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Author Topic: Post Transplant Cancer Scare... (and a cancer diagnosis)  (Read 2785 times)
Meinuk
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« on: February 06, 2014, 07:23:05 PM »

I have the unique perspective of having three different biopsies in three weeks.  All to rule out cancer.  Two were negative, and one was positive.

It all started with a routine physical.  Hey, I am 5 years out with my transplant, and aside from steroid induced cataracts, it has been perfect.  Then came a phone call last December.  My screening mammogram was abnormal, the clinic would need to see the films from my pre-transplant mammograms. I didn't really take them seriously.  I had no history of breast cancer in my family, I did self exams, and there were no lumps, there was no way that I could have cancer.  I told them that they could wait until after Christmas. 

Then the center sent me a letter - they were serious - there was a 1cm abnormality on my mammogram, and they needed to rule out malignancy ASAP. In January, I scheduled a follow up Mammogram.  The day I walked in to radiology, I knew that something was up because I was alone in the waiting room, and everyone was REALLY nice to me.  I didn't even have have to wait for my appointment (That terrified me - it's just not normal), and then after many, many, many "views" I was ushered in for an ultrasound. I hadn't planned for an ultrasound.  I was not prepared.  I know kidneys.  Aside form owning a pair of C cups, I know NOTHING about breasts. I was in uncharted waters.

The radiologist explained what she was looking for, and then she said it was time for a biopsy and a marker (a metal clip left after the biopsy to "mark" the abnormal tissue).  That was when Invasive Lobular Carcinoma was mentioned. I was terrified. I blamed the transplant drugs. I Googled chemotherapy and transplant. I updated my will. I didn't know how to even face the thought of a mastectomy. I have never been so scared in my life. And I didn't know how to talk to people about it.  I e-mailed my Rockstar,  my "go to" guy for support, and I decided that I would write about it. He agreed. My family freaked and said "You better not put your Mammogram on Facebook", his reply "Save it for a blog post".  So here I am on IHD writing about it.

The day of my stereotactic biopsy, I was resigned to treat cancer like I treated kidney failure. Face it, fix it as well as I can, and live. My OB/GYN was amazing as she summed up what was happening.  No matter what, it is early.  1cm is the smallest that can be detected.  Stage 0, with a 98% survival rate.  And clinics over screen for breast cancer.  80% of all breast biopsies are negative for cancer.  If 100% were positive, they would not be doing their job right. I felt a bit better after speaking with my OB/GYN. Then she and I discussed the uterine polyps that she had removed and sent off to pathology the week prior.  Those too were benign, but I've had polyps before, and I really wasn't worried.  With polycystic disease, I am never surprised when cysts, aneurisms or polyps appear, I just figure that they go with the territory of living so long with a deadly disease. After all, my kidneys failed almost a decade ago, I am living wayyy past my "sell by" date.

This Tuesday, I got the call.  It's not cancer.  It is atypical lobular hyperplasia.  It makes me at risk for breast cancer, and I'll have to have a mammogram every six months, but I don't have breast cancer.

On the same day I found out that I didn't have Breast Cancer, I went to my dermatologist to have my semi annual post transplant skin check. She removed a growth from the bridge of my nose.  In November, I was reading on my iPad in bed, and I was wearing my glasses.  I dropped the iPad on my face, and my glasses cut into the bridge of my nose.  It wasn't healing.  My dermatologist excised the scabby tissue.  Did you know that Basel Cell carcinoma can grow from a wound? 

Five years after my transplant, I had my first skin cancer lesion removed. I was high risk even before the transplant, now it is going to be hypervigilent sunscreen for the rest of my life. But I really wasn't that phased.  When I got back to work that day, with the band-aid on my nose, my co workers asked "What happened?" all I could say was "I don't have breast cancer".

I'll update this post with "Adventures in Skin Cancer", if any more lesions develop.

The moral of my story?  It's all about perspective.  Once you've survived kidney failure, there are other medical issues that can knock the wind out of your sails, but you keep on plugging away, and you choose to live. Yeah, this week, I was diagnosed with Basel Cell Carcinoma on my nose.  A common occurrence when you are on immunosuppressives after a transplant. But with early detection, it is easier to deal with it.  And for me, I'm just happy that it's not breast cancer.
« Last Edit: February 06, 2014, 07:35:50 PM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
okarol
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« Reply #1 on: February 06, 2014, 09:19:10 PM »

I am glad too!  :2thumbsup; :2thumbsup; :2thumbsup;
Love ya!  :-*
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #2 on: February 06, 2014, 10:28:50 PM »

Thank you so much for this post.  I am glad you don't have breast cancer (well, that's an understatement), and I will be very interested to read more about your "Adventures in Skin Cancer" if there are, in fact, any.  I hope you won't ever have to create such a thread.

Perspective.  Yes, you are right.  It's all about perspective.  I'm learning about that.  Thank you.

Be well.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cariad
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« Reply #3 on: February 07, 2014, 04:37:31 AM »

Wow. I could relate to every word of this, especially the bit where you talk about the terror of serious non-kidney issues. Spooky how similar our experiences are, as I went through the breast cancer screening (and like you, I just knew it would come to nothing, and lucky for me they determined it was a false alarm immediately) and I should really get this mark on my nose checked. That one I suspect could be something as I have always sought as much time in the sun as possible.

Superb news that the cancer you did have was treatable and that you retain your fighting spirit in the face of any disease that dares come to call. Keep it up!  :boxing;  :cheer:
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galvo
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« Reply #4 on: February 07, 2014, 08:53:54 PM »

Well! An inspiring and cautionary tale! Keep on keeping on!!
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Galvo
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« Reply #5 on: February 08, 2014, 05:17:27 AM »

I went through the whole breast "abnormality" from original mammogram to extream "ouch" mammogram to ultrasound, to biopsy clip to open excision biopsy to .... "oooop it is nothing".   I should have been happy but I was PISSED.  I think it is a scam and I'll never do it again.

I've also had the Basel Cell Carcinoma and they just dig deeper until they get it all.  The nose is where you can't dig very far so you may need laser or something. 

Deep Breath.... you are doing fine.  Don't let your ipad hit you in the face!    :rofl; 
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