Do you think gyn cancer runs in your family? Are you my cousin?
I was recently treated for endometrial cancer and, based on family history, I think that I probably have an inherited susceptibility for endometrial or ovarian cancer. I had myself tested for known cancer-associated mutations using the Invitae Cancer Screen, and I came out negative. Of course this could mean that my cancer wasn't caused by an inherited mutation, but it could also mean that my family has an unknown mutation that isn't on the test. This is what I believe, and I would like to figure out what it is (easier said than done).
This is particularly difficult since I am the only living member of my family who has had this problem. My mother and both of her sisters had prophylactic hysterectomy-oophorectomies 30 years ago because of the family history, so there's no way to know if my aunts are carriers of the mutation (fortunately for them).
I'm in the process of having my genome sequenced, but there's virtually no hope of figuring out what sequence might be involved in the cancer without other family members who have the same problem. More distant cousins, 3rd, 4th, 5th, are better for this than closer relatives. Since you share less DNA, it narrows down the regions that could contain the problem mutation.
The first person in my family who I know had this problem is my great-grandmother, who was born in Norway in 1873, and shortly thereafter immigrated to the US with her family. I'm interested in finding people who might be related to her (or her parents, grandparents etc.) and who have had ovarian or endometrial cancer. So I'm looking for people with some Norwegian ancestry. If you think you might be my cousin, I'd be interested in hearing from you.
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
@val64 I don't have Norwegian ancestry that I know of (thanks to 23andme) but I do have Northern European ancestry, including the Baltic States. My paternal grandparents were from Latvia. So, I could not be of much help to you. I can ask our Connect Director, @colleenyoung if she can move your new discussion to a place that more members might see it. Would that be helpful to you?
How are you doing these days?
My family has only had endometrial and ovarian cancer, so I think this is as good a place on Connect as any for this question. I'm going to ask the same question to people related to me on AncestryDNA and 23andme. I don't have high expectations of finding anyone, but you never know unless you ask. And some of my ancestors had huge families so there are probably lots of distant cousins out there.
I'm doing well (knock on wood). It's been about 10 weeks since my last cycle of chemo, and I feel about normal; my hair is growing in, although not quite presentable; and the only remaining annoying side effect is that my toes and balls of my feet are sort of numb. Thanks for asking.
I read most of your post, but thought I should tell you my experience.
When I had cancer, I was told by my chemo oncologist (who I love and did trust with my life), ALL GYNECOLOGIC OR REPRODUCTIVE ORGAN CANCERS ARE CAUSED BY THE VIRUS HPV. Thus, they are not passed through families. As well, it takes approximately 30 years after exposure to HPV for a cancerous tumor to form in the individual. One of four sexually active people will have HPV, but it is fought off in most people. Good news is that young people now are vaccinated against HPV by their pediatricians.
That's disturbing that your gyn would be spreading a falsehood like that. Many cervical and vulvar cancers are associated with HPV. To my knowledge, there is zero evidence that endometrial or ovarian cancers are. Feel free to cite any legitimate published sources to the contrary. And there is abundant evidence that Lynch syndrome increases the risk of endometrial cancer, and that BRCA mutations increase the risk of ovarian cancer (both without any association with HPV).
Oh, I am so sorry. I just did some researching, myself, and I did misunderstand my doctor.
What I just read was published by the NIH, I think (I'd have to check, again) – BUT, this info did make so much sense:
The cancerous tumors will occur at the cite where the HPV has previously infected cells, so things like the cervix, the penis, the anus, something in the throat (I didn't understand that bit).. And, that would exclude the organs and areas like those you mentioned.
Again, I misunderstood my doctor – he didn't put it to me when I could focus on what he was telling me – it was right after I was informed of my cancer and I was in a state of shock, really.
@val64 Thank you for clearing up the confusion of @tlyn. This is what I have read in the reliable sources such as Mayo Clinic and cancer.org. I was diagnosed with endometrial cancer in 2019 and already knew from earlier testing that I was negative for HPV.
Here is information on how HPV can affect the throat: