Anyone with Factor V Leiden who had Flap surgery?

fleur-de-lis · March 2014

Hello Ladies,

I am wondering if anyone here who pursued reconstruction with Free Flaps knew they had a genetic clotting disorder prior to their surgery?

And, if so.....how did surgery work out for you?

I was diagnosed with Factor V Leiden genetic mutation back in 2004 when my father developed a DVT in his leg after surgery, I am a Heterozygote, meaning that I have one bad copy of the gene (Thank God not both!)....and have been told that being on an operating table for 8+ hours whilst receiving anti-thrombotic therapy would not be in my best interest.

I have also heard that the doctors at The Breast Reconstruction Center in NOLA have handled patients such as me successfully, especially if we have never had a clotting episode, and only have one copy of the gene.

I am starting to look into my options for a PMX for various reasons versus waiting and seeing " If and when" Cancer might strike

I have a strong family history, BRCA 1+2 negative, Dx.ed with ALH and ADH per biopsy, as well as a previous Phyllodes Tumor which left very little breast tissue on my left side.....I have waited a few years to pursue any sort of ReCon option due to a Phyllodes tendency to return, usually within three years ( I am almost 5 yrs out)

Geneticist at MD Anderson feels that I am at about a 40% risk of Cancer....so I am attempting to get my ducks in order, as they say...I have been reading here for many years after my initial few posts regarding my Phyllodes tumor back in 2009....I have learned much thru this forum, but the time has come to roll up my sleeves and really get going on this project...better to be proactive than reactive!

wyo · March 2014

fleur- can't answer your question specifically but my DIL has factor V leiden and has had pulmonary embolism at age 17- she was able to get pregnant and successfully carry the baby to term and NOT have a c-section.

I think the key would be to make absolutely sure that not just your surgeon but your anesthesiologist are very familiar with the clotting disorder and have a plan for a surgery that long in duration. I think since its quasi elective some might be hesitant but as you say you have not had a clotting episode that was symptomatic yet- good luck

fleur-de-lis · March 2014

Thanks for sharing your knowledge and experiences with me.. Was your DIL a Heterozygote or Homozygote?

Glad she was able to conceive and carry a child to term! Did she need to use Lovenox during her pregnancy?

The hematologist told me surgeons such as those located at the center in NOLA, who have done many flap surgeries( and henceforth due to their experience doing nothing but Flap surgeries,the time under anesthetics is generally quite a bit shorter) have more experience with this...I have seen people mention FVL in some of the threads regarding Flap surgeries in the past six months..just passing comments

My Hematologist has seen successful surgeries in those with FVL, as he has to decide who might be a candidate and sign release forms so that the patient can pursue surgery

I know some of the Flap surgeries are preferred over others,i.e, Diep is preferable over SGap when one has FVL

I am in the exploratory stage with the PMX ....and was hoping to hear from others who dealt with clotting disorders and Flap surgery.....most likely I will end up with the PMX with implants, but I need to consider and research all the options

nodak · March 2014

Fleur,

I have FVL (hetero) and prior DVT with my first lumpectomy surgery in 2011. My plastic surgeon would not discuss any type of flap surgery with FVL. She stated my risk for clotting and losing the flap was too high. I wound up with BMX with TEs last Oct (Lovenox injections before and 2 weeks after surgery) without any clotting problems and I will have my implant exchange in a couple weeks. I trust my plastic surgeon's experience and the science behind her decisions. I wish you the best in your research!

fleur-de-lis · March 2014

Hi Nodak,

Thanks for sharing your experiences, most likely I will go with the implant based ReCon,,but do have to tell you that I just spoke with someone at the gym this AM who is FVL, had Flap surgery, used birth control pills and then oral HRT....just about everything someone like us should not do with FVL, and she has never had any issues...now, I also must tell you that the only reason that she is aware of having FVL( after the fact of using oral hormones and having Flap ReCon)was her brother testing positive for the mutation prior to Chemo...the type they were going to use with his Cancer is know to cause Thrombophilia in certain people, so he was tested...I should mention that this was the protocol in Germany, I do not know what they follow here in the US

15% of those who are of primarily Germanic origins carry the FVL mutation

I am curious that they OKed you for Tamoxifen? My hematologist ( who is also a MO) did not advise me to take it without also using some sort of blood thinners as part of the protocol

Savedbygod · March 2014

I have a rare connective tissue disorder that causes me to bleed like a hemophiliac no factor diffieciencies I usually have two pints of plasma before any surgery. I had my dmx with TE put in and the surgeon couldn't beleive what I bleeder I was he said I was not exagerating when I told him. I ended up with a hemocrit count of 7 and two blood transfusions. From my understanding this surgery is the least concerning when it comes to bleeding, so if it were me I would be proactive and maybe approach it before it might be so bad. I was very lucky I didn't have any spread to my lymph nodes but I did have precancer cells in other breast.

nodak · March 2014

Hey Fleur,

The Tamoxifen was my trigger for the DVT and subsequent testing. I was only on it for 3 months and pow--DVT. Come to find out, my family history is littered with the mutation. My mom and brother have it; my brother's 4 children have it (2 hetero, 2 homozygous) and unfortunately, so far, 1 of my daughters has it. The others are still due testing. The FVL and DVT really steered my treatment decisions with the second DCIS diagnosis. I knew most hormonal therapy was off the table so I chose the BMX with TEs and implants. You sound well informed and no doubt will choose the best option for you. Best wishes!

Savedbygod · March 2014

You too, I am always here if you need me, it's so much more difficult with other medical factors. I am not able to do hormone therapy due to bleeding.

fleur-de-lis · March 2014

Wow, SavedbyGod.......did they ever test you for Von Willebrands mutation..it is a genetic mutation Involving the Factor VIII line.... This can predispose you to bleed excessively when cut, during surgeries, births, etc

BTW- My sister carried the Factor VIII mutation..Heterozygote ....and I carry the FVL mutation

I am to avoid excessive Vitamin K ( although I gave ALWAYS ate a lot of green veggies, and my Hemo said to continue, and just keep the amount ingested consistent, and I should be OK) I do not take ANY Additional Vita K and I take enough Fish oil/ Omega 3's( 6K daily) that I should bleed to death if I happen to suffer from a wound... Thankfully,This has never been a problem....my INR sits steady at 1.5...normal INR is a 1 ( so I keep my blood a wee bit thinner than the mean norm levels)

I also take Deplin daily, which is a Methylized form of Folate,Which helps with the convention of the Methyl donors

With my sister, Celiene's mutation...she is told to eat a lot of green veggies, and to take Vita K....she cannot use Omega 3's, NSAIDS, or anything that would further "thin"her blood......

Funny how we are such opposites, but with genetic mutations, you just never know.

Edited to add..you did mention that you had no known Factor deficiencies...Celiene tested negative the first set of tests...it was when they ran a complete ISAC panel that her Factor VIII deficiency showed up...I am not really not sure why that was...

I am going to get a wee bit personal here( and on a public forum you might not want to reply or put a name to your condition.... And I understand that completely, and support you in that decision ) but is it another type of supposed Auto-immune coagulation problem that you have to contend with?

You may question why I used the word "supposed"....rest assured it is not a negative comment based on anything at all about you,your situation, or condition....it is about the notion of Auto-immune conditions and how the basic mindset, thought patterns and belief systems about those conditions are currently undergoing profound changes in the medical community as we speak

toomuch · March 2014

Fleur-de-lis - I just sent you a private message.

fleur-de-lis · March 2014

Thank You very much, and I will be replying back to you as soon as I get some sleep!

Savedbygod · March 2014

That's exactly what they thought I had but no factor defect.

Tomari · April 2016

I am Factor V for 9 years (Hetero) 1 DVT. Recently diagnosed with ILC and TRYING to schedule my double mastectomy with immediate reconstruction.....I have thus far been unable to find a surgeon who will take my case. Appreciate any help!

Angtee15 · April 2016

Hi Tomari I'm sorry to hear about your diagnosis. Where are you located? I had massive pulmonary embolisms in January (likely caused by a clinical trial drug which was stopped) and just found out I have the Factor V Leiden mutation-- 1 bad copy. I've opted for immediate implant reconstruction--a much shorter surgery than the flaps--and my surgeons say everything should be ok. I am in Chicago.

Galsal · May 2016

Yes, I attempted a Diep Flap albeit we didn't know I was Positive for the Factor V Leiden. It was an abysmal failure due to throwing clots multiple times. Additionally, no PS or Onc or Cardio had me stop taking Tamoxifen then either.

We now know I'm single gene and only provoked, not spontaneous.

Fwiw, my Mother had BC as well and is still living. It was the Tamoxifen that caused blood clots in her Lungs. She only had a Lumpectomy, btw. Her own Mother had a history of blood clots as well, that's why they tested her. Positive for Factor V Leiden, as well as two other blood factor genetic mutations that pre-dispose her to clots. She's on an Rx for the rest of her life for it now. I fought with the Onc about my being on Tamoxifen due to family history. There had been an error made with my test and they all believed it to be Negative. Indeed, it had not been run for FVL as ordered and drawn. It was only after the Diep failure that it was run again and found.

Anyone with Factor V Leiden who had Flap surgery?

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