Occult cancer

Hi, beannnie20, This didn't happen to me , as they found my primary in my tonsil, however there are people on here who have had the same, where no primary can be found, it is often the case that your own body has got rid of the primary, and you then have the secondary to deal with.

I'm sure someone will be along, who have been in the same position as you, who can offer you more info on this subject.

All the very best.

Regards Ray.

Here you are. 
Search Peter’s posts

community.macmillan.org.uk/.../pfjths

Hi.  I think I am probably similar to yourself.  Went to the GP with a lump in my neck.  In short order it was looked at and the lymph node removed.  Despite a needle biopsy being clear the node was cancerous.

My scans showed right tonsil and base of tongue as PET scan "hot spots".  However, despite more biopsies, removal of my tonsils and a further neck dissection to remove more lymph nodes, they have never found the primary.  The last surgery was in late January and I am now on regular check ups with the hospital (2 monthly ATM) to see if it can be found/comes back.

I was given a number of possibly scenarios ranging from "it has burnt itself out" to these cancers are normally quite small (2-3mm in diameter) and it may not have been picked up when the examined the tissue removed as they don't typically slice it to that extent.  They did go back to do a more detailed examination on the original lymph node as part of deciding if to do radiotherapy.  All evidence pointed to radiotherapy being worse than keeping what is called a "Watchful Wait" on my throat.

I am sure that I've only just brought time and at some stage the cancer will return/become obvious and need dealing with.

It is difficult dealing with being in such a position - I like certainty.  But, you get on with life and make sure you keep up with you checks and don't hesitate to note down and retell any concerns you have.

I am assuming you are having a neck dissection??  Make sure you talk to your surgeon about side effects.  My first one was OK, but the second, more extensive, one has left me with some lasting damage to the muscles controlling the shoulder on the dissection side.  Not a disaster, and something you learn to live with, but it is better to be prepared than find it as a surprise outcome.  There are a lot of nerves running through your neck and despite every care some get disturbed with varying degrees of issues caused.

BTW I found recovery from both neck dissections relatively pain free and quick.  I was on a plane to the USA 13 days after my first one; recovery was that good.

Feel free to ask further questions and good luck for Tuesday :-)

Hi

I was in the same position. Found a lump in my neck June 2019, which after numerous tests etc, turned out to be a secondary cancer with no primary to be found even after surgery in August (they suspect tonsil area). I was told that sometimes your body deals with the primary and I would like to think that is true. I did think that not finding the primary was an incredibly scary prospect but, my PET/CT scan in Feb 2020 was all clear and a friend said his consultant (Marsden Chelsea) said a huge percentage of beating cancer was to have a positive attitude so, although not always easy, that is how I try and think these days. You are correct in that it is all so surreal. My neck lump almost appeared overnight but, all the meds were fantastic in getting me seen in a big hurry that I am feeling positive.

All the best to you.

Tricia

Hi Ray

Thank you for taking the time to reply. Would be amazing if the primary had gone haha. Hope your treatment is going well or completed. Thanks J 

Hi Peter

Thank you replying you have made me feel a bit better. I am secretly hoping for the same outcome !  
I was very silly really and could honestly kick myself for not going to the Drs earlier. I had the swelling back in 2017 and when I eventually went to the Drs in the August I had a scan which said it was normal just swollen. I had recently homed 3 kittens only to discover I had a cat allergy and put it down to that. The lump never went away and then about 10 months ago I noticed it was getting bigger. Good old Dr Google made me feel it was normal as it said gland scan swell and stay up for years for no reason. I eventually went the Drs again in early March and even she thought it was a cyst and didn’t put it through as an emergency. It was only because my appointment was further delayed due to Covid-19 that she then decided to fast track it. I knew something was wrong at the scan when the radiologist asked if she could get the consultant to do a biopsy. He then straight away sent me for a CT chest scan and MRI of my neck. This has now shown its MCC. It would be amazing to think the primary had miraculously healed but the consultant said it could either be from tonsils ( I have none ) tongue or lungs although they have found no evidence as yet. Operation for neck dissection is Tuesday and then 6 weeks after a course of radiation which reading about am dreading ! The consultant said prognosis is 80% if it’s HPV caused anxiety 50% if not ! Have you been told similar ?  
Feel better knowing you healed well from the neck dissection it sounds so daunting. I was warned I could have damage to shoulder or my lip may drop one side. Still all feels like a bad dream but I’ve got to say whilst am not a media fan groups like this will most definitely be a massive comfort and help. Thanks J

Hi Trisha

Thank  you for replying. Did you have a neck dissection or any radiotherapy ? You are so right about attitude. Ian feeling a bit better as the days go by and I am getting over the shock.  Thanks J

Hi

At least your PET/CT scan is clear which is reassuring

Radiotherapy is a demanding treatment and certainly is no walk in the park but it is doable. I was 67 when diagnosed and at 16 months post RT I am well and thriving. There are certainly long term effects you have to contend with, the most significant being a dry mouth. 
There are plenty of us here in a similar position and we are all well. 
Filling in all the rigours of treatment is difficult as we all react differently and your oncologist should go through these with you. 
Please don’t hesitate to come back with questions as your problems surface. 
All of us are only a private message away if there  is something you would rather discuss quietly. 

if you go to your profile you can send a friend request to allow private messaging and while you’re there it would be useful to fill in your bio so that you don’t have to repeat everything about yourself any time you start a query. 

Good luck. 
Most OPSCC is now due to HPV which is eminently curable. 

Yes I did have a neck dissection, 30 sessions of radiotherapy and 2 Carboplatin (I have slight tinnitus) chemotherapy sessions week 1 and week 5. I had no droop to lip, no feeding tube, no issues with radiotherapy (quite calming in fact) and no issues with the chemo. The radiotherapy does cause issues with taste/saliva and the surgery with tightness in my neck, a slightly numb ear and shoulder however, I am 6 months post treatment and my food situation has got better as has the mobility in my neck. I feel I have more room for improvement too. It was a total shock to me too and I was told I had no real choice but to go ahead with the treatment recommended ( that said, different hospitals have different thoughts-I am in Surrey). I feel for you being in this situation but you can get through it.

All the very best and am here if you have further questions.

Tricia

J,

I've certainly been told that HPV based cancer responds much better than other cancer types. 

I do think I was lucky to not be subjected to radiotherapy at this stage.  I know the MDT at Southampton had a long debate which led to my second neck dissection.  That was a very extensive look for the cancer - after 3 hours of digging and 4 consultants searching; nothing found and, so on balance, the MDT decided not to proceed to radiotherapy as it would have been bilateral and non targeted. 

I was warned of the same side effects as you.  My face has not be affected.  I've also lost "skin sensation" in my neck and right shoulder/front of chest.  I think that is almost a given in all cases as they have to cut some of those nerves when going in.  It is a strange, but not uncomfortable sensation.

I've a shortish scar at the base of my neck in a fold in the skin.  The surgeons are very skilled and take great care to preserve what they can.

Thus, after all that, I am waiting for the primary to make itself known.  If  it has "burnt out" I was told there is a 60+% chance of reoccurrence.  That said your follow-up checks are designed to catch it at the earliest possible sign so it can be dealt with.

We're here for each other :-)