a recurrence solely within the treated breast.  It's hard to feel "Lucky" after the last 4+ months, but I guess lucky I am.  In a way? Lucky I had Dr.'s that believe in a cancer survivors intuition and acted on it.  Lucky it was small and hadn't spread.

I want to stress this again, especially to those women who had a lumpectomy and a same or similar treatment to what I had 7 years ago - this is RARE RARE RARE.  Your odds of survival are indeed the same as mastectomy, because this just doesn't happen!  Nobody is considering studying treatment for my situation because there aren't the patients to study! Because it's RARE.  Please try not let this scare you.  But do listen to your intuition, and find a Dr. that respects it as well.  And second opinions save lives!  And Lastly, we are incredibly lucky to have Donna and Mainy here keeping us up to date on all the news, all the latest information about TNBC all these years.  We are so lucky to have as our Guardian Angel Steve, one of the most amazing people I've ever met in my life.  We've made him an honorary member of our family now, whether he likes it or not :)
If you have questions fire away, I'll return here later to answer 'em if you've got 'em.  And you ladies that have been thru mastectomy and those that had DIEP flap?  I'd LOVE advice, stories etc. that can help me thru this process.  If I'm PCR I'll have the flap surgery in 3 months, if I'm not I'll do chemo, recover from that then have the 2nd surgery - whenever the hell that is next year :(
Thanks for listening!   Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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luzmia View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote luzmia Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2016 at 7:18pm
< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">I'm sorry Kelly that you have to endure this painful path once again.
It's been a year and 1 month since my sister finished her treatment and she still has pain on the same area where the 1.9 cm tumor was removed.  On 11/14 she had her 2nd- 6 month follow up with her Onco and once again I told her about the pain she feels on the same spot were the surgery was done ( she had a mastectomy) she touched the area and said that she did not feel a growth or thickening on the spot, she does not believe this to be a re-occurrence of the cancer- But how can she be sure if she did not order a Pet or MRI.  My sis was ref to see her plastic surgeon to follow up on the possibility that the pain may be due to the expander.  I wanted to ask you if you had ANY pain or discomfort on the area? 
Thank you,  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2016 at 12:04am
kellyless
 
thanks for the update.  When I read your post that after 7 years you had a recurrence I admit it did scare me for myself.  And feel very sorry for you.  Its not supposed to come back after 5 years.  Even Stanford triple neg  doc said it wouldn't (obviously you cant say for sure but not likely).  I am 6 and a half years out.  Im much better but still every ache and pain brings it all back.  So your post threw me quite a bit.  Didn't even get on for some time.  So thank you for the encouragement.  Especially when you are the one who needs the encouragement.  So incredibly thoughtful of you, and going through all you are going through to post that. 
My prayers are with you.  Keep strong.  You can make it. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2016 at 12:51am
Oh, Kelly, I can't tell you how sorry I am that you're having to deal with this again. 7 years! I can't believe it. I'm one of the women you referred to when you said you didn't want to frighten anyone who had similar stats. How thoughtful of you to think of others here while going through this for these last months. I've read thousands of posts on this forum, many of them yours, and I was so thankful that you still posted here being so far out from treatment. I have found solace many times in your words of encouragement to others, you are very helpful and kind. Thank God you were still being so vigilant and have once again caught it early! You ARE lucky, even though I can imagine it's ridiculously hard to fathom right now. Sending you my best positive vibes and cyber hugs, you got this! 

Nikki

DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2016 at 9:40am
Oh Kelly, ditto all of the above!  I am so sorry you are dealing with this, what a terrible shock.  And so sorry that the treatment has been so difficult.  Praying for a pCR for peace of mind for you, and successful surgeries!

It is true that your situation is very rare, but my neighbor had an exceptionally similar situation, and it is all working out well.  I hope this story gives you encouragement.  She was stage 2A TNBC 12 years ago.  She had a mastectomy (she is BRCA- and now knows she is negative for other known genes), but she chose mastectomy without radiation.  She did ACT chemo.  Then 7 years later, it surprisingly recurred along her mastectomy scar line (so, as you pointed out, it still appears that lumpectomy and mastectomy are comparable‚Ķ.this could have even happened with a mastectomy!).  It was luckily contained within her original breast cancer breast (a small spot of TNBC, also Stage 1 this time).  This time, she did more chemo (I think Taxotere instead of Taxol this time, and Cytoxan, if I am not mistaken), surgery to remove the spot, and radiation.  That was 5 years ago, and not a hint of anything returning.

I'm hoping for the absolute best for you.  Clearly you are brave, super-considerate, and have a great outlook, all of which will help you!

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2016 at 12:50pm
Kelly,

I ditto everything being said.  I'm so sorry for your recurrence, but admire your strength in which you've researched and took control of your care.  Yes, Steve is an angel to us!  I'm glad you are surrounded by great doctors and wishing you complete NED forever!  All of my oncologists have told me that the 5 year mark is good news for TNBC and that a recurrence after that timeframe is rare.  We know it can happen, but extremely very rare.  We must always be diligent like you were and if something doesn't seem right, to get it checked out.  

You are always so positive and supportive on these message boards, helping others even when going through your personal battle.  Sending you positive vibes and hugs that your healing continues and you get back to normal soon.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2017 at 9:39pm
Hello Kelly, it's been awhile since we've heard from you on the board so I was just wondering how you're doing and how your surgery, etc. turned out? Hoping everything is well Heart
  


Edited by AZNikki - Feb 28 2017 at 9:39pm
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2017 at 2:52pm
Thank you for this post.  I have a question.  I met with my plastic surgeon yesterday to discuss my options.  I am 1/2 way through chemo (4 cycles/21 days TC).  I am a stage 1a (no lymph and .6cm) very small.  If not for TN I would have had it easy.  Last chemo is scheduled for 3/27/17 then it's off to radiation.  Now, for the question, the PS said I could consider a double mastectomy eliminating the need for radiation.  I really don't want to go that route if at all possible.  I do not want major surgery, implants or fillers.  My lumpectomy left me lopsided (one size is a B and one size is a C) so my thought was to move forward with radiation (take care of everything medically) then have the C reduced down to the B and call it good.  I thought with TN, a lumpectomy had the same results (survival stats) as a double mastectomy so I opted for the less invasive surgery.  Am I wrong?  Should I move forward with a double to eliminate any chances of breast recurrence?  I am so confused and need help before I start radiation.  Any advise is really appreciated.

Thanks, Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2017 at 3:13pm
Hi Penny, it's my understanding that it's becoming more common for women with TN to do radiation whether they do lumpectomy OR mastectomy since it's such an aggressive, sneaky disease. I just saw my radiation oncologist last Monday for a check up and I can't tell you how glad I am that I hit this with everything they'd give me at the time. Also, all my Dr's say that a double mastectomy isn't necessary if your genetic testing is clear so that's why I chose lumpectomy with rads as well. I'd ask your MO their opinion rather than your plastic surgeon for sure, though. The choice is yours, of course, but I'd really advise you to do radiation regardless of what surgery you choose! Best of luck Heart
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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