Husband got metastatic SCC in lymph node, P16-

Rose01924 said:

It seems like a -P16/-HPV is much worse and it seems to be taking ages to get the information from all the scans about the primary and I just want him to start treatment if he can.

Hi. Both HPV + and - oropharyngeal cancers respond well to CRT so please try not to stress too much. Google is not our friend at this crucial early phase. 
I was nearly four months from finding my cancer to start of treatment and I am fast approaching seven years. 
You’re right in that HPV driven cancer has a better long term prognosis but it’s possible to be P16 negative and still HPV positive. The P16 test which is a stain is a surrigate marker only and isn’t infallible. You could always ask the pathologist to check for HPV DNA which is more accurate. 

Hi please try to keep off Dr Google you can end up down rabbit holes that are hard to escape from

. Time-wise I found my lump  in Spain February 2018 we were in extended cycling holiday I too was and are once again fit. I cycled 1100 km with Larry the lump  thought i had pulled a muscle. It was only  at the instance of a friend whose hubby had recently died that made me go to go in our return may 2018. GP straight away put me in the HNC cancer pathway. Treatment started 14 July and here u am 7 years later living s good life. They won’t starts treatment until the scans are done and they’ve looked for the primary a few weeks won’t make a difference look at my timeline and Danis  he’s in the system please try to trust it  nit easy ti do but if the promarynfi7nd they have that to target m often it’s not then they target both sides  I had 75% radiotherapy on right side and 25% on left to mop up any stray cellls  

now you have found us on here stick with us no questions every too silly to ask. But steer away from dr Google. 

hygs Hazel. 

Thank you. I will try. 
He’s exhausted now so I am worried it’s the cancer but I suppose it’s more the emotional drain of finding out and not sleeping well rather than he’s suddenly getting symptoms. 
He is also blaming himself for this and he he is a completely average a few drinks a week drinker and a non smoker so am trying to reassure him it is not in any way his fault 

Hi try to keep in forefront of your mind head and neck cancers respond extremely well to treatment.

There’s lots if us in here to testify to that. I remember once I got my diagnosis I thought ok I’m doomed it was when i met my oncologist ( never thought I would say those words ) that he was looking to cure me I thought  ok time to get a grip. I can  do this. It’s only natural he will be worrying inwardly I cried at 0300 many a morn)ng sat on kitchen floor my hubby bless him was fast asleep. 
Tell him not to blame himself I didn't drink or smoke  20 years or so since I last had either but hey ho  I got tonsil cancer. 
Have you had his HPV status I didn’t get mine untill  week before treatment started everyine thought it would  be as that’s the fastest HNC in numbers at the minute. But HPV negative cancers also get cured so don’t fret. 
Read mine or Danis blog or look at Peters experience  am sure he will pop on at some point. 

hugs Hazel

Yeah it’s HPV negative unfortunately but like you say that’s not the end of the world just makes it harder

i see you were treated at Leeds, we will be there too x

Hi Rose. Yes I was treated at Leeds cancer centre you’re in good hands there. I’m still in contact with a few people there.

The maggies centre is well worth a call into. It was being built whilst i was in treatment there. 
my hospital was Pinderfields Wakefield for my reviews but my oncologist kept me for annual reviews. 

The staff at Bexley are all kind and considerate when he has his mask made ask for eyeholes To be  cut out that does make a huge difference  if you read my blog you can see how much they cut out for me  

hpv negative tumours also respond well remember that  

hugs 

Hazel x

Good evening, Rose, cancer can affect anyone at any time in our lives, i had never been in a hospital and rarely went to see a doctor, and never thought i would get cancer. Yes, i did smoke and liked to have a drink. Still, back in 2008 i had never heard of mouth cancer, etc so it was all new to me when i went to see my dentist about an "ulcer" that would not heal up. So, after a round of antibiotics and mouthwash, nothing changed, so he referred me to a Maxillofacial Consultant. As soon as I left my dentist, i just prepared myself that it was cancer, and whatever was needed, i would do it, as i just wanted the cancer gone. So when i saw my consultant, he said to me straight away that he was 99.9% it was cancer (floor of the mouth) and was very aggressive, so i had blood test, x-rays, and a biopsy done there and then, so from never being in a hospital there i was having all this done to me. When i got home, i explained to my family what had happened and what lay ahead, so we all agreed that we would not let it ruin our lives and accept the diagnoses. Once all the test results and scans were done, i went in with my wife to see the consultant, who explained everything, and he was very confident he and his team would cure it. Thankfully, they did, but unfortunately, it took three attempts to get there due to it coming back in 2009 and 2010. Thankfully, i never used Google as i don't like knowing what lies ahead i cope better by taking things a day at a time, plus Google can be so misleading and frightening, so i just relied on my consultant's experience and reassurances. Wishing you and your husband all the best with everything, together you can do it. Take care. 

                                                                         Chris x

Hi Rose. I am so sorry that you and your husband have found yourself in this predicament. However treatment is really effective whether it be HPV positive or negative. Mine was negative and I had the same treatment as everyone else and had a good result. I was fit and healthy, never drank or smoked. It was just one of those things so your husband must not blame himself. You are right you can become really exhausted from all the emotion involved in a diagnosis but things do become a bit easier once treatment starts. 

You and your husband will get great support and advice from those on this forum who have experienced something similar. 

Sending my best wishes

Lyn

Good morning, I am so sorry to hear about your husbands diagnosis. As a fellow wife I feel for you both. When we got our diagnosis it felt like our world came crushing down. You never think it will happen to you. At first all different kind of emotions take over. Not knowing what comes next. As your husband, we quickly got all sort of scans, MRI, biobsy, mask fitting etc. Once we got a treatment plans and all the dates, 30rds RT and 2 CT,Cisplatin, it got a little easier,at least we knew what was about to happen. We also got told by our consultant that it would be a long bumpy road through treatment and afterwards. So prepare yourself for side effects. I am not gonna lie,it was heart breaking at times to see my husband having to go through all that. And I found myself crying to sleep at times. But I needed to be strong for all of us.We told ourself, we may have cancer,but it won't have us. And knowing that this has a high curable rate,it got us through it.So stay strong and positive. My husband is now 11+ mths post treatment. And doing fine. A couple of enoying side effects are still there, but I don't want to think about the alternative. All the best for you all of us Hugs Mel x

Hi Rose.

I was 38 when diagnosed last year. Like your husband, I considered myself very fit and was regularly exercising, walking my dog and generally felt great and then this lump came out of nowhere and life changed. 

Although I was HPV+ so different from your husband, I had two surgeries and RT x 30 as treatment which finished almost 1 year ago. The treatment is tough but doable. 

I just wanted to get in touch to say that I’m now back at the gym 3 times a week and feel as fit as I did before. Your husband will hopefully be able to take stock from that. A wee bit of a wonky throat that I laugh at now and I’m careful not to drink spirits so it’s a new way of life but there’s hope for those about to start treatment. 

google doesn’t help, here does. Ask away as there’s a lot of very helpful people here who helped me through my journey.