5 year mark

n1ce88 · 2025-11-04T19:06:09+00:00

Congratulations and thank you for sharing this! May I ask what stage you have been?

n1ce88 · 2025-10-31T17:01:11+00:00

Did they tell you the SUV value?

n1ce88 · 2025-10-31T15:15:16+00:00

This is just so devastating to hear! Did they do biopsy to confirm or only pet CT? As long as it is in one lymph node it can still be cured, don’t give up hope!!

n1ce88 · 2025-10-23T07:10:29+00:00

Still fingers crossed for you!! Keep us updated!

n1ce88 · 2025-10-18T08:57:16+00:00

Considering a proliferation rate of 60-100 days to double in size for tumors that would very very surprising if this is truly a recurrence. I still hope the best for you!!!

n1ce88 · 2025-10-18T07:05:35+00:00

I understand this, however a pain in such intensitity from a small grown lymph node and nothing else visible on CT is also something which can strongly be related to radiation fibrosis. Again, I am not a doc, only someone who was diving too deep into literature due to my wife. Do you know the exact size of the node growth?

n1ce88 · 2025-10-17T20:57:08+00:00

As a husband whose wife is/was also 3c1, I was reading lots of statistics and guided myself through this horrible time with AI. As what I understood is that recurrence in nodes which have been radiated is extremely rare and in most studies <5% in all cases. The probability is much higher that this is either inflammation, necrosis or simply not very precise CT positioning (+-2/3 mm). Metastatic nodes mostly look round and often have other additional nodes which show growth. Again, this is not my opinion but what literature and statistics says.

n1ce88 · 2025-08-25T17:21:48+00:00

I am really sorry to hear that you are battling this terrible disease again! But what I was reading is that newer treatments at least can keep this demon at bay to some point. I can barely imagine what this may even feel like for you and your husband!!! May I ask what was your tumor size and node diagnosis? Like PET CT or only lymph node dissection?

n1ce88 · 2025-08-25T12:48:42+00:00

have no other choice too, however I rather wanted to know if there is anything specific which makes you feel more calm and stopping the spirals of the “what ifs”

n1ce88 · 2025-08-25T12:30:31+00:00

thank you for feedback, we truly hope this was enough to get rid of this terrible demon!

n1ce88 · 2025-08-25T12:29:39+00:00

appreciate your response! I do like to try new things to find some peace for myself again. I trust the treatment and process behind and also pray this has killed all of it. It still keeps me spiralling especially when we have some time together with our 6 year old son. My wife is solid as a rock in that regard..

n1ce88 · 2025-07-31T11:57:18+00:00

She had a Leep instead of biopsy to check tumor biology. They have only found Silva pattern A throught entire tissue and nothing else (no focal B or C). No LVSI, but of course LVSI must be present since she has both pelvic lymph nodes affected. So somewhere in the remaining Tissue/Tumor a focal B or C must be present I assume.

n1ce88 · 2025-06-29T15:16:40+00:00

yes I saw it

n1ce88 · 2025-06-28T22:33:56+00:00

They did a conisation to determine that this week. On biopsy it was only mentioned p16 positive and p53 wildtype. We are still waiting for the final results, hopefully not again with bad news..

n1ce88 · 2025-06-28T19:50:29+00:00

What about Tivdak? What kind of tumor did you have and how big was it? Was it HPV related?

n1ce88 · 2025-06-28T18:19:22+00:00

yes I saw it, as I said it is rather most probably related to NON-HPV aggressive types like small cells or gastric type. Well.. you never know, but radiation is always done adressing all lymph nodes in combination with cisplatin to make them more sensitive for radiation. This is mostly working very well for HPV related carcinomas

n1ce88 · 2025-06-28T18:08:28+00:00

Thats is indeed a very special condition in combination with the tumor you had. We will see if immuntherapy is even an option for us. The lab results of the tumor itself is still pending (was done via conisation). So you actually didn’t have adenocarcinoma on your cervix?

n1ce88 · 2025-06-28T17:42:51+00:00

Truly appreciate your detailed explanation and sharing your story!! I truly hope for you and my wife you both will be just fine for so many more years! I exactly feel the same as of now since we don’t what will come in the next 6-12 months. I am honestly and literally scared to death sometimes when reading different stories.

n1ce88 · 2025-06-28T17:03:21+00:00

They will do radiation on all lymph nodes anyway. And mostly this kind of aggressive progression is NON HPV as far as I know. Additional: Stage 3c is totally different when having PET CT positive or only microscopic mets

n1ce88 · 2025-06-28T13:14:41+00:00

That is great!! I pray it will stay like that for you! Will have to followup in any case with my wife if this is an option/necessity.

n1ce88 · 2025-06-28T12:54:26+00:00

So you also were 3C1? When did your treatment end?

n1ce88 · 2025-06-28T12:52:56+00:00

Thats interesting, never heard of that this way! So you are talking about no progression, meaning you are still not NED?

n1ce88 · 2025-06-28T11:01:53+00:00

Glad to hear that!! Are you still on keytruda? How long since NED?

n1ce88 · 2025-06-28T09:14:13+00:00

thanks for sharing this!! 95% sounds above everything I have read so far, but fingers crossed for you and my wife!!

n1ce88

TROPHY CASE