Newly diagnosed with SCC of left neck lymph node, HPV+, primary unknown

Annette,

Your story is very familiar to me. Earlier those cysts were just cysts, now they are very common manifestation of HPV+ SCC. Small primaries (mine was found after all) large lumps. Did you have Pet? if not that would be the next step chasing your primary. Do not worry about the spilling as the cyst was connected to your body as well and radio will take care of it It is hard to give you any hints before you know how you would be treated But radio therapy is very common so you can check how other people were coping with it Sometimes it can be tough but it is doable and it works!

Hi Annette and welcome to our little community. I am tagging one of our members who has had a very similar experience PFJTHS

He will be able to tell you all about the side effects of lymph node resection and these do include the numbness and pain around your shoulder arm and jaw. It's because nerves are damaged during surgery, but it does get better. Don't worry about the "cyst" breaking. Cancer doesn't seed itself that way and for cells to establish themselves elsewhere is a very complicated procedure on a cellular level. Like Riot says....the radiotherapy will take care of it anyway.

Are you getting a PET/CT to further look for where the primary might be? Here in the UK it's common to take a few random biopsies in the favoured places for the original cancer.....being tonsils and the lingual tonsils at the back of the tongue.That might well find it

As for waiting...we all hate that and the only thing of any help is to try to keep busy and stay positive. HPV+ OPSCC is eminently curable so keep your mind on that. If you have trouble sleeping then ask for some mild sleeping tablets. You need your sleep to stay healthy.

The radiotherapy itself is painless but side effects start at about the third week. If you are offered a feeding tube take it. I had one and it was lifeline to keep me medicated and fed. Pain is significant but manageable. Take it a day at a time.

Have a look at my blog. It has a few tips you might find useful

There is a USA site called "Inspire" you might also find a help more locally.

Good luck and hang around as you take your journey and we will all help as much as we can.

Hi Anette it is Peter - Dani tagged me.

I am similar to you, but on the right hand side.  Primary unknown is not overly common, but not unusual.  I think it is often because these tumours are very small in the early stages.  They even found my primary after looking for it for over a year -  then lost it again when they went to remove it.  You could not make it up what my body is doing to me!

As Dani says the nerves for a large part of the upper body run in the area where they do the dissections.  Nearly 18 months on my ear is still numb.  Fortunately I did not have any facial nerve damage, although that is possible.  My shoulder was quite painful, but time and good physio has mainly sorted that.  It certainly now does not affect my quality of life now.  The reason is that the accessory nerve again runs through the dissection site and controls the shoulder.

They checked my cancerous lymph node for bursting and seepage of the cancer cells.  It was intact.  But, that was when they were scraping the bottom of the barrel to explain my first unknown and really put a safety net in place for me.  It is not normally a worry.

I can't help with the next stages of your journey as I've not gone down that route - just yet.  I am waiting for good evidence that my primary is there and there is nothing to indicate that it is at the moment.

Good luck, and if you want a more detailed response to any surgical issues ask or message me though the site.

Hi Annette,

If you find the post headed 'about to get on the Roller coaster' that describes what has been happening to me recently. Very similar to you. I had swollen lump in neck but knew from biopsy that it was HPV+ SCC.  Various scans showed no primary.  Different to Peter, my ENT consultant decided not to go for biopsies but to go for TORS removal of both tonsils and base of tongue.  My recovery from this has been really good.  On examination of the tissue, they found my primary in the base of the tongue and it was removed with clear margins.  I was so happy to hear this.  I am now undergoing chemoradiation to get rid of my neck lumps as they were not suitable for surgery.

I'm not sure what Peter would say if he had been given this option originally. I know his biopsies have been really painful and numerous.  It just gives you two ways of looking for an unknown primary.  I totally understand not wanting to have radiation not targeted on a particular spot but surgery vs biopsies is another matter!

I hope this might help.  Sorry if the writing is a bit wobbly, it was quite a big dose of chemo!!

Hi Annette65, we talked on the Secondary Lymph Nodes Cancer group so I’m glad to see that you followed my suggestion and joined the H&N group as you’ll find more activity on here which might help. I see that a lot of the other members have responded to you so I hope that this will answer a lot of the questions that you may have in the weeks ahead.

Best Wishes

Carol x

Hi Annette 65. Just like  to welcome you to our community can’t really  add to what the others have said. But the h p v 16 + is a good indicator if there is such a thing in a cancer diagnosis. It means the tumour responds well to treatment . I had 35 radiotherapy sessions and 2 chemo I had several lymph nodes affected and primary in the crypt of my right tonsil. Treatment s hard ivwas 61 if u can do ur anyone can. 
Keep in touch 

Hazel x

Thank you, everyone, for your information and support - I really appreciate each of you for taking the time to respond. My ENT surgeon ordered a PET scan but so far it hasn't been scheduled. I will need to follow up on that Monday, since it's already late in the afternoon today. I've read your blogs and stories and it's all a bit overwhelming. I'm very encouraged by the fact that many of you are in my age group (I'm 65) and came through ok, a little battered, but very much alive. I'm going to try to just take it one day at a time and not look too far into the future. My biggest question is whether a feeding tube is really needed. It sounds horrible, and I could use a little weight loss, anyway, so I'm leaning towards not having it. How many days could I reasonably expect to not be able to tolerate anything by mouth, even liquids such as protein drinks? I know everyone is different, but I'm going to start with the assumption of 30-35 radiation treatments and 2-3 of chemo - with adjustments made depending on PET scan results. Thank you in advance for your thoughts on feeding tube vrs toughing it out. 

Hi Annette

I had a nasogastric tube in for 8 weeks but by the time it came out I had been taking liquid food orally for a week. It saved my life. I experienced considerable pain and was on a lot of morphine. Trying to eat was impossible and I started to get frightened of putting anything in my mouth.

All in all I reckon that apart from tiny sips of water I couldn't swallow anything for a month.

In the latter weeks the tube enabled me to have enough nutrition to recover and not worry about calories while being able to play with stuff I could eat.

Yes we are all different and some folk do "tough it out" but the more "food" you have...and you need 2.5K calories a day to survive the treatment well......the faster you heal.

My dieticians were dragons. My oncologist told me when I said I could do with losing a few pounds that cancer wasn't a slimming diet and if I lost more than 10% of my body weight I would be hospitalised.

Feeding tubes are not uncomfortable and are like I said, life savers.

Hi Annette the n g tube was a life saver fir me it was literally a life saver.  Some manage to eat I did uo the eeek 4 then hit the wall I had it in until week 3 of recovery as Dani says you need nutrition to repair the damage done and constant hydration when you can’t eat it’s dam well impossible. Talk it over with your oncologist. 
good luck 

I agree with everything Dani says my dietician s we’re also dragons I lost my weight at the end of treatment not during ut 

keep on touch Hazel 

Unknown said:

I've read your blogs and stories and it's all a bit overwhelming.

Annette. 
MarkEL has a good blog in his profile. It’s really worth reading 

community.macmillan.org.uk/.../markel