DIEP 2014

Wishing the new DIEP ladies, a quick recovery.  

I called the genetics clinic at Credit Valley Hospital to update them that I have been diagnosed with a new Primary bc.  They had said back in November 2013 when I went for genetics counselling and my older sister went for the results of her testing that I was not eligible due to their criteria.  Three immediate family members having bc and not been tested.  As there was only myself and an aunt left to be tested they said I had to wait until another family member was diagnosed.  These rules are absolutely crazy given my strong family history.  Anyways....they now say that I can get the testing due to this new breast cancer diagnosis.  She still said that the chances of me having the mutuation were slim as my other two sisters didnt have it.  I, however, belong to two separate private Facebook groups...one is for DIEP flap and the other one is Prophylatic Masectomies, I posed the question on there asking if others have had immediate family members test negative and then some come back positive.  Bingo....several said they had a few sisters test negative, a brother positive and then themselves positive....so I know now that the genetist is not entirely correct in her thinking.

I told her I wanted the test done, she is writing up the requisition and I will head down to the hospital to get bloodwork done at my convenience, no appt necessary.  It will take 2 months from test date to get results back.

I always found out that Triple Negative breast cancer is often associated with having the BRCA1 gene.  I mentioned this to her and she said usually only in women under 40. I dont think I am "the usual case scenario".  The chances of being diagnosed with bc under age 45 is 25% - I got it, chances of being diagnosed with Triple Negative Breast Cancer are 15-20% - I got it. Its especially strange since my first breast cancer was estrogen positive.  I dont think breast cancer has any rhyme or reason or plays by the "normal rules".

Michele

Curly, stay on those genetics people if that is what you want.  They keep hounding me to take the test, and I asked my family what they wanted too, and they don't want to know.  So, I chose not have the test.  Bascially, I would have done nothing different if I had tested positive.  I would have still had the bmx.  But, later I found out that you can pass cancer on to males, and I asked my son, and he wants to know.  So, I am reconsidering. 

kelley, sorry you are dealing with this crap. Hope it all works out well and soon!

jenjen- I hope your redness goes away and everything settles down! Great advice from Lucy on taking pics for reference over time.

jmb5 and donna, we're in your pockets today. Healing thoughts to you and may Wilbur bless you with stupid happy thoughts on waking! (That's my favourite bit!)

bellamomma, so glad you feel you are in a good position to talk to the experts. Staying warm is vital - I had my surgery in the middle of summer but they wouldn't let me open the windows at all or go outside for over a week. But here in Switzerland, the minimum hospital stay is 7 days, usually 10 days, so they get to control this stuff much more tightly!

sweetpickle, dust bunny are minions of evil so you need to be supernotcleaningwoman! That's the only way to defeat them!

curly, just remember that the BRCA genes are only two of many, many, many genes that can cause breast cancer. Having a definitive "no" on that will not make any difference if there are other mutations at play. My sister had BRCA testing which was negative, but the geneticist's reports says very clearly that they believe it is genetic, given the family history. It was their recommendation that I have annual MRI screening and here I am. You have done everything you can to reduce your chances, so take some comfort in that. That said, your kids should probably be tested, if that's what they want. *hugs*

Curly, good luck sorting out the genetics aspects.  It seems important if you have children.  I tested negative, but because my mom wouldn't get tested there was no way to know whether my siblings should worry or not as you get this on the mom's side.  The counselor told me BC is nearly always a "fluke" with a small percentage known to be of genetic origin. So my siblings (I have no children) have to make their own decisions about testing vs. more frequent scans and exams.  I decided it would be easier for me to have both breasts removed than to live out my life with increased vigilance on my remaining breast.  No regrets.  I'll likely have my ovaries removed at some point, no rush on it though.

Southern - I had a single mx of my remaining (good) breast at the time of my bilateral DIEP reconstruction at NOLA and was in surgery for 9 hours.  They told us it would be 5 hours but the surgeon spent a lot of time cleaning out scar tissue from my original cancer side, trying to help improve my lymphedema.  I was in the hospital for 4 days.

Southerngirl - I was 7.5 hours in surgery for PBM and DIEP but my PS had a very large team helping!

Beebop - I will be 6 weeks out of surgery on Monday, still not wearing anything.  I have a 2nd followup with PS on Tuesday, will ask then and let you know...

Michele

I had kind of good news today. I got an email from my new surgeon, and he believes my abdominal CAT scan shows good vessels for my surgery.  I am a little concerned that I have only one good one on one side, and three on the other.  This is the original scan I had last summer that showed the liver lesions which they believe are incidentalomas.   For the new ladies, that means something is there, but it's not anything to worry about.  A name given to strange things found on tests that have no origin, and given that name by SBE's son, who is a radiologist. Anyway, he is not wild about the quality of the test, and I have a feeling he is going to want another one done. I really hope not, because I have a problem (which get's worse with each scan) with they dye.  Last time I had to take prednisone and Benadryl for the reaction.

Kelly, I am curious, did the cleaning out of the scar tissue help your lymphedema at all?

I am being told my surgery will be 6 hours or so. But, I already had my bmx, so that takes a big amount of time off the surgery.

goldie, my arm is still swollen.  I think it might take a while to see if lymphedema was helped.

Southern- I remember being nervous about how long the surgery was too.Mine took 14 hous and I needed two blood transfusions but I was o.k. It was hearder on my family than me because all I had to do was go to sleep and wake up.

Lahala- Indeed they are evil and I plan to pay the kiddos extra to suck them up for me.

mine was ten hours. Harder on the people waiting ( I read their texts later and they were freaking out!) 

Goldie- I hope you don't have to repeat that test. Did you have the CT or MRA? 

Funny how some have the surgical bra and some have nothing. I had the surgical bra  with the Velcro opening. I think I finally asked at 6 or 7 weeks if I had to keep wearing it! The Velcro was itchy. Then I got the Bali. For the new girls Goldie will tell you all about it ( saved me hours and hours of bra shopping time!)

Donna - wow, that was fast!  You sound so coherent!  Glad you are doing well.  I was eating cheeseburgers on day 2, too bad you can't eat, but hope everything goes well.

Iowagirl - I believe that is why they have to check the flaps with the Doppler every hour to make sure the blood is flowing and there are no clots.

Goldie-Tell me about the Bali!

Noticed the link I posted for the bra is not working.  I don't know why. 

You can get them at Kohls.  Bali Comfort Revolution style # 3484.  They seem to be on sale right  now. Get em while you can. Great price.  I will try to post the link again here, but if it doesn't work just go to Kohl.com and type in the search Bali bra 3484.http://www.kohls.com/product/prd-1110758/bali-bra-comfort-revolution-full-figure-with-smart-sizes-3484.jsp

thank you iowagirl

goldie- I wish I could find my size, looks like they dont have it but that is a great price!

Nahahi- dear lord no heat for me!  I had a bilateral oophectomy and I have a fan blowing on me along with an ice pack and I still have a horrible heat rash! Im kinda glad its so cold out right now.

It says I shouldbe a 46 AA and that they were out of stock.

That sounds so refreshing Nihahi!  Its so funny that I became such a neat freak since getting cancer. I had such low white blood counts for so long I became paranoid of germs! lol