Path is back

Mepic, the first thing that comes up when you google tamoxifen and endometrial cancer is an ACOG (American College of Ob/Gyn) position statement on it, written in 2000 and reconfirmed in 2008:

http://www.acog.org/Resources%20And%20Publications/Committee%20Opinions/Committee%20on%20Gynecologic%20Practice/Tamoxifen%20and%20Uterine%20Cancer.aspx

They discussed high risk women, as post menopausal, with polyps at baseline: I was 50, still in the perimenopause and loaded with polyps:

Other data suggest that low- and high-risk groups of postmenopausal patients may be identified before the initiation of tamoxifen therapy for breast cancer (17–19). Pretreatment screening identified 85 asymptomatic patients with benign polyps in 510 postmenopausal patients with newly diagnosed breast cancer (16.7%). All polyps were removed. At the time of polypectomy, two patients had atypical hyperplasias and subsequently underwent hysterectomies. The rest were treated with tamoxifen, 20 mg/d, for up to 5 years. The incidence of atypical hyperplasia was 11.7% in the group with initial lesions versus 0.7% in the group without lesions (P <.0001), an 18-fold increase in risk. In addition, polyps developed in 17.6% of the group with initial lesions versus 12.9% in the group without.

So, I had an 11.7 % chance of developing a premalignancy that requires hysterectomy. And they also state the risk is time and dose related.

I do think the endometrial pathology is understated, as in a prevention trial they write:

In the prevention trial of high-risk women, there was no statistically significant difference in endometrial cancer rates between women treated with tamoxifen and those in the placebo group in the women aged 49 years and younger; however, in women aged 50 years and older, the risk ratio was 4.01 (95% confidence interval, 1.70–10.90) for those treated with tamoxifen versus those receiving placebo. The annual rate was 3.05 malignancies per 1,000 women treated with tamoxifen versus 0.76 malignancies per 1,000 women receiving placebo.

Here's my gripe: the oncologists leave this to the gynecologists and quote 1%, when in reality the risk varies by age, time exposed and presence of polyps at baseline.

I really wish they got on the same page.

When I started tamoxifen, I was just 50 and not yet menopausal. And then, it stimulates your ovaries--similar to the fertility drug clomid--so my hormone studies--FSH/estradiol--kept showing premenopausal, and I kept bleeding, and it was never clear when I crossed the threshold into menopause and when it became menopausal bleeding.

I had seen a second opinion at Dana Farber, and he had suggested adding lupron to the tamoxifen to shut down my ovaries, and in retrospect, maybe that wasn't such a horrible idea...

But, hindsight is perfect.

I have sent this study to my oncologist who has a complete "hands off" approach about the gyn aspects of tamoxifen. If I'd known I had an 11%+ risk of a premalignancy that would require a hysterectomy, I think I'd have changed my decision about tamoxifen.

Obviously I'm upset, but I sure wished my oncologist act like the gyn issues weren't her concern. They weren't even in her note, the day before my third D&C...

I sent the position paper to my gyn, my onc and the gyn oncologist. They all act like this is a rare occurrence....Not so rare if you consider I was high risk from the start.

Cookie, it does raise the risk of leg LE, although thank goodness my gyn onc listened to me and didn't remove any lymph nodes. Some jerky gyn oncologists insist on removing all pelvic nodes if there is a question of endometrial cancer--which can be 40 or more nodes and leads to a 50% incidence of leg LE. The NCCN says to stage all women with endometrial cancer with the node removal (lucky, I was just short of frank cancer) , but if they're not staged, and they're stage 1, grade 1-2, they just say observe. I emailed her with this, and she took lymphadenectomy off the consent form, with her blessing.

I tend to have a bit of leg swelling, and wear 10-15mm socks when I work, so my LE therapist has me wearing them now, and she thinks my legs would swell post op anyway, and she wants me to keep them up and deep breath, and she'll be coming out to do MLD.

She can't work my abdominals, as I have these little incisions, and a lot of trauma in there, but she told me to stimulate the inguinals and deep breath.

Yep, proudtospin, I fell and broke my LE hand in 2010.

When I was in the hospital, my good arm swelled from a blown IV and my abdomen and thighs were swollen--I put on >10 lb of fluid in a day--so I was totally freaked when I came home last week.

The weight came off quickly, and I feel good enough to cause trouble, but I do get tired easily.

And I'm steamed, and at some point have to let it go.

Couple of what I hope are final comments on this:

1) I checked in with a nationally renowned researcher on adjuvant therapy, and this person stated that they do not change course due to endometrial hyperplasia or polyps on tamoxifen as they are "benign" and common and can be treated with a hysterectomy. This person writes the guidelines. Their current research is on extended adjuvant therapy and that's what they would be interested in discussing,even though they feel the benefit for me would be modest. Ah, academia....

2) I've been admonished to stop being so angry and focus on healing, and for me, I needed to understand the facts and to share them with my team. I do feel like I've educated my team, and myself, and for me, I need to work through it by understanding the facts, as much as I can find the facts.

3) I spoke to a wonderful nurse I work with, and she said "Stew for a bit, and then let it go" This is a woman who cares for the people that society doesn't tend to value: mentally ill, poor, homeless, addicts, illegal immigrants, with infalliable kindess and common sense. One of the many reasons I adore about working with her, is that she sees the problems, but never creates an "us vs them" attitude. And she's worked beside me through this process.

So, just like I needed to learn about LE, and figure out what could have been done to prevent it (no overhead lifting, etc), I needed to figure out the actual risks of tamoxifen for me, as I was blightly telling my gyn to quit worrying.

No Bright-Siding here: I haven't been "positive", because I felt quite upset.

As I always say: we don't ask our stroke patients to find their illness a blessing, why do we demand it of cancer patients?

I have a drawer where I stuff all the records, I mean to organize them, but it never happens.



Saw the gyn oncologist yesterday and we reviewed the path, she did ask if I'd seen it and for once I hadn't gotten it myself.



She gave me a copy for the record drawer.



A month after a D&C, there were multiple scattered areas of atypical cells, on an inactive endometrium, which means the bleeding I was having, right up to the surgery was due to the irregular cells. And tamoxifen had encouraged fibroids as well.



Had to be done. Wish I'd known the real risk



Outfield, hoping the scans are fine and I still don't see why you are the courier.....but now you have the disks.

Carol and Outfield , I totally agree that it's just too anxiety provoking to review the records and organize them.



I also learned a lot from reading the reports and op notes, etc.



The gyn onc is the first doctor I've had who read through the report with me and explained every item.



Normally I get the high lights verbally and then get a copy.