Glad to be here

Hi,

I am relieved to have found this organization and this community. Only people who are experiencing, or have experienced, post radiation health issues can understand.

[Blue_Hawaii]

Welcome to this lovely group I’m sorry you having the health issues, after having had radiation treatment

We are all here to support you

Hope you will join us on a Zoom meeting on 3 August at 7pm British time

I love the name x

[Hidden in reply to Blue_Hawaii]

Thank you, Blue Hawaii. It is such a relief to be able to have a support network.

[Mariecapp]

Welcome to the group. It is great support for people with PRD. It's been very helpful for me!

[Hidden]

Thank you, Mariecapp. PRD is not recognized in the U.S. yet. One thing I know for certain is that we have to be our own advocates, and not be bullied into treatments that we know are not going to work. I have taken the controls with respect to my health.

[Bathroomhunter in reply to Hidden]

I am also from the U.S. and the last eight years have been difficult navigating the healthcare system when no one recognizes PRD, crazy thing is, I am a healthcare provider myself. I literally had to go back to radiation oncologists and get her to communicate and educate with MD’s on the effects of pelvic radiation. She use to tell me, “it is the gift that keeps on giving”.

[Hidden in reply to Bathroomhunter]

I cannot understand why the US is so ignorant of this issue. It boggles the mind. The thing that really infuriates me is that we, the patient, are sent from one doctor to another with no solution because the underlying reasons are not addressed.

To be fair, people who had cancer in years past usually did not live long enough to have late-term effects. I guess it is up to us, and this wonderful website to educate and advocate. It would be nice if, in the future, there could be clinics devoted to post radiation treatment health issues UNDER ONE ROOF, staffed with doctors and nurses who are aware of these health problems.

[Bathroomhunter in reply to Hidden]

All you have said, I have too. How long has it been since last radiation treatment and when did you begin experiencing end results of radiation? I had vaginal cancer 11 years ago and other than proctitis and radiation colitis did not have real issues for four years, then the begin to progress over the last 8 years. Eight surgeries, multiple colonoscopies, GI, Urogyn, and ER visits later ended up getting an end colostomy, which has helped give me my life back.

[Hidden in reply to Bathroomhunter]

Hi Bathroomhunter. I had uterine cancer that was diagnosed in 2010. I was lucky in that it was caught very early. Had a complete hysterectomy, but in 2012 they found cells in the scar line. Had external beam radiation, and brachytherapy. Fortunately, my gastrointestinal issues have mostly resolved, but I have issues relating to frequent urination and irritation in the female area. Since I am postmenopausal, these can all be explained by lack of estrogen. I do believe, however, that they are worse due to the brachytherapy. You were really put through the proverbial ringer. I am glad that you are happy with the decision to get a colostomy. Quality of life is so important, and the medical community needs to wake up to this fact. Thanks for sharing your story.

[Bathroomhunter]

Yes, you are so right! I am glad you found this group as well.

[Hidden]

Thanks, Bathroomhunter. I hope things are improving for you.

[jude-the-obscure Community Pioneer]

Yes welcome! Its too hot for words here today so I will send more messages when it is cooler

Please read through some of the posts, bearing in mind that we are all different and respond differently. You're right - its good to know you are not alone and someone can empathize.

Best wishes Jude