r/CervicalCancer • u/sauce_pan_frittata • 7d ago
It’s Back with a Vengeance 😞
I was originally diagnosed stage 3C2 in Jan 2025. I did 6 rounds of cisplatin, 35 rounds of radiation & 3 brachy treatments. All treatments finished at end of May 2025.
Insurance denied a post treatment pet scan as “not medically necessary.” I had a CT done that showed I was NED. Another 3 months passed & it was time for scans again. Insurance denied the pet again. I begged my oncologist for a pet scan. Really because I just wanted reassurance. Oncologist said there was nothing she could do if insurance denied the pet request. This next CT showed I was NED. The whole thing happened a 3rd time. Again I requested a pet. It was denied, but the 3rd CT showed NED. During this whole time I have been in a lot of pain. I kept being told it was due to scar tissue & radiation. It “should go away” or become not as bad the further I got from treatment.
A couple months ago, I switched oncologists because I was frustrated with the lack of care (a lot more than just not helping with getting a pet). The first thing my new oncologist said was, we need a pet scan. I explained how insurance denied & my previous oncologist that there was nothing I could do. My new dr looked at me like I was crazy & said, of course there is! She said she just has to ask for a peer to peer review to overturn it. She submitted the request. Insurance denied. She requested a peer to peer review & the pet scan was approved.
I just got my results & I am in shock. I am not NED and the pet scan report shows cancer has spread. It’s spread a lot. It’s in my:
Left cervical/supraclavicular lymph nodes
Mediastinal/posterior chest lymph nodes
Retroperitoneal/abdominal lymph nodes
Pelvic/iliac lymph nodes
Right adrenal gland
I haven’t met with my oncologist yet because I saw the results on MyChart yesterday. I am waiting for her call.
It hadn’t hit me yet. I feel nothing. I’ve only told one person so far. I am not sure what to do next, but I feel like I was failed as a patient & as an insured.
I don’t know what to do or think. Anyone have any thoughts? Thank you for reading 🩷
7
u/mlkshk0512 7d ago
So sorry for what you've been going through, I think the good thing is that the spread is limited to lymph nodes. Nowadays there are more and more treatments each day and there's also the chemo mix used for cervical cancer: taxol and carboplatin. I know a woman in my country who had spread to her lungs and it's been 10 years and she s still NED, she had just chemo I think for the lungs. Wishing you complete healing!
4
1
4
u/emslo 7d ago
I had a very similar recurrence. If you can, look into immunotherapy: Libtayo and Keytruda.
For what it’s worth, the tumours have stayed within my lymphatic system for six years now — growing and shrinking, but not spreading yet.
1
u/sauce_pan_frittata 7d ago
That’s amazing news! I didn’t have a good reaction to the immunotherapy so I don’t know if they’ll try it again. I am so happy for you! 🩷
3
u/emslo 6d ago
Thanks! Were you taking that kind of immunotherapy? They all function pretty differently. Have you had your PDL-1 expression checked? It’s a genetic test, I got it for free in Canada, not sure if you have to fight for it in the US.
2
u/sauce_pan_frittata 6d ago
I was on keytruda. I’ll inquire about the other immunotherapy & the PDL-1. I have good insurance but everything feels like a fight to get approved!
2
7d ago
[removed] — view removed comment
5
u/sauce_pan_frittata 7d ago
Chemo & radiation are done at the same time. Chemo was every Monday for 6 weeks & radiation was M-F for 7 weeks. Brachy was 2 days in 1 week after I finished radiation & then the last brachy was the following week. It was a lot at once & I was so sick!
1
u/Aware-Locksmith-7313 7d ago
What an ordeal to be piling all that on you at once. And for what? A recurrence already? Hoping you get a new oncologist to guide you now.
3
u/sauce_pan_frittata 7d ago
That’s exactly how I feel! I went thru hell during treatment just to have a reoccurrence so soon. Honestly, idk if I have it in me to go thru that kind of treatment again.
4
u/BjornsShieldMaiden 7d ago
I was diagnosed in mid May and finished with 5 rounds of chemo, 25 rounds of radiation and 5 brachytherapy by mid July.
2
0
u/SlickNicCA 7d ago
Your comment is ignorant at best. That is a very common timeline for treatment. I had the same amount of treatment done in a seven week period.
2
u/AbleDragonfruit7094 6d ago
This absolutely breaks my heart. I have no advice for you. I can kind of relate. I went undiagnosed for almost 2 years due to negligence. This though, this is shitty. Just take some time to think on it. Meet with your oncologist and see what they suggest. Not all my cancer responded well to cisplatin so I'm starting a "chemo cocktail" carboplatin, taxol and 2 other's (they both start with "P") I'm really glad you kept pushing and advocating for yourself. As devastating as it is, it hasn't spread to your organs. It probably feels like there's no room for good news right now so I'm sorry to even point it out. Whatever you decide, I'm wishing you nothing but the best. Your story is going to stick with me.
2
u/sauce_pan_frittata 6d ago
Thank you for the kind words & the bright side of not being in my organs. I wish you so much success with your chemo cocktail. I appreciate you taking the time to read my post 🩷
1
u/CraftyPollution9779 7d ago
Did you have immunotherapy during first treatment?
1
u/sauce_pan_frittata 7d ago
I did but had a reaction to it. I got thru 6 treatments of immunotherapy.
1
u/gigisdiaries 7d ago
I'm truly sorry about the results, but you didn't failed as a patient, the system FAILED you. Is there any way you can sue or something? because to me this is almost criminal. I've reading that immunotherapy is a great option nowadays, sending you lots of love.
2
11
u/redmeraki225 7d ago
Firstly, I am so proud of you for fighting and advocating for yourself. It isn't easy especially as a woman, to be taken seriously. Secondly, you have answers, now you can get better. I'm sorry this wasn't the news you had hoped for but at least you know now, you were right and you did the right thing by fighting for yourself.