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.

Michelle

My PREvivor blog: www.tatatothegirls.blogspot.com

Guest Post

The following is a guest post from Mesothelioma Center at www.abestos.com

The Relationship between a Mesothelioma Patient and Caregiver

When dealing with a mesothelioma diagnosis, many people turn to family and friends to create a strong support network. It's important for cancer battlers to be able to rely on people they can trust, people who can help them cope during a difficult time.

Being diagnosed with a preventable cancer – caused primarily by exposure to carcinogenic asbestos fibers – can definitely be devastating.

The cancer is extremely rare – diagnosed in less than 3,000 Americans each year – but it is very aggressive as it damages the mesothelium and then spreads across the body. The symptoms it causes can be disabling. Patients must learn to cope with chest pain, coughing, difficulty breathing and persistent fatigue.

Because the symptoms of mesothelioma are more severe as the disease progresses, some patients find that it is difficult to take care of all of their everyday responsibilities. In addition to the cancer itself, aggressive mesothelioma treatments – radiation therapy and chemotherapy – can make it tougher for patients to live their lives the way they are used to living them.

Energy levels change. Physical abilities change.

And this is why people turn to their caregiver – for help even with small things.

The relationship each mesothelioma patient has with a caretaker can vary greatly from person to person. It's quite common for people not to want to ask for help. Some people only feel comfortable asking for help from a close friend or a family member – a spouse or a brother or sister.

Others are happy to accept any support that is offered to them.

Regardless, developing a close relationship a caretakers and asking for that caregiver's emotional support during a cancer journey is the holistic goal. Some mesothelioma patients may only desire basic physical support – help with chores, travel assistance to and from the doctor, for instance.

The relationship a person develops with a caretaker will depend on the personal level of the people involved. That makes it important for patients to consider carefully whom they choose to be their caregiver.

What Kind of Care Might a Mesothelioma Patient Request From Their Caregiver?

The relationship between a mesothelioma patient and a caretaker may also change over time. A patient's needs will grow if the cancer progresses. The things that a mesothelioma caregiver can do to help their loved one will increase over time.

Early stage patients whose symptoms are not severe may only need occasional assistance with errands or strenuous activities like yard work. Caregivers can volunteer to come to the patient’s house a few hours out of their day to help with these basic things.

Later stage patients whose shortness of breath and exhaustion – side effects of both the cancer and of treatments – make it difficult to move around may ask for help with cooking, cleaning or getting dressed.

Caregivers for these patients may be in for a bigger time commitment – large portions of their day may be spent taking patients to appointments at a leading care center such as the Vancouver Cancer Center or Toronto Western Hospital, helping the patient dress or eat, or even helping the patient move about the house.

Although many cancer patients feel that asking a loved one to provide care means that they are weak, that is not the case.

Caregivers can also help patients feel more secure in asking for help by reminding them that accepting help ultimately gives them more energy to focus on treatment and rest.

Patients and caregivers can find additional support during this difficult time by joining a mesothelioma network such as the Canadian Mesothelioma Foundation. Here you can connect with other patients and caregivers to learn more about how to cope with your cancer diagnosis.

Author Bio: Faith Franz is a writer for the Mesothelioma Center. She combines her interests in whole-body health and medical research to educate the mesothelioma community about the newest developments in cancer care.

Life goes on....

I can't even remember the last time I blogged. Seriously...without looking I can't remember. I remember writing about my boob-a-versy but can't remember if I wrote anything after that.

That's good right? Maybe I have finally closed the door on that chapter in my life and I'm busy writing a new one. So I'm happy about that. The time has finally come when I'm not obsessed with my chest. I've been mostly concentrating on school lately and haven't had time to even WONDER about boobish things.

Here's a quick update. I saw my PS last week. She said things were looking good and we talked about what I wanted touched up. A little scar revision and some dog ear removal. (Dog ear= skin puckered and gathered at the sides of an incision. In this case, they are under my arms.) Since she feels very guilty about me missing school so much, she wants to wait until I'm out on break. So I'll schedule that in August, and we'll see about nipples next.

And then...I'm done! YAY! So now I get to concentrate on school and getting the FORCE group up and running.

I did like what Sue Friedman, the founder of FORCE said in her latest blog. She says that she'd taken so many prophalytic steps to save her life, but she wasn't really living. I'm really trying to make the most of the life I fought so hard to save. Day by day :)

To anyone who may be reading this who's about to go through the surgery or struggling with the recovery. This is not forever. Like Genevieve in Divine Secrets of the Ya Ya Sisterhood says ," Life is short, but wide. This too shall pass" and like Sally Fields says in Steel Magnolias:

"Life goes on"