This week marks the end of my first month on tamoxifen. Tamoxifen is a “magic pill” that blocks estrogen uptake; for those of us with cancers that feed on estrogen, that means that the cancer would have nothing (or very little) to feed on, so it can’t grow. Tamoxifen is used to treat light cases of cancer (as if there were such a thing) and to prevent recurrence in those that have had surgery and other treatments.
Tamoxifen, tamoxifen, tamoxifen.
My friend L and I were talking today about the shroud of secrecy that has traditionally been drawn over personal medical treatments. Many of us grew up knowing very little of our family medical histories. They just didn’t keep good records decades ago, or maybe they just didn’t share them with anyone else. I suspect the latter, but there has to be some element of the former as well.
My grandmother died of “a female cancer.” Ovarian? Uterine? Something else? No one knows. No one ever knew. It just. wasn’t. talked. about. And then I got cancer. “A female cancer.” But mine is documented. There are records. There are memories. I have told my family and friends about my treatment. I have blogged it. So there it is, out in the open. Embarrassing? Perhaps. Even probably. But it’s out there, and anyone can see what it’s like to have treatment for cancer, or at least inflammatory breast cancer.
My sons will know their medical history. In fact, I think I’m going to write it all down for them (their great-grandparents, grandparents, parents, and uncles) later today. They should have it, easily accessible, anytime they need it.
And I will keep talking about the experience here, trying to demystify the experience and make sense of it myself. Saying the words and lessening the stigma. Breaking the shroud of silence.
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Thank you, Susan. Thank you. Being open in this way will be an incredible help and resource.
The Department of Health and Human Services has set up a website to help someone collect their family health history. The website is: https://familyhistory.hhs.gov/
This is especially important as we find out more and more diseases have genetic components to them.
Yes, yes! I was amazed to find out that no one knew what my paternal grandmother had died of, and she was only in her early 60’s!
What a useful and excellent thing to do, wm. That’s great.
I am glad you are open about this!
You are a brave, wonderful soul
This is a good idea to log it all down because as time progresses – matters of importance as such may hold the key to future therapies. Stay well
My Grandmother died of breats cancer. She never was treated. She knew she had it but did nothing about it. I did not know this until I was diognised. My Mom Never talked about it. She has never had a mamogram! ug I can get her to go. Any way my Grandmother was 75 when she died. I think of her everyday even though I never knew her. I often wonder what she would think about me and my battle. Perhaps she is cheering me on!
What you’ve done, I mean beyond surviving cancer, is incredibly important. When are you writing a book? Bet I’m not the only one wondering.
Bless you for not keeping silence. I have a funky little symptom going on, and because of you, I’m getting it checked out. I don’t think it’s cancer, but I’ll know for sure, because you urged all of us to pay attention to our bodies and not ignore the funky little symptoms.
You are your family’s chronicler, an archivist, a historian, a social commentator, and memoirist.
I am glad you’re talking about it. I am not glad that you are given the opportunity to talk about but I am glad that you are talking about it. I feel the same way as you do, I know very little about my family history. OR I knew very little. I’ve started asking and making sure I know so that I am prepared and my children are prepared!!
Susan,
I read the article in the Health magazine and I have read some of you post in the last month and half. My lovely sister-in-law of a young 39 has stage IV IBC. We learned of this in early April and like you she is a mother of two girls age 3 and 5. She has mets to liver and spine. She is at home in NY and being treated at Sloan. Your story gives us more strength and I know like you she is fighting a difficult battle. She has a great support system with friends and family. She has good days and some hard days. If you can suggested anything for us or for her we are just starting out in this IBC fight. I am in Fairfax-VA and I will walk June 3 with my daughter in DC and I will tell others about IBC. I want to make sure more $ goes to this cancer….
Thanks for your strength and help-
Diane
Good for you!
My dad died suddenly one night when he was 62. This was in the 80s; I was 15 at the time. We never had an autopsy done. Now I don’t know if it was a sudden massive heart attack, or an aneurysm, or what. We were just grieving, I understand why, but I wish we had.
I had a Great Aunt who died of a “female cancer” and my family still does not talk about what type. All my father will say is that she “just didn’t take care of herself”…How sad is that…a family that is afraid to discuss health issues.
I’m sorry you feel like there’s a “cloud of secrecy.” Of all the emotions I would imagine if I got cancer, embarrassment isn’t one I’d anticipate. I thank you for sharing your experience. It’s teaching a lot of people.
Yeah, I know what you mean. I know nothing of my family medical history. I had only heard that my grandmother had mental health ‘issues’. So, likely I got that from her. And my grandfather died of a heart attack, as well as my dad, so obviously that runs in the family. But that’s about it!! Except my brothers and sister and I communicate, so that’s good.
your blog is a valuable resource!
My aunt died from ovarian and breast cancer (the ovarian got her)… b/c she had the BRCA gene. It turns out our family all had to be tested – this is genetic. My dad is a carrier so I had to undergo DNA testing before I went ahead and tried to have a child. I do not have the gene (thank God). BUT- my point is that it is so wonderful now that things are out in the open and now there are tests that can tell you what you need to be looking out for, etc.
Thanks for educating me more on breast cancer!
My grandma and my aunt both died from “female cancers” too. Amen to bringing it all into the open. Cancer is bad enough without feeling shameful.
Chanced upon your site today. I wanted to send you a little good energy and female support.
Information and education is very very important. Share the wealth.
May you have good health and love.
Yup – my mother’s mother had breast cancer 2x. The fact that she had no breasts was normal for me and never a big deal in the family. It all seemed quite natural. But looking back now as an adult who would have found it useful to know more – no one in my family knows any more about her cancer than that she had it and “was fine after”. I couldn’t tell you if she had rads or chemo or any drug therapy. Even my dad doesn’t remember any of that. Cause they just didn’t talk about it. Seems weird to me, considering how relatively open we are now are still struggling to be. I’m sure glad we’ve been able to share your journey with you. Keep it up, amazing lady!