Recurrence already?!

mrsbralylovesmrbraly

Ok, our cancer story.  Hubby diagnosed with Stage 4 base of tongue and one lymph node.  We were not a candidate for surgery due to an unfortunate accident which landed him with a broken leg and several blood clots.  We completed 35 rads and 3 Cisplatin on July 29, 2019.  Had a CT scan in September which cleared the lymph node.  Had scope by ENT that cleared the base of tongue except for some residual inflammation from treatment.  We had a PET scan this past Monday and will get the results next Monday.  Hubby tells me this morning, there is a lump on the side of his tongue that has been irritating him the past several days.  He didn't want to worry me.  Well, I'm worried.  I know we don't know anything without a biopsy, I'm a 3 year breast cancer survivor so I'm very familiar with how the cancer world operates. We also knew going into this that recurrence was more likely, than unlikely.   I'm just shocked that something could show up that quickly?  Basically I'm looking for HOPE.  Thank you. 

Sabrina23

There is always hope

There is always hope it is not cancer and you have my prayers and thoughts for a NED!  Did he get the spot biopsied yet? Praying results from Pet are NED!  Please never give up hope. Miracles can happen and God Bless!

Logan51

3 months?

Worry not. First of all, this would not be a recoccurrence if it's only 3 months- it would be the Rad Dr.'s fault for missing it, which is unlikely. 

Did your Hubby just notice the lump? I'm 10-1/2 years out, NPC, and I had white sores on the sides of my tongue that alerted me to loss of gum tissue exposing lower part of teeth on each side. White spots on tongue are still there. What I'm saying- a lot happens to the mouth from the Rads, and this just might be a product of it. Scar tissue buildup? Very well could be possibilities other than it being C.

Typically: the only reason for the 3-month PET/CT is to establish a baseline for the Radiologist Dr.s to compare future tests to. My ENT told me something showed on mine, but he wasn't worried about it- 10-1/2 years ago. And, there have been cases of false-positives where the Dr.s have actually done surgery- only to find out nothing came back positive for C!

If it is C, and I hope and Pray it isn't- you need to ask the Dr. how in the heck this could be. Only rationale I can find is the C was deeper/more extensive than the Dr. had diagnosed, so they didn't get it all. BUT- to show with a lump in just 3 months? I don't think so. 

You want hope? Well, I just don't see how it could be C. Odds are in your favor it's a Rad side-effect.

ratface

You have more than Hope

DaveK is right on. Radiation does lots of things to the inside of your mouth. I had 39 rads and it changed my oral tissue to this day.  Your husband is just recoving from all that trauma. My mouth is completely different with my internal oral walls  sunken  in a bit, and thicker, to the point where it's easy to bite myself. I also get blood blisters and water blisters that appear out of nowhere. This was routine for several years after radiation. They usally go away after several days. Has anyone been poking in his mouth with anything? I can't go to the dentist without coming home with some bruise that a normal mouth would never sustain. Can you see the bump? Is it under  or above tissue and what color is it? It would appear to be an easy accessible location should it need to be removed surgically which alone is already hopefull.

joannaw81

hello mrsbralylovesmrbraly

First, not such positive opinion: my mom had tonsil cancer with 1 lymph node involved, had suregery, radiation which ended in Februarty of 2011 then in april same year only 2 months after finishing rads a spot showed up on a side of her tongue and later in September biopsy confirmed as a recurrence so yes, in my opinion there is a possibility that it could be a recurrence in your husband's case however the good news is that few months later on multiple occasions there were similar spots that were showing up on her tongue and all ended up being nothing. Biopsy is the only way to confirm. I am praying that is it NOT a recurrance in your case. Will keep you in my prayers. Keep us posted.

mrsbralylovesmrbraly

ratface said:

You have more than Hope

DaveK is right on. Radiation does lots of things to the inside of your mouth. I had 39 rads and it changed my oral tissue to this day.  Your husband is just recoving from all that trauma. My mouth is completely different with my internal oral walls  sunken  in a bit, and thicker, to the point where it's easy to bite myself. I also get blood blisters and water blisters that appear out of nowhere. This was routine for several years after radiation. They usally go away after several days. Has anyone been poking in his mouth with anything? I can't go to the dentist without coming home with some bruise that a normal mouth would never sustain. Can you see the bump? Is it under  or above tissue and what color is it? It would appear to be an easy accessible location should it need to be removed surgically which alone is already hopefull.

It has no color and is under

It has no color and is under the tissue, it's a palable lump that wasn't there prior to treatment or after.  It's on the side of his tongue, same side as the original tumor. 

Thank you for more than hope. 

 

mrsbralylovesmrbraly

Thank you guys for your

Thank you guys for your responses.  I will keep in touch, as I know we have a life long journey ahead of us.