The other day I had an appointment with my ob/gyn. I have not seen her since she sent me for my mammogram last June. So, when she jokingly asked how I've been, we had a few things to catch up on. The reason I went to see her was that my surgeon suggested I talk with her about the trouble I've been having with some of the Tamoxifen side effects.
I wish I'd gone to see her months ago! She was great. We talked a long time about the cancer and the Tamoxifen and all the side effects, particularly the daily fog and black cloud that appears regularly to mess up my brain function and emotions.
She is not a fan of Tamoxifen. Her biggest issue is that oncologists (mine included), focus on recurrence rates at 5 and 10 years. They do not look at the 15 year recurrence rates, which spike upward for Tamoxifen patients because the estrogen suppressors make the cancer slower growing and harder to detect until it has reached a later stage (no one told me this before!). She also has serious concerns about the risks of endometrial cancer, which my oncologist did mention. And, she takes seriously the side effects I am dealing with, particularly the fog and confusion and the black cloud.
So, she gave me the names of some herbal supplements to help with the side effects, but she also encouraged me to talk with my oncologist when I see him next month about the risks and benefits of stopping the Tamoxifen and instead having my ovaries removed. According to my ob/gyn, the side effects she's observed in patients who have made this choice are far more manageable with the surgical option and it presents no risk of endometrial cancer.
I see my oncologist in a month. Between now and then I have some research and thinking to do...
Sunday, March 23, 2008
Friday, March 14, 2008
The Humiliating Phone Call
Last night when I collected our mail, I noticed an envelope from my radiologist's office. At first I thought it was yet another bill, but I haven't seen him since last August, so that wasn't likely. Now I wish it was a bill.
It was a reminder letter for a follow-up mammogram and ultrasound on the biopsy I had at the end of August. The same biopsy that led my radiologist to recommend the bilateral mastectomy!
So, this morning, I had to call the radiologist's office to explain that I'd like them to correct my records because the breast they want to examine no longer exists! The receptionist I spoke to was very nice, and she even admitted that there is a note in my file that the radiologist had made the recommendation and that they should check with the surgeon before sending a follow-up notice (oops).
I told her I'd appreciate not getting these any more, as this is a pretty humiliating call to have to make. She agreed and promised to fix my chart. I'll believe it in six months when I DON'T get a reminder letter!
It was a reminder letter for a follow-up mammogram and ultrasound on the biopsy I had at the end of August. The same biopsy that led my radiologist to recommend the bilateral mastectomy!
So, this morning, I had to call the radiologist's office to explain that I'd like them to correct my records because the breast they want to examine no longer exists! The receptionist I spoke to was very nice, and she even admitted that there is a note in my file that the radiologist had made the recommendation and that they should check with the surgeon before sending a follow-up notice (oops).
I told her I'd appreciate not getting these any more, as this is a pretty humiliating call to have to make. She agreed and promised to fix my chart. I'll believe it in six months when I DON'T get a reminder letter!
Thursday, March 6, 2008
What I did to you
This week I saw my surgeon for my 6-month checkup. Mostly it was lots of questions:
Any pain? Random twinges and pulls, some painful, but mostly annoying
Heart palpitations, racing or irregular heartbeat? Only during hot flashes
Side effects from the Tamoxifen? hot flashes, mood swings, big gray cloud over my head a couple weeks at a time, random periods...
Fun stuff.
As I expected, we talked about the reconstruction issue. She thinks I should see some good reconstructions and talk with some women who have done it after their mastectomies, not during. She also gave me the names of two surgeons to consult.
One of the reasons I like my surgeon is that she doesn't pull punches about what she does, and she always recognizes that, in the end, it's my body. So, she told me not to rush into anything, but she also expressed that , "What I did to you was brutal". And, living this way forever doesn't work for a lot of women. She also went through the process, that it will take several months and involves 3 outpatient surgeries and a process of stretching the muscle and skin from the inside.
We also talked about the prosthetics and my dislike of their feel, weight, and the whole fakeness of it all for me. I know that they work for thousands of women, but for me, I worry that I'd just always feel like people could tell I was wearing fake boobs, kind of like the tissue in the bra in jr. high!
I'm not sure yet that I don't feel the same way about implants, but I'll check it out and then decide. Mostly I'm just sick to pieces of thinking so much about a body part I didn't give much thought to at all before the cancer.
The Breastcancer.org site does a pretty good job, with personal reflections, of explaining what mastectomy does to women's psyche and the different ways women approach their post-cancer boob life (http://www.breastcancer.org/tips/reconstruction/index.jsp). Now, if they would just tell me what to do and make it easy to finally decide!
Any pain? Random twinges and pulls, some painful, but mostly annoying
Heart palpitations, racing or irregular heartbeat? Only during hot flashes
Side effects from the Tamoxifen? hot flashes, mood swings, big gray cloud over my head a couple weeks at a time, random periods...
Fun stuff.
As I expected, we talked about the reconstruction issue. She thinks I should see some good reconstructions and talk with some women who have done it after their mastectomies, not during. She also gave me the names of two surgeons to consult.
One of the reasons I like my surgeon is that she doesn't pull punches about what she does, and she always recognizes that, in the end, it's my body. So, she told me not to rush into anything, but she also expressed that , "What I did to you was brutal". And, living this way forever doesn't work for a lot of women. She also went through the process, that it will take several months and involves 3 outpatient surgeries and a process of stretching the muscle and skin from the inside.
We also talked about the prosthetics and my dislike of their feel, weight, and the whole fakeness of it all for me. I know that they work for thousands of women, but for me, I worry that I'd just always feel like people could tell I was wearing fake boobs, kind of like the tissue in the bra in jr. high!
I'm not sure yet that I don't feel the same way about implants, but I'll check it out and then decide. Mostly I'm just sick to pieces of thinking so much about a body part I didn't give much thought to at all before the cancer.
The Breastcancer.org site does a pretty good job, with personal reflections, of explaining what mastectomy does to women's psyche and the different ways women approach their post-cancer boob life (http://www.breastcancer.org/tips/reconstruction/index.jsp). Now, if they would just tell me what to do and make it easy to finally decide!
Tuesday, March 4, 2008
Checkups and Swimsuits
Tomorrow I see my surgeon for my 6-month post-op checkup. In one sense I can't believe it has been 6 months since the mastectomy, and in another, it feels like forever ago that everything was OK and I didn't have cancer.
Enough on that....
Spring is almost here and Summer will be here soon.
Swimsuit season! While I have been studiously avoiding the swimsuit catalogs this year, I want to pass along the name of a great company I've found that makes custom swimsuits and has been helping me to design a swimsuit top that will cover my scars and still be be girly, but will NOT have the oh-so-useless shelf bra or molded cups that most suits come with!
Wild Iris Custom Swimwear in Redding, CA http://www.swimsuit4u.com/ offers swimsuits for all body types, will add a pocket for prosthesis if you need, and has been unbelievably helpful in helping me create a swimsuit top that I'll be able to wear with my girls to the beach and the YMCA pool this summer.
Check out the site and be sure to tell Tina I sent you!
Enough on that....
Spring is almost here and Summer will be here soon.
Swimsuit season! While I have been studiously avoiding the swimsuit catalogs this year, I want to pass along the name of a great company I've found that makes custom swimsuits and has been helping me to design a swimsuit top that will cover my scars and still be be girly, but will NOT have the oh-so-useless shelf bra or molded cups that most suits come with!
Wild Iris Custom Swimwear in Redding, CA http://www.swimsuit4u.com/ offers swimsuits for all body types, will add a pocket for prosthesis if you need, and has been unbelievably helpful in helping me create a swimsuit top that I'll be able to wear with my girls to the beach and the YMCA pool this summer.
Check out the site and be sure to tell Tina I sent you!
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