Door number two?

Today I see my gynecologist and discuss what to do about my ovaries . . . really.

I can’t make a decision without more information. I am still waiting to get the genetic testing (testing for the BRCA genes) that I need approved by my insurance company. If I am BRCA positive, then my chances of developing ovarian cancer are very high. And, it would also mean that my breast cancer was of a genetic cause. My familial connection to cancer is strong enough to present a pretty significant risk of developing cancer (wish I had known that before now, oh well).

I presumed that my only risk factor was the fact that my aunt had breast cancer. But, I found out through genetic counseling that the fact that there is prostate cancer on both sides of my family – and at the same level generation wise (my father and my uncle – my mom’s brother) increase my breast cancer risk significantly. This is information that has been known for many, many years – the connection between a history of prostate cancer in one’s family and daughters and nieces developing breast cancer. Prostate cancer, like many breast cancers, has a hormonal link. In fact, both types of cancer, breast and prostate, can be treated with hormones (not always, but, it is often part of or all of the treatment depending upon the type of breast cancer or how far the prostate cancer has progressed).

In addition to the prostate cancer history on both my mother and father’s side of the family, there was likely a cancer history with both of my grandfathers. I am less clear on that, but, pretty certain that both had cancer. My maternal grandfather had some type of abdominal cancer. And my paternal grandfather – we believe – may have had colon cancer. I am not so sure about that one. I know that he had part of his colon removed, but, not positive if it was for something like polyps or some precancerous condition or if it was in fact for cancer.

In any case, there is a significant cancer history, especially the prostate cancer on both sides and my aunt’s breast cancer, that increase my risk of getting breast cancer.

Still, without knowing whether I am BRCA positive or not really leaves me unable to make a decision about having a hysterectomy. If I were BRCA positive then I would most definitely have my ovaries out. My oncologist does not want me to have my ovaries removed unless I am BRCA positive. In fact, she even suggested that I consider getting pregnant as it has protective effects in helping to prevent a cancer recurrence. That is not a likely scenario for me at this age and with all I have been through physically . . . I can’t imagine that I would handle a pregnancy well at this point. But, she has told me to keep that option open . . . hmm . . . chemotherapied-45 year old eggs? I don’t think so . . . I wonder if she forgets my age, I don’t know. But, I don’t think it is in my future.

One of the ways you can help reduce the risk of a recurrence of estrogen positive breast cancer is to have your ovaries removed (so you will produce less estrogen, a lot less, but, it surprisingly does not completely eliminate the production of estrogen in your body). Since removing your ovaries does not entirely eliminate the production of estrogen in your body, you then have to take another drug on top of having your ovaries removed to get the “desired” effect. The drug I would have to take is called an aromatase inhibitor. It prevents the production of estrogen in post-menopausal women. It also causes bone loss and bone ache. No thank you.

Another way, the preferred way, according to my oncologist, is to take Tamoxifen for five years. Tamoxifen does not prevent the production of estrogen in your body. Instead, it blocks the effect of estrogen in your body. And, it is temporary. So your body goes back to whatever should be normal for you after you stop taking it.

The Tamoxifen has been hard on me and I have yet to get myself up to a full, 20 milligram dose (so far have only adjusted to a 10 milligram dose . . . but, I have some thoughts on that . . . it is unclear whether 20 milligrams is the appropriate dose as no studies have EVER been conducted on what the proper effective dose should be. It is known that 40 milligrams can be toxic and that 40 milligrams is no more effective than 20 milligrams. But, no one has ever studied whether 20 is better than 10. I can tell you that 20 does not feel good to me, I get so upside down with that dose, yet, 10 milligrams I can handle. So, I may never up it to the 20 (even though my oncologist really wants me to). I want to be a good patient, but, I also want to be able to function and with 20 milligrams I am so dizzy I can’t get up. So, I keep moving back down to the 10 milligram dose.

So these are a couple of my options. And, I have different doctors trying to convince me of one option versus the other. So, door number one or door number two? Neither is entirely attractive to me. So, I don’t really know.  But, the choice could absolutely be made for me – if I were to find out I am BRCA positive -then I would most definitely have my ovaries removed. That is a no brainer for me as the chances, if I were BRCA positive, of developing ovarian cancer would be very high. But, if I am not BRCA positive, then it changes the picture for me. So, I really do need to know more about this before I commit.

Well, that was a ramble.

So, back to my gynecologist appointment. She is going to want me to make a decision about at least one of my ovaries. I had a cyst on my right ovary. It is pretty common to have a cyst. And, I have likely had this most of my life, off and on. But, because of my cancer history there is a concern that what appears to be a benign cyst could turn into something else. Hence, my gynecologist’s interest in having the ovary with the cyst removed.

Apparently if you remove one ovary, your other one compensates – goes into overdrive so to speak. And, as a result, you do not feel a jump-off-the-cliff-instant-entry-into-menopause. So, at this point, I could have the right ovary (the one with cysts on it) removed and I would not feel any different.

But, if I were to remove both then I understand that it would be pretty difficult to handle. Typically a pre-menopausal woman enters menopause gradually. I have not had any real menopausal symptoms (except when I was going through chemotherapy – during that time I was in what they call a chemical menopause – something that many women never leave even after their chemotherapy ends). In my case, I returned to normal cycles about three or four months after chemo. At the time I remember sort of celebrating that, thinking that it was a good thing, that my body was sort of saying F you cancer. But, when I told my oncologist, she was not so thrilled because it means that I am right back to producing normal amounts of estrogen. And, since the cancer I had was fueled by estrogen, she wants me to have less estrogen in my body. So, I don’t really quite understand why a pregnancy would help reduce the risk of recurrence as I am sure you don’t stop producing estrogen during a pregnancy. But, I guess there are other hormones during pregnancy that play a role in reducing your breast cancer risk and risk of recurrence.

I am quite certain that I am not having a baby at this point in my life. But, what this discussion with my oncologist did underscore for me is the strong hormonal connection to the kind of cancer that I had . . . and that it is pretty important that I take Tamoxifen.

And, I probably should try harder to get my body adjusted to that 20 milligram dose (I go back and forth on that a lot – whether 10 milligrams is enough . . . there are preliminary findings – in Europe – that even 5 milligrams of Tamoxifen may have offer as much protective effects as the 20 milligram dose . . . research is currently going on here in the US to determine the best dose . . . but, by the time that is sorted out, I will be past even taking Tamoxifen . . . but, at least it is something that will be known for future patients).

So, I need to leave soon to see my doctor. Hoping that I don’t get some biopsy or some other annoying, but, “necessary” procedure done today.

I really don’t like that . . . going into to see her and then it becomes something like this: “You know, I just want to be sure, so let’s go ahead and do an endometrial biopsy today, okay?” Lovely, I found out . . . after I said yes to that one . . . that they can’t use any anesthesia or anything to numbe you when they do that. But, it is “quick” . . . ugh.

I really wonder sometimes whether all of this is truly necessary. I mean it is pretty compelling to have a specialist tell you that they want to run a particular test, just to make sure, etc. It is hard to turn down these things. But, sometimes you just have to or else you feel like you are completely at their whim all of the time.

Today I will go with the flow and try to keep an open mind, but, also be willing to simply say no, not today.

And, perhaps I will get a little bit closer to deciding whether I pick door number one or door number two.

Well, wish me luck.

Much love,

Lisa

Related Articles

• October Is National Breast Cancer Awareness Month (zocdoc.com)
• Ovary Removal, Mastectomy Cuts Cancer Rates in High-Risk Women (businessweek.com)
• Removal of breasts, ovaries can cut cancer risks for some women, study says (seattletimes.nwsource.com)
• Thinking Pink Hasn’t Helped Find Causes of Breast Cancer (health.usnews.com)
• You: Breast, ovary removal found to raise cancer survival rates (latimes.com)
• Dense Breasts Linked to Breast Cancer Return (webmd.com)