A friend of a friend writes:
I was recently diagnosed with stage III endometrial cancer. Although my doctors are all extremely competent (a top-shelf cancer center), it is disappointing to discover that they do not always have crisp answers and the tests are far from accurate. I had no symptoms until recently and pre-surgery tests indicated I had pre-cancerous cells at worst. It wasn’t until surgery that they discovered “extensive” cancer in my uterus which has spread to the lymph nodes.
We now have a plan which seems to be pretty standard (Radiation and Chemotherapy), and my doctors discuss treatment as though they aim to eliminate the cancer entirely. But stage III doesn’t always have a happy ending and I want to make sure that I do everything in my control to effect the best possible outcome.
Any suggestions for e-patient resources? Best places to learn about the condition and treatment options? A good patient community?
I am interested in reading suggestions that people have
I had endometrial cancer stage IV, which is one stage worse than III, and last week’s PET scan was clean and clear, as they all have been for the two years since finishing treatment. I am told that after two clear years, chances of recurrence drop dramatically. So it can be done. I had surgery, followed by chemo and radiation.
In addition to the above I had acupuncture during the chemo (and still do) for both physical and mental support. I found the psychological battle more difficult than the physical one, so I rocked the woo-woo. I don’t call it “alternative” medicine, I call it supplemental. I had a reiki treatment the Sunday before each of my chemo treatments (6 of them, 3 weeks apart). A friend bought me a reflexology session once during my chemo, and it was glorious. At the beginning of each week, my Japanese husband made me a big bowl of hijiki (black seaweed) which I ate every day to keep up my red blood cells (it’s loaded with iron) and my nurses were stunned by the blood test results. I took a walk every single day except for maybe 4 of them, and it helped in numerous ways.
A site that really helped me for “community” was dailystrength.org, especially the journal by “mile high girl”, who also had endometrial stage IV, and who is now 5 years out:
http://www.dailystrength.org/people/154684
Stay strong through your treatments, keep fear in its place, take the weekends “off”, believe that every hand that touches you is a healing hand, and know that you can do this.
P.S. Here is some inspiration from a long-term survivor of ovarian cancer:
http://www.rockthesilver.com/rock_the_silver/cancer/
And that’s generally regarded as worse than endometrial, though close enough…
Rose Woodward….. Hi Dave – there is a very active Facebook Group that has ladies from all over – here is the link – also they have a website. http://www.facebook.com/WombCancerSupportUK
the ladies that run it are Deb and kaz – very knowledgeable and kind. there is a also “closed ” group behind their public FaceBook page so members can talk openly and freely , confident and secure their chat is with other patients only. Hope that helps.Womb Cancer Support UK
“Support page for women with womb cancer. Whether you are newly diagnosed, going …through treatment, a survivor or know someone who has been affected by this cancer, then please join us and share your experiences. Created on 11th April 2011 by Kaz Molloy, and run jointly with Debra Parry. We are base…”
Hi,
Below are some government and organization websites with some materials that might help you with your search:
MedlinePlus (has overviews, journal articles, tutorials, clinical trials)
http://www.nlm.nih.gov/medlineplus/uterinecancer.html
Womenhealth.gov
http://womenshealth.gov (you’ll find some information there, unfortunately the link was acting up so just click a-z health topics, go to ‘e’ and you’ll see the topic you seek)
National Cancer Institute
http://www.cancer.gov/cancertopics/types/endometrial
American Cancer Society
http://www.cancer.org/Cancer/EndometrialCancer/index
This is the closest I found to a patient community:
This website, http://www.uterinecancerawareness.com/ (looks like it is minimally updated), which led me to this facebook page:
https://www.facebook.com/groups/uterinecancerawareness/(which is active)
Hope this helps.
Myrna
Dave note: I’m going to post this comment but remove identifying info because this seemed fishy so I googled and confirmed that the “doctor” cited here doesn’t exist. I’m leaving it here as an example of vetting what you see on the internet.
It turns out there are numerous similar blog comments about this “Dr. A” on endometriosis blogs, usually a burst of several identical copy/pastes by one individual, similar to this one, over a few days. That’s fishy / spammy marketing, which no real scientist would rely on.
i have been following this blog for a while now and today i felt like i should share my story because i was a victim too. I had endometriosis for 18 years and i never thought i would ever get a cure due to the terrible symptoms i had and this made it impossible for me to get pregnant even after 12 years of marriage and it was a serious issue. I got to know about Dr. A—- who treated someone and the person shared a story of how she got a cure and let her contact details, i contacted Dr. Aleta and she actually confirmed it and i decided to give a try too and use her herbal medicine that was how my burden ended completely. My son will be 2 this december and i am greatful to God and thankful to her for medicine too. If you have (Endometriosis, PCOS, Fibroid, Ovarian cyst, Ectopic Pregnancy or any infertility issues) just reach her on (aletedwin @ gmail. com) she has professional advise and a cure too.
Oh, ha ha, in the back end I can see the IP address where this was posted from, and “Layla Forndez” is posting from Nigeria :) :)