Door number two?

8 Oct

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

5 Responses to “Door number two?”

  1. Sandy October 8, 2010 at 11:53 AM #

    Good luck with your appointment today. If you feel like it, give me a call after and tell me how it went.

    I enjoyed seeing you yesterday. Please thank your parents for lunch.

    Love,
    Sandy

    • cancerfree2b October 9, 2010 at 6:28 AM #

      Dear Sandy,

      I didn’t see your message until pretty late last night. I will call you today (Saturday). The appointment went fine . . . I got out of there without any pain . . . so that is good. And now it is the weekend . . . yay!!!

      I enjoyed seeing you Thursday also. I had a great time (in spite of my medical appointment . . . ugh). My parents were happy to buy us lunch and they greatly appreciate your driving me to so many appointments (as of course, have I). You are such a wonderful woman and I am so grateful for your friendship.

      Much love always,
      Lisa

  2. Sally October 8, 2010 at 8:34 PM #

    Wow, what a lot to be faced with, trying to know the best route. I hope the appointment wasn’t too jarring, and better yet, held something encouraging.
    Lisa, about your Aunt Anne’s cancer. Do you or your Mom know hers was genetic? I attribute it to lifestyle–alcohol and blackened steaks.
    Love,
    Aunt Sally

    • cancerfree2b October 9, 2010 at 2:37 AM #

      Dear Aunt Sally,

      The appointment went pretty well. Oddly enough, my gynecologist completely forgot about our ovary discussion (in our prior meeting she made a big deal about it and told me I had to make a decision soon). In this meeting she didn’t say anything about it. As I was leaving the appointment I told her that she had wanted me to do a follow up ultrasound to check the ovary with cysts. She looked over my chart and then just gave me an order for the ultra sound and sent me on my way. She was running about an hour behind yesterday, so I think she just forgot, was busy etc.

      Anyway, I got out of there without any biopsy or any discussion of anything . . . which was all fine by me – plenty of time to discuss that with her on another day.

      I don’t think I am BRCA positive and I don’t think it runs in our family. I agree, I think that Aunt Anne’s breast cancer was likely due to lifestyle (the alcohol and the blackened steaks). I almost typed that yesterday in my blog post, but, thought better of it because I didn’t want to offend anyone . . . but, I certainly remember the regular barbecue and drinking and I know that both of those things can really increase one’s risk. Couple that with the fact that her sisters (you and Mom) have no history (thank goodness) and I think that it is not likely that BRCA is in our family.

      I am not sure of the kind of breast cancer that Aunt Anne had. She may have had inflammatory breast cancer . . . which comes through in the form of lesions in the skin. Horrible.

      I personally think that mine is environmentally caused. And, perhaps it was influenced by diet too. I was a vegetarian for several years . . . ironically to reduce my risk of breast cancer. I ate a lot of tofu and soy products which are phyto-estrogens. In your body, phyto-estrogens act like estrogen. I am not positive of the connection, but, since my cancer was estrogen responsive, I am not supposed to eat any phyto-estrogens now and I am supposed to avoid dairy because it has estrogen in it as well (from lactating cows). I can only guess that if these foods are bad for me now, that it may have contributed to my getting it in the first place? I drank so much milk everyday for so many years. I don’t know, but, it may have been part of my cancer equation.

      I also had several exposures to chemicals in my work place as well as just living in orange county – adjacent to orange groves and lots of pesticides. Some of us are simply more sensitive to chemicals around us. I remember being the one kid that would get sick from smells and odors, while my friends would not even be able to smell anything. So, I think it was my body telling me to get away from the odor.

      Also, the typical onset of HER2 positive cancer is in a woman’s sixties. When there is an early onset, as in my case, it is thought by many to be environmentally caused. But, who knows.

      The genetic counseling session I had was fascinating. While the counselor recommended that I have the BRCA testing (as I meet the national guidelines to have this test) she also stated that she felt that I was not likely BRCA positive. She said there was a “familial link” . . . I am not sure that I really understood what that meant exactly. But, I believe she meant that there was a family history, in particular of prostate cancer, that would give me a higher chance of developing breast or ovarian cancer.

      I had never known of the prostate/breast cancer link before. But, apparently both have a hormonal connection. Interesting. I remember her really making note of the prostate cancer on both sides of my family as being significant.

      She told me that she really did not think I was BRCA positive. But, she said there was enough of a familial connection (still not exactly sure what that means, I guess I should go back to materials she prepared for me to know what that means) to warrant getting the genetic testing.

      Also, I remember one thing that she said: the fact that my cancer diagnosis came before 50 indicated a slightly higher likelihood that I was BRCA positive . . . still, on balance, it seems that it is more likely that I am BRCA negative.

      But, I need to get this checked out, not just for myself, but for everyone in my family.

      Yesterday in the doctor’s office I read that breast cancer is the number one cause of death in women between the ages of 20 and 59. Unbelievable.

      Julia is 18. So, I think I definitely want to get that test done. I am sure she will be fine, but, I do worry about her and her first year of college now and . . . drinking. I need to have a little chat with her soon.

      Thank you for your message. And, yes, I am sure Lake Michigan is not dissimilar to the ocean. I hope to see it someday.

      Much love to you,
      Lisa

  3. Sally October 8, 2010 at 8:37 PM #

    P.S.
    I enjoyed Chemobabe’s blog.
    P.P.S.
    I love your ocean sunset photo and peach/coral background. My screensaver is a Lake Michigan sunset, not dissimilar to the ocean.
    Sally

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