How are you managing long-term effects of pelvic radiation?

The creams do help with the irritation and swelling for a few hours. I find on the days I work both jobs are the worst. I am glad you have a supportive spouse!!

Any comment from anyone?

Any comment anyone?

Also was NOT told of Any Long term side effects at all. Only told of possible side effects during radiation. Never ever mentioned, even afterward, nothing, except, oh yeah, I was presented with a "dilator" and told use for up to 5 years, as soon as my last bachelor treatmentt/internal radiation treatment was over. I mean, as soon as I was dressed, presented a "gift bag!" ...and nurse informed me. Had to use, and I had very specific conversation 2 weeks prior to internal radiation cause I didn't think I wanted it. Unreal not one word of any of that or before starting radiation at all. It really should be illegal to not go over all of that, pretreatment, not post, cause then its tooooooo late.

I had external radiation for 7 weeks & 2 sessions of chemo. Was told it would be painful since your vulvar is a very sensitive area! No mention of what the vulvar would feel like after treatment! My skin has never been the same & suffer with tenderness & itchiness. I’m told this is the new normal!! Is that true??

These stories are disgraceful!
Is it because we are women and most providers are male? Knowledge is power and the power was not given to us. Then, once we started with post-treatment struggles, there has been limited support for us. What we don’t know can hurt us. 😡

What are our alternatives?
It is sad! Are we supposed to just accept what cards we’ve been dealt? I’m upset I have no control over my body anymore! Any comment anyone?

Well, the alternative is to forego radiation and opt for chemo only.

I chose radiation & chemo but after 2 rounds of chemo I ended up in the hospital! So what are our choices? Thought I was being proactive.

The decisions that we have to make are difficult ones. I took every treatment option that was thrown at me because of the aggressive nature of my cancer, knowing only a little about the possible after effects. Was I pushing the can down the road, trading one issue for others? How would I have known which side effects would get me? It was a gamble for an inexperienced gambler. I think we all did our best under the most stressful of situations, but if you’re like me you feel somewhat abandoned.
PS: The dilator surprise! For the rest of my life?! That should have been my first clue.