Thursday, August 5, 2010

The Oncology Oracle Speaks

 I was so fortunate that my oncologist had an opening first thing Monday morning.  The waiting is the worst of any of these processes.  The data and opinions I’ve been accumulating over the past month gave me valuable perspectives I would not have otherwise considered.  It’s important to follow your gut, but equally important to know that the gut and brain are closely connected.  The more relevant information I have, the more reliable my gut will be.

Here’s some of what we covered, and other tidbits I’ve collected:

What lowers my risk factors:
  • I did not test positive for BRCA genes
  • Keep my vitamin D levels in a high zone (50-60)
  • I finally got my lazy butt up and participate in a regular exercise program.  VERY important, by the way.
  • No family history of breast cancer. Although the majority those diagnosed have no family history.
  • Normal weight (took off 20 lbs post-chemo)
  • Minimal alcohol intake.  Maybe 1-2 glasses of wine a week.  For the most part, it just doesn’t taste as good any more.
What increases my risk: 
  • I have breasts.
  • I’m female
  • Increasing age – as of next week I’ll be over 60
  • A personal history of breast cancer
  • Radiation exposure – damned if you do, damned if you don’t
  • Beginning your period before age 12 (I was 11)
  • Beginning menopause after age 55 (I was 58)
  • Postmenopausal hormone therapy: 3 months of bio-identical, but messing with nature nonetheless
What could reduce my risk:
  • Keep exercising.
  • Move to another planet
  • Arimidex and similar aromatase inhibitors – these are out of the question for me; the pain was debilitating.
  • Tamoxifen:  I’ll be doing a lab test to determine if tamoxifen will be effective for me.
Here’s the thing when they say these drugs “reduce your risk by [60%, 70%, etc.].  That is the percent of the percent of your risk.  So if you have a 2% risk of getting breast cancer, taking a drug that reduces that risk = 60% x 2% = your risk is now 1.2%.

On the other hand, there is a significant increase in the percentage of women taking Tamoxifen that develop uterine cancer. In this 2008 study, it increased the risk 3:1 compared to women not taking Tamoxifen.  Is that a risk I want to take?

And let us not forget – no test is perfect; there are always exceptions. Science and medicine are learning processes based on likely outcomes and we are the long term test subjects. For the first 3 years after I found the lump, no one thought it was even enough concern for a biopsy, based on the mammograms, ultrasounds and thermogram.  Much has changed since then, but my first pathology test diagnosed the wrong type of cancer.  This is not unusual.  Prone to Error: Earliest Steps to Find Cancer

(Thanks to Join Our Loop for that link – stop by & visit this dedicated group.)

The bottom line we agreed upon is that I am not the best candidate for a prophylactic mastectomy AND there are no guarantees. 

My insurance does not cover Dr. Hackert, but it does cover the hospital etc., so back to the drawing board and financial planning department.



What is your experience with Arimidex and/or Tamoxifen? Your thoughts on using these?
Have you been through mastectomy, reconstruction or reduction?  What is your opinion?

13 comments:

Christina Kingston said...

I don't like the idea that moving to another planet is one of the best ways to decrease risk. Good Lord.
But oh so true. This world is polluted beyond belief. And the health care system is a menace of outrageous proportions. You're a fighter and you have 100s pulling for you. Connecting women through your business is a beautiful thing and allows you to share your strength in more ways than one. Adore you Laurie!

LaurieA (@Turban_Diva) said...

Mutual adoration - thanks for always refreshing cyberspace with your insights. The laughter you evoke is amazing medicine! xoxo

BreastCancerSisterhood.com said...

It's a text book in itself all the things we need to consider as we navigate this breast cancer road. After five years on Arimidex, it was time for me to stop taking it. I think the secret to coping with Arimidex's side effects is exercise. If I didn't go to the gym and/or walk at least three days a week, I ached all over and felt like I was 105. New statistics say a high percentage of women quit taking aromatase inhibitors because it makes them feel bad, but I urge everyone to reconsider & try exercise.
Brenda Coffee

LaurieA (@Turban_Diva) said...

Thanks for this insight, Brenda. The side effects are so varied with different people, and it's encouraging to know some symptoms will diminish with exercise. Some studies are finding that acupuncture can also help with some of the side effects of these meds. During chemo, exercise helped me significantly to relieve achy muscles.

In my case with the Arimidex, it was a different pain, far beyond muscle aches. I couldn't lift a one pound weight without such searing nerve and bone pain in my arm that I'd drop the weight. It was so severe that I thought I had bone cancer. The same thing happened with the back pain - like I was being stabbed, and couldn't move or catch my breath.

Glad you made that point. I encourage women to at least try what is appropriate for their condition. If there are problems, I hope our posts will provide perspective on forms of relief and/or other treatment options.

Cathie said...

If i can't talk about hormono-therapy (twice ER & PR-), i can share your doubts and thoughts... 2 years ago, i've got a second cancer in the second breast, 9 years after the first, and it was really a new cancer.
The onco considered this new bc with all the attention than a first. Cause lymph node was OK, and cause this twice bc was detected at the beginning, i've got chemo- & radio- treatments, but no bilateral mastectomy: even one single breast guard its entire place, even a diseased breast.
If my onco's afraid of metastases, it's especially away from that place, even if it sounds crazy!
Total agreed your idea that each woman is one, single and different. Hope you're the most quiet that it's possible. Your texts are great !
Gentle hug xoxo
Cathie (France)

Liz Lipski said...

Hi Laurie,
Glad to hear that you are exercising. From the latest data, exercise and tons of fruits and vegetables decrease risk of recurrence as much as anything. Taking high doses of proteolytic enzymes help to A. mobilize your immune system B. digest any encoating that tumor cells create for stealth C. increase nutrient acquisition, and D. generally help like pac-women as blood purifiers. Also, think about other ways to sit on the estrogen receptor sites: red clover, rye, soy. I know that there is controversy about this, but in general the research is positive.
Also, community support, which you have in buckets also helps keep you healthy and gives us the courage to be the hero that you are.

Liz

Sandy said...

Well, Laurie my friend, it's been a while since our last CarePages chat. On one hand, that's a good thing, on the other, should have kept in touch better. Anyway, glad to hear from you and glad most everything is going well for you. Since I am not a BC survior, 2 times with cervical and once with bladder, I can't advise on any of the meds you are talking about. BUT, I can give you Support, Love, Hugs and an ear to bend ever once in a while. Best advise, go with your gut, it's never wrong.
Got my test results back last Thurs from the CT Scan, and all is well, no signs of the BIG C!!! Really good news.
I plan on updating my carepage soon, it been over a year since my last update and have a few things to share.
Anywho, I am sending prayers, love and lots of hugs your way.
Sandy Hembree

Sheri said...

Laure - I don't know if you remember me but I have been following along when I can with your Care Pages. I just wanted to say how I admire your strength, knowledge and compassion for others. I myself have another kind of cancer but don't require treatment now. You are an inspiration for all and I know you will make the right decisions based on your gut feelings. Your gut feelings have always been right!!! Good luck and know that my heart is with you.

LaurieA (@Turban_Diva) said...

Liz, thanks so much for this input. During chemo the only thing I could choke down were the probiotics, so I will certainly revisit the enzymes. And yes, tons of fruits & veggies & friends & laughter!

Sandy & Cathie, you are inspirations that remind me how resilient our minds and spirits can be.

Sheri, of course I remember you and certainly miss you; thanks so much for all the healing energy you send my way. I'm sorry to hear you have been under attack from the nasty C. Please don't skip a beat in calling or emailing if there is anything I can do to support your healing.
Love to all of you (even those of you who did not leave a comment - I can feel your presence!)
Laurie

Lauren said...

The Cancer Support Community has locations all over the country to offer support and programs to keep you active and surrounded by great people who will help you through.

An example of ways they help is writing awesome books such as Frankly Speaking About Cancer: Coping with Cost, you can access the pdf version here:
http://www.thewellnesscommunity.org/mm/Learn-About/FSAC/Coping-with-Costs-1.aspx?FT=.pdf

I hope this helps.

LaurieA (@Turban_Diva) said...

Lauren, thanks so much for this valuable resource! I'll post it on FB & Twitter, also.

Lauren said...

Glad to hear you found it helpful.

Right now we are conducting research on the needs of women with breast cancer that aren't being met. I highly encourage you to get involved by answering some questions about your cancer journey. You can find out more in this awesome blog post: http://beyondbreastcancer.wordpress.com/2010/06/29/the-breast-cancer-m-a-p-project/ or directly from the registry at: http://www.breastcancerregistry.org

Karin Bosela said...

Regarding breast reconstruction, I will be having fat grafting reconstruction in May by Dr. Roger Khouri of the Miami Breast Center (www.miamibreastcenter.com) this technique is cutting edge technology without any major surgery. He is the only DR that I found that works with medicare and that in and of itself says alot. I also am not a candidate for prophylactic mastectomy due to allergies to plastic and silicone and the fact that I have MS. Check out his website for some great information. He has a book that shows every step of the procedure with before and after shots of his patients along with their testimonials. Everything looks as if you never had cancer at all. He is truly blessed with his work.