Recurrence or new cancer!

WesG said:

I recently had another PET scan and am scheduled for a biopsy. I am naturally more concerned about the possibility rather than metastatic cancer, than lymphoma. it would be unusual for SCC to bypass typical metastatic pathways and affect lymph nodes in the groin. However it appears that it might be the case. 

It’s very unusual 

I have a friend who developed lymphoma after she finished treatment for OPSCC

She had treatment and she is well. 

Glad to hear your friend is doing well. It's blown me away. I have been doing so well following finish my treatment and felt very lucky with my outcomes following my previous treatment. Hopefully things will turn out okay. 

Hi WesG

Im so sorry to read your message I can only imagine how your feeling right now.We all hope that after treatment thats it the end ……. for many it is but for a as for others it’s not.

It does seem really unusual …I hope that once you get the results from the PET scan and biopsy that your team can start with the best option to treat it

Sorry I can’t be more helpful sending you a big hug 

Debbie

Hello WesG, 

I am currently going through something very similar. In November this year, I had my PET scan to see if treatment was successful for HPV16 T2N1M0 left tonsil SCC metastatic to lymph node diagnosed June 2024. Scan showed complete metabolic response to treatment, which is fantastic, then came the ‘but’. The scan picked up a mass in my ascending colon and my oncologist had to get a second opinion. I was also put on the 2 week wait referral for a colonoscopy. Second opinion said that they suspect I have an adenoma carcinoma. At my colonoscopy last week, the surgeon informed me that the tumour is too big to remove or biopsy via the colonoscopy and I need to have surgery to remove part of my bowel. 

None of this has sunk in yet. It’s all happening so fast. I had full body scans in June prior to treatment and my lower body area was clear. 

Rest assured, we are in the absolute best hands. I am positive that I will overcome this as will you too. All the best WesG. 

Hi it’s very unusual I too know the lady  Dani is referring to she had hpv. Tonsil cancer but within a year also had  lymphoma a totally different cancer to her tonsil cancer. She made a good recovery and then her hubby got prostrate. As she says they were unlucky. But are both in remission. Fingers x for you. 
Hazel 

I was diagnosed SCC in December 2019  ...in my Tonsils.....I had 3 surgeries and it was in 2 of my lymphnodes  that biopsied positive.... had them removed and had 35 rounds of high dose radiation ...I have been fine ever since ...with exception of swallowing issues and muscle issues in the neck at location of of radiation 

I'be been booked for a biopsy on December 27th.

I feeling frustrated lots at the minute, this was discovered by a GP referral, however since it was confirmed I have cancer, they just don't know which one yet, i've hread nothimg from my head neck team,  they where made aware the following day. 

I expected some kind of follow-up once they were informed. Aside from one admin call, which I contact her first to see if they had received the information from my GP. It's been silence. My Oncologist hasn't made one call to talk about next step or anything. 

Normally, my team is incredibly supportive, so this lack of communication feels unsettling. I understand they’re busy, but a simple message like "We’re aware and here for you" "this is the plan" would have made a difference.

Uncertainty is hard, but silence makes it feel heavier. I don't know if am I'm expecting something that unrealistic or unneeded until they know more from the pet and biopsy, but I felt like a call would of been good. 

100% on the uncertainty. 

Is there a way for you to contact them directly? 

Do you have an email or number to call your Cancer Nurse Specialist? If so give them a call email asap .

They are all super busy but my CNS has also supported me with getting in touch with my neorolgy team after a diagnosis of a currently benign brain tumour  ..I felt like a headless chicken after being told within the same 30 mins that treatment had been successful for my T4 Nb2M0 +16 tonsil cancer but my MRI had shown a brain tumour and would be called by a neurologist to explain what they had found and next steps….…this took 6 weeks ( not knowing anything) the waiting was the worst. 

 Good Luck Wes

Debbie

WesG said:

Normally, my team is incredibly supportive, so this lack of communication feels unsettling. I understand they’re busy, but a simple message like "We’re aware and here for you" "this is the plan" would have made a difference.

They probably have no plan until the biopsy results. If it's SCC it will be back to them and if Lymphoma it will be haematology. The two "plans" for treatment will be entirely different. Fingers crossed for you.

My routine chest CT before treatment turned up two nodules, one sub pleural which had nasty potential, The plan was to re CT three months later. I asked what would happen if they had grown and was told simply that I "would be passed on to the Lung Team.' It did feel like. "Bye bye, off you go" I must admit