Uncomfortably Numb?

I think I have spent the last 9 months in a weird sort of haze and now I might be coming out of it.  Ever since my diagnosis, I have been on cruise control, or crisis control, just getting stuff done that needed to be done without really figuring out how all of this new information I'd been inundated with was affecting me.  I think that I was just happy knowing that I was facing the cancer head-on and wasn't questioning my decisions, I was just going with my gut reactions.

But now I sit here at my computer, drains waiting to be removed from the tissue expander exchange procedure, stitches poking me uncomfortably under my new breasts (that I have yet to fully examine because I'm waiting for the doctor to tell me that he thinks everything is healing well and to tell me they are really sticking around before I start to relish in their perkiness!!!) I am starting to wonder what I do now?  Especially in light of the U.S. Preventive Services Task Force's (USPSTF) new guidelines, I feel like I need to do SOMETHING.  I have started looking on websites and blogs of fellow breast cancer patients and survivors to get some grounding, get some guidance and get some support.  There are a bunch of incredible women who have been through and are going through what I am going through, it just amazes me.

While I am searching for my own answers, I am comforted by something a friend's mother told me a few weeks ago.  When I was first diagnosed, my friend told me that if I want to talk with someone about what they went through, her mom had said she would talk to me.  At the time, I didn't call her because I was looking for women my own age, in a similar circumstance, to try and find some connection and support.  AND it was so tiring, and so draining to have a conversation with a current patient or recent survivor because I'd be on the phone for an hour with some stranger (with whom I now shared some awful bond) to try and find a parallel story and digest the information, I just didn't talk to that many people.  I found that too hard for me to handle during this period of crisis.

About a month ago, my friend's mother died.  My husband and I went to pay a shiva call and I sat and spoke with this woman about everything else BUT cancer - how her father was doing, about her new grandson, about my friend's kids - and then she went to talk with her other guests. 

As I was getting ready to leave, she stopped me and just said, "I just want you to know that I never thought there would be a day that I didn't think about breast cancer, and then, a few years after my treatment, I noticed I didn't think about it every day.  It got less and less."  (She is a ten year survivor.)  I just stood there as tears welled up in my eyes and said, "thank you".  It is hard to explain how wonderful it was to hear her say that, to know that while right now it seems so all encompassing, that there is a light at the end of the tunnel, and that life really will go on.

Task force opposes routine mammograms for women age 40-49 - are they for real???

I just read this CNN article tonight.  I cannot believe what I just read.  Some task force, under the umbrella of the US Dept of Heath and Human Services, just said that mammograms aren't necessary every year for women age 40-49.  This changes the previous guidelines which recommended mammograms as early detection for women over age 40.  The article goes on to say, that "...[W]hile roughly 15 percent of women in their 40s detect breast cancerthrough mammography, many other women experience false positives, anxiety, and unnecessary biopsies as a result of the test, according to data."

Please, provide me with the percentage of women who experience false positives, anxiety and unnecessary biopsies as a result of mammograms.  Is it more than the 15 percent who saved their lives by detecting breast cancer?  And, even so, having a mammogram didn't kill them.  Neither did the anxiety or unnecessary biopsies.  But what would have happened to the 15 percent of women who detected breast cancer had waited until they were 50?  What data shows how many of those women had a history of breast cancer in their families or felt a lump?  What if they just went in because they knew it was good to have a baseline for future mammograms and were surprised with the fact that something did show up on the mammogram and that they did find out earlier rather than later?  What percentage of those women were able to, or decided to, save their breasts and just have a small lumpectomy?  What percentage of those women who had mastectomies and were able to prevent the recurrence of breast cancer?  What percentage of those women who detected breast cancer in their 40s were able to avoid chemotherapy because the cancer had not yet spread to their lymph nodes or, worse yet, some other part of their bodies?  OR, worse yet, what percentage of those women STILL had to undergo chemotherapy because the type of breast cancer they had was so aggressive that it would have spread, even if it had not yet done so?  What percentage of those women were able to save their lives because they went to doctors who trusted these guidelines and sent these women for mammograms accordingly?

This is a very hard article for me to read given the fact that I am still undergoing treatment for breast cancer at age 38.  For those of you unfamiliar with my blog, go back to February & March 2009 articles which discuss my breast cancer discovery ON A FLUKE because I met a new doctor who gave me a breast exam and said I had lumpy breast tissue so I should go get a mammogram.  She felt no lump, I had no history.  In fact, my OB/GYN who I had seen regularly for two years before then never even MENTIONED a mammogram because there was no reason for it.  When I read an article like this, it is hard for me to FATHOM what I would have gone through if the guidelines were set for a higher age to begin mammograms.  If the recommendation is to wait until age 50, would my internist still have thought to send me for a mammogram?  I highly doubt that. 

This doesn't even begin to discuss what health insurance companies might decide to do based on this task force recommendations.  Okay, while I want to believe that insurance companies will still fully cover mammograms, who knows?  Everyone is cutting costs.  Maybe insurance companies will deny mammograms for women who do not fall under a "high risk" category.  I don't know, I don't want to think about that.  Because I assure you, if the test had not been covered by my health insurance, I GUARANTEE you that I would not have gone for a mammogram.  No way, no how.  Before my diagnosis, I would have told you I was 100 percent healthy.  Some tests might be considered unnecessary, but I just don't see how this task force just pushed back the age for women to get annual mammograms to age 50...oh, and I know this isn't well thought out or well written.  I am still recovering from my surgery of having breast tissue expanders exchanged for final breast implants.  Not even a week old.  I am still on pain medication and have drains running out from under my arms.  This just hit a raw spot.  More to come later when I can properly articulate how PISSED OFF I am.  Congress, here I come!