Post treatment support for monitoring side effects.

No those things we're not offered to me, but I've been very active on this and other forums and I've talked to other people who have had cancer (any). As a result I started asking for referrals. One of the drugs I receive can cause heart disease. I'm have to get echocardiogram all the time. The gynological oncologist was just getting the information off the radiologist report. I wasn't comfortable with that and I asked for a referral to a cardiologist. I have put all my aftercare together on my own. It's coming from 3 different healthcare systems. That's not preferable but it works. I also live in an area where we have great access to medical providers. Not everyone in the US has easy access to even primary care.
Personally I think every chronic illness she be treated systemically.
I heard on NPR that there is an effort in the beginning phase to get medical professionals to coach/teach nutrition and exercise. But the only way to get insurance to cover those area of care is to have more research so there is the body of evidence that is needed to get them approved as therapy

It is a patchwork system for me as well and I admit that I typically have every quirk checked out (after I wonder if I’m being paranoid.) But typically, I am the button pusher and doctor finder more often than my oncologist. Having cancer is an ongoing challenge that never ends, full of new surprises.

I was treated for vulvar cancer in may 2023. Received radiation & chemo. I was told what to expect during treatment. But no one prepared me for what lied ahead after finishing treatment. All the side effects were unexpected!! I had to learn & find this out on my own!!
Any comment?

So we have had similar post-treatment experiences. Let’s see if other women weigh in with a different, more positive stories.
I hope you are managing your symptoms as well as the emotional turmoil that goes along with it all. It can be a roller coaster for me.

I can't say I'm complaining, but the health system really isn't a system that is for patients. It's a system that is trying to keep the healthcare system alive. There is little money for care coordination. Some insurance companies will offer that as part of health insurance but those would be gold and platinum levels. Nothing like that exists for people with Medicare

Sad, but true. 😔
It’s every woman for herself.
We need to do our best to learn as much as we can and to advocate for ourselves.
This forum is part of that plan.
Thank you all for sharing & supporting!

Since having vulvar cancer I can say that things are different! Maybe this is the new normal for me!! I suffer on & off with itchiness, tenderness & inflammation in that area. Anyone else experience this & if so what do you use? Thanks for any advice!

I am fortunate that my oncologists have always been clear on short term and long term side effects of chemo and external radiation and brachytherapy. At every surveillance appointment they review any current medical issues and again review what future side effects to be looking for. When I have had some they’ve been quick to respond. What I have found most difficult was the emotional side of the end of active treatment that they didn’t prepare me for. The feeling of being left on your own to monitor for symptoms. To me there needs to be more preparation for this phase

You have been fortunate to have more direct doctor-patient communication than many of us. The emotional piece? I also struggle with this. I have spoken with some wonderful social workers from support organizations and even (finally) started to work with a therapist.
It feels good to dump on people who don’t patronize and who validate my feelings, but honestly? Every day I am reminded of my cancer because of side effects - and the fear of recurrence is often present. I try my best to keep busy and distracted, but it’s something that only those in similar shoes can understand. When I say something to family or friends, I see how I upset them. They like to think that I am cured and doing just fine. (I have learned to be a pretty good actress.) The oncology community has dropped this post-treatment ball as well. Thank you for bringing it up.

Thank you for your post!!
I feel the same. I pretend to everyone around that all is ok but the truth is… it is not. I live every day in fear of reoccurrence! I gave thought about therapy for a long time just to vent & let my fears out!
Never know what side effect is next! Is this my new normal?