The Mutant Club Expands

In support of Nancy's fight with Cancer and for all of us affected by cancer, I wanted to share a bit of my story about HBOC- or Hereditary Breast and Ovarian Cancer.

After our Smith family had genetic testing for hereditary breast and ovarian cancer, we discovered that two of the four stunning Smith sisters had inherited the mutant gene from the Boococks and two hadn't. I, Andi, am the other mutant sister in what Nancy and I call "The Mutant Club." Mom and Grammy Boocock are also members of long standing. Yesterday, one of my children was identified as the newest mutant club member.

After my genetic testing, I found I had inherited the same deleterious mutant gene on chromosome 13 as my mother, grandmother and Nancy. Now, we know at least one of my 3 kids also has this mutation. We all are Braca 2 positive. We have inherited a high risk for breast and ovarian cancer.

Nancy's plea for support has inspired me to share this information.

Yesterday, while my child, and I were discussing the positive genetic results with a genetic counsellor and oncologist, we opined that in years to come there may be simple blood test to proactively detect cancer. I was then told of a current research study at Maine Medical to study a protein they think may be just such a marker for proactive identification of breast cancer or ovarian cancer "carriers". Being Braca 2 positive, I was eligible to participate in this study, so I had a blood draw for this research study after our meeting.

This message is my round about way of saying how I second Nancy's plea for support of the Relay for Life and the American Cancer Society. In the future research may stop this disease from being inherited and passed on, or may identify it by a routine blood test before it can harm anyone.

I think knowledge is power. Knowing we are Braca 2 positive, My child and I can now be proactive in our fight against cancer. My child was told they can now even do genetic testing on embryos to determine if they have inherited the Braca 2 gene.

I had to weigh my risks and received great counselling in deciding how I would be proactive about my inherited cancer risk. In January 2010, at age 59, I had my first surgery. I had a laparasopic bilateral salpingo oopherectomy (BSO), or the removal of my ovaries and tubes. It was a cinch. They were benign and now my chance of getting ovarian cancer is drastically reduced. The BSO is a "no brainer" proactive surgery recommended by all the MDs talked to as the best preventative measure for Braca 2 positive people who have already had their children.

On April 9, 2010, I am having a prophylactic bilateral mastectomy with reconstruction. Being Braca 2 positive, my risk of getting breast cancer by age 70 is up to 87%. I have seen first hand the suffering of Nancy and others with Cancer and hope to not share that horrible fight. I'm a chicken, so I would rather loose my famous "Boocock Boobs". On the positive side, at 60, I will have the breasts of a 19 year old.

So my request is twofold: Support Nancy's fight and the American Cancer Society; and, Boococks; get HBOC testing! Knowledge is power.

An Appeal to All Who Read This Blog

In light of the recent passing of Cheryl and Hank's dear friend, Bob Dalton, and "our own" dear Hilda, as well as the countless others whose live has been touched by the terrible disease of cancer, I ask you all to consider supporting me in this year's Relay for Life.

My Reason to Relay

I relay for:

* Myself

* For my dear friend Deb Reid who fought so bravely

* For Mom-Alice Smith and my Dad Frederick Smith

* For Dale Shaw

* For Lillian Boocock

* For Grampa Smith

* For Uncle Arthur Smith

* For Louise Doty

* For Bob Dalton

*For my cousin, Lynne

* For Hilda Richie

* For all those who have had their life or that of a loved one affected by this evil disease

I Relay because I want to see an end to cancer during my lifetime. Relay gives me the unique opportunity to celebrate the lives of those who have battled cancer, remember loved ones lost, and support the American Cancer Society’s lifesaving mission by fighting back against a disease that has already taken too much.


Please support my efforts to fight back against cancer by making a donation or joining my Relay For Life® team. We will relay Saturday June 26-27 from 6 pm until 6 am at Windham High School, in the brand new Relay for Life of the Sebago Lakes region!


Your efforts will help the American Cancer Society fund groundbreaking cancer research, provide up-to-date cancer information, advocate for all people to have access to screening and treatment, and offer free programs and services to improve the quality of life for people facing cancer. By being a part of Relay, we are joining a worldwide movement to help defeat cancer for future generation



Please join me in my fight against cancer!

Nancy

My Page:
http://main.acsevents.org/goto/NancyTufts

Remembering a friend

In Memory of Bob Dalton

March 11, 1948 - March 19, 2010

Kennebunk, Maine

The Gourmet Group will never be the same without you, Bob...
Kampai!

The Beast is Back

Yesterday I had my monthly checkup to go over my CT scan results with my oncologist, Laurie Small. There is no fun way to share the results--it appears that there are some spots of cancer which appeared on this scan, Tuesday. My CA125 has also risen to 65 (anything below 35 is considered normal). So, I am now officially off the drug trial that I was on, and will be going back into treatment for this recurrence. I will be going on Doxil for my chemo. This will mean monthly infusions, and is supposed to be a relatively well tolerated drug. There should be no more hair loss (good thing, I only have about 10 left) and the other side effects are the typical--nausea and fatigue. The worst side effect is skin rashes on the trunk and arms and legs, and something called PPE, which is a severe rash and skin peeling (like a bad sunburn) which occurs on the palms of the hands and soles of the feet. This does not mean that I will get all the side effects, but those are the most common ones. Before I begin treatment, she is referring me to a gynecological urologist. The Dr. who read the CT scan also found what he thought was scar tissue on my urethra (I know that is misspelled--it is the tube from the kidney to the bladder). Since this is not her specialty, she wants me to see a specialist so that if there is any treatment needed for that, it can be done before the chemo begins. IF there is significant scar tissue, they might decide to put a stent in the tube to prevent any further blockage. Currently there are not problems with my kidney function numbers, but she just feels this should be checked out before the Doxil, so that if there is surgery needed, it will happen before the chemo. She would also like me to consider having a port surgically implanted to make accessing a vein easier for chemo and blood draws. This is a catheter place directly into an artery below the collarbone, so there is always a place to access for chemo infusions or blood work. About half of the patients have them. So--all in all not the greatest news, lots to digest and learn about. I have had a good run of remission, and Laurie feels that I will be able to achieve another remission with this treatment. I just wanted everyone who reads this to have the information as I received it. I'm not sure that anyone but Cheryl even reads this anymore, and Cheryl already knows because she stopped by right after I got home from my appointment. Wish I could think of some cute picture to post with this or some clever retort to end this with, but right now I can't--so I'll just leave it with cancer sucks--please support the American Cancer Society and Relay for Life--Nancy