One of the most destructive emotions in my life is regret. Thankfully, I don’t have many decisions in my life that I would change if I had the chance. But there is one big medical one that I question daily: my decision to have my ovaries removed 18 months ago to put me into menopause and remove/significantly decrease some major hormones from being produced in my body.
In consultation with my oncologist, after chemotherapy was over I decided to take ovarian suppression injections. My period had come back within a few months of chemo ending even though I was in my late 30s. I was not going to have any more children. The tamoxifen I was taking had already started giving me ovarian cysts and I needed numerous ultrasounds to monitor them. Ovarian cancer was always in the back of my mind.
After one year of the injections (in which a thick needle is plunged under the skin of your belly and a small pellet of medication is placed which dissolves slowly over the course of one month) I decided I wasn’t going back; I couldn’t tolerate the questions every month with a menstrual cycle and hormone fluctuations. With my kind of breast cancer (estrogen and progesterone receptor positive), any remaning cancer cells in my body would be “fueled” by these hormones. I wanted to minimize them, and hopefully reduce my chance of cancer recurrence.
And so, after the year of injections I consulted with some surgeons. They felt that the ovary removal (oophorectomy) would be no harder on my body than the injections I’d already been taking. I had laparoscopic surgery in December of 2008 and felt good about the aggressive stance I was taking.
Then my world caved in. Within weeks of the surgery I was depressed. My hormones were bottoming out. Not just the estrogen and progesterone, but other ones the ovaries produce. I was plunged into menopause and all of its agony overnight. My hormone levels went not to the point of a menopausal woman (there are still some hormones present) but as my oncologist told me “of a prepubescent girl.”
I was depressed. I cried constantly. I was still getting over the surgery itself (not exactly the “walk in the park” that had been described to me) and had to miss the family Christmas vacation that year. Clarke and the 2 older kids went to Wyoming while I stayed with Tristan and tried to heal and regroup.
The joint pains started, the bone loss continued, the depression loomed. I had to watch my cholesterol numbers and must take osteoporosis medication after breaking ribs in a fall. I have sexual side effects that can’t be remedied with estrogen creams or pills. In the future I worry about the increased risks of dementia, heart disease and lung cancer without the protective benefits of estrogen.
But worse than any of them, the migraines began. I’d never had them before, but the overnight hormone drop brought them on fast and furious. Up to 15 a month.
It really is “always something.” Each decision is not isolated; everything I do to my body has ramifications and risks. I don’t know if I would have made the same decision if I knew what pain I was bringing on myself. All I know is that fear is a motivator. At the time all I could think about was the cancer. I felt that anything I could do to decrease the chance of my cancer recurring was worth it.
Some days I’m not so sure about that. I believe the doctors I consulted vastly underestimated the effect that this surgery can have. Perhaps as more women electively remove their ovaries if they test positive for the BRCA-1 and 2 genes we will learn more about the effect it has on our bodies (I have tested negative for both of those genes but it is a main reason women opt to have oophorectomies).
There’s no way to know if I made the right decision.
If my cancer stays in remission I will feel better about my decision. But as side effects mount and long-term health issues occur throughout my life because of this surgery and its repercussions, I can’t help but question if my fear may have pushed me too far.
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Hi Lisa, I just wanted to say thanks for writing it all out. I had been surfing the web trying to figure out why I wake with headaches, can’t concentrate, am anxious, depressed… you know what I am saying. Had the oophorectomy 4 months ago. The oncologist downplayed it big time, even made it sound like a positive when compared to the Lupron shots. It’s too bad there’s not more help for estrogen positive women who get thrusted in to menopause this way. Anyway, thanks again for sharing what you went through.
Bless you… I feel your pain on the surgery side effects. The deoression and joint pain are the worst. I am praying for daily.. Praying you are MUCH better now;)
Lisa,
OMG, I was looking for a site that women who are NOT ‘adjusting’ to these surgeries can be heard. And you have it!!!. I was diagnosed with DCIS in 2010. Although a positive outlook it was anything BUT….I had a mastectomy, which I DID NOT WANT but was the only thing that 2 doctors would perform because I was small breasted and had a MRI measure DCIS of 6 cm (pathology showed 4.8cm – distorted view of the MRI was due to 16 core biopsies that produced inflammation). I too had a 100% ER positive tumor pathology. After the mastectomy I had genetic testing which came back as BRCA2+. No one in my family had ever had ovarian cancer ( I have contact with family that spans three families with a total of 21 siblings and two parents). The doctor said that did not matter. The doctor also said that it was NOW recommended to have a full hysterectomy because of the residual fallopian tube tissue imbedded in the uterus and that they cannot guarantee that they get all of the fallopian tube tissue. I consented for a hysterectomy with ovaries removed and regret it to this day. I confronted by gyn/onc surgeon about the removal of my uterus and cervix and she lowered her head and said ” I wish I hadn’t removed your uterus”…..she never said anything about the residual fallopian tube tissue. She then said, “I am not one of those gynecologist that remove uteruses for benign reasons”……… and I thought “you remove uteruses for NO reason”….. Removing the uterus and cervix, as I learned, alters woman’s genital anatomy and decreases her sexual response capacity. All I was told about the sexual impact was that I would need to use lubrication and would not have uterine orgasms. I realized it was MUCH more than that. Even though, I was 53 years old. I had not had a full year of no periods. I did not have the problem with hot flashes but had a major problem with emotion swings, especially anger. I was told that I needed to see a psychiatrist to see why I cant let go of my uterus. I did try various therapist at a personal costs of well over 2000.00. It just takes time to accept the loss, the medically unnecessary loss…..The only thing that is a positive, is that I do not fear cancer as much as I fear the damage that doctors can do. So I am wiser and I am doing whatever I can to warn my nieces, sisters and friends of the impact of this surgery.
How are you doing now? Has time made anything better? I am currently being faced with this decision.
I think you reach a point of acceptance. You will never be the same. I know people may think that is negative, but it is true. My biggest loss is loss of desire for life in general. Not that I am depressed, I just don’t have the level of desire I had before. And I am not just talking about sexual desire, also the desire to interact with people and enjoy life. I am single and have no desire to find a companion. I would not have the surgery unless my pedigree is VERY STRONG for ovarian cancer. If you are a BRCA mutation carrier, I would find out what your mutation location is on the DNA strand. You may find that your risks are not as bad as the docs say. I later found out my REAL risk was around 7.9 – 11%, not the stated 15 – 27% risks that doctors are stating.