PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Wednesday, June 13, 2012

Dr. Oransky

Thanks to Sue Friedman's blog for FORCE I became aware of Dr. Oransky's talk on "pre" conditions in which he specifically mentions previvors and FORCE. You can see his talk : here . I encourage you to watch the video and form your own opinion I debated for several days on whether to post a blog or to respond at all.  Then I decided to do both :) You know me, can't keep quiet on something for too long. This is the comment I left on his blog.. we'll see if  I get a reponse

Dr. Oransky-

I watched your video a few days ago and have been composing a response to it ever since then. I suppose from the outside looking in, as someone who has never experienced what PREVIVORS have gone through, the drastic measures that we take do seem a tad silly. If you simply state "I'm cutting off my breasts in order to prevent cancer but I don't have it yet" I suppose it does seem a bit ridiculous.

However, Dr. Oransky I can assure you it's anything but.

You see, I am not a BRCA carrier. I am an "uninformed negative" simply because I was adopted and there wasn't enough family history to successfully test me for the gene. However, I have the pleasure of having another genetic condition- Cowden's Syndrome. Cowden's Syndrome is a tumor suppressor gene mutation. It's very rare. Most of my doctor's have to be told about it and then go research it before they decide how to treat me. I'm seen by a genetic counselor, not on a regular basis now but there's always one in the background if I have questions. Cowden's Syndrome gives you numerous benign tumors. To date, I've had approximately 25 surgeries for various things. (I suppose at this point I should say that I'm 28)

When I had a benign brain tumor (Lhermitte Duclos) the neurosurgeon was astute enough to suggest I get tested for Cowden's. I was 19 at the time. When I tested positive for the mutation I was given information about all of the risks and additional screenings. I was warned about the elevated breast cancer risk and told that I had the option of a preventative mastectomy. I decided to wait and go with increased surveillance instead. I had my first mammogram and the ripe old age of 23. Do you know what it's like to sit in a breast center waiting room with a terrycloth robe on getting pitying looks from the 50 and 60 year olds there for the annual?

Every mammorgram I had, I immediately had an ultrasound. Then a breast MRI. Then an unltrasound guided needle core biopsy. Then an excissional biopsy. This entire process would take months. Do you have any idea how agonizing it is to wait to hear if you have breast cancer before you're 30?? The same doctor had performed all but one of my breast biopsies (I had been having them since I was 13, for fibroadenomas first). We had formed a very good relationship. He begged me to have a mastectomy. As well as 3 other doctors. You see, I'd had purulent (yes I'm in nursing school so I know big medical words :) ) nipple discharge, and several biopsies come back with ADH (atypical ductal hyperplasia). I'm sure you can appreciate that I was on a slippery slope to DCIS or invasive breast cancer. What's funny is that the 4 doctors that begged me to have the mastectomy actually would've profited more from my NOT Having one. Have you checked out the price of the aforementioned tests?? And all of those were done twice a year. I would've ended up racking up medical bills in the millions. And what if I'd actually been diagnosed with breast cancer? Then you add chemotherapy/radiation, lumpectomy, PET scans, etc,etc. So the assertion that you made, of doctor's being able to profit from things like this is simply not true in all cases. It would've made more business sense to keep me having tests.

I finally decided I was DONE. I was done waiting in agony to see if this was the time I didn't dodge the bullet. I was done getting legally tortured by mammograms and breast MRIS and needle biopsies. I was done worrying about whether I was going to die young. So I agreed to have a prophlaytic bilateral mastectomy with reconstruction.

I frantically searched from some type of support group and some type of group that I'd fit into it. I wasn't a survivor, so  I didn't want to label myself as one. Someone turned me on to the FORCE page and the term PREvivor. PERFECtT! I found where I belong! I quickly got the book "Previvors" and read it. Then I gave it to my mother to read, and it helped her understand why I was making such a radical decision.

In April 2011 I marched into the hospital perfectly healthy and had my breasts removed. And..things didn't quite go as planned. I had complications. PLURAL. It was a pain. It was heartbreaking. But it wasn't life threatening. And now, a year later, I'm perfectly fine.

I say all of that to say this. I took major offense to your dismissal of the term previvor. It's something I'm proud to be a part of. FORCE was a lifeline for me in a very hard time in my life. And yes, it was hard. Gut wrenching. But never once did I regret my decision or turn back and FORCE made me realize it was ok to be like that and have moments of complete melt down.

I respect your opinion of the term. I really do. Not everyone agrees with being a previvor. In fact some people with a genetic mutation chose to do nothing at all. But for those of us who stare our inevitable fate in the face and choose NOT to be a victim- please have a little more respect for us and what we've been through. Each person comes to FORCE for a different reason, but everyone has a reason to be there. People with genetic mutations are not the same as someone simply paranoid about getting cancer.

Dr. Oransky, thank you for allowing people to post comments. I know my little story won't change your mind completely, but you do need to realize what a previvor REALLY is.


My PREvivor blog:


  1. Dr. Oransky has since replied in a very nice way to my comment. I can see where his concern is coming from and despite coming off not so well in the video he makes up for it in his blog. Please feel free to drop by and read the lively discussion: