Had my last follow up appt 4.5 years out last week. Doc didn't like the way the very corner of the flap looked. Took biopsy and came back as cancer. PET scan scheduled this week. He's thinking surgery again. Anyone ever heard of cancer developing on the flap itself? Doc says it can happen, but rare. I can't believe it as i'm HPV -, Non smoker, moderate drinker.

I didn't have radiation before as he wanted to keep that option in case we needed it down the road. He's considering it this time around. I'm a very positive person and am ready to attack this again now that i'm getting used to the fact that its really happening. Scared though. Very scared.

Im so very sorry you have to go thru this again!!! Its extremely rare but yes there have been a couple members who have had cancer come back in their flap. Wishing you all the very best with everything you are facing.

Hang in there!

dtm74,

I’ve also heard cancer can return, and when it does it can be to the surgical site or incision. I’ve had numerous recurrences myself, in areas that were previoiusly treated, that were deemed recurrences since they occurred less than a year, and had the same pathology. At this point, they may consider this a secondary cancer, not sure though, due to the time distance from the first cancer or it can you may have a different pathology from the first cancer, which may mean nothing to us or change treatments, but it may be something you hear or see on a report, so you may want to review the pathology report from the biopsy, I always get a copy anyway, or ask the dr, the type of cancer it is like squamous cell carcinoma probably like the first, tumor grade, etc.

Good luck with the PET scan.

Thank you Christine! I will

Paul,

Thank you for the well wishes and for the information. Good point to get a copy of this pathology and compare to last. I'm learning as i go so appreciate you sharing your experience with me.

I'm so sorry to hear you're going through this again. Did you continue drinking moderately after the first surgery up until now? Asking since it can be a risk factor for HPV- cancers.

Good luck with the scan!

Yes, i do still drink very moderately. I might have 2 glasses of wine / week on Fri or Sat when out to dinner. I had specific discussions with my doc re: this subject and he said that the very small amount that i may drink should not be a factor. Some of the stuff i read on this site makes me think otherwise. It is a non factor in my life so going forward i will not be drinking at all. That way I 100% rule out that as a factor.

Truth is we have no idea where the limit goes (if there even is one as we're all individual cases) and wine isn't considered as detrimental as hard liquor and you certainly didn't drink a lot if it was only 2 a week. But I'm glad to hear your resolution! As someone else wrote here once, why tilt any odds out of your favour. I also had dysplasia for around 8 years before it turned into cancer and I still have no idea what caused it.

So i have the results of everything, have met with my doc, and have gotten a 2nd opinion at Dana Farber. Both recommended treatment plans were the same. The radiologist report for my PET says no cancer. Not even in the tongue. Both sets of docs say that means the tumor is too small to show. The PET report from the radiologist also said nodes are fine, but both radiation oncologists see a few nodes that concern them. The plan is to remove the area where the biopsy was taken to get clear margins. Won't be a flap surgery and won't need a trach thankfully. Would also do a left and right neck dissection to remove the nodes that concern them. Then 6 weeks of radiation. I have an MRI scheduled Mon to try to get a better look at the nodes that bother them. Chemo would depend on whether the nodes they removed were encapsulated or not (think that's the right terminology). I need to decide if i'm going to continue with my current doctor (non CCC) or switch to Dana at this point. I think i'm 95% sure i'm going to switch as much of what i've read on here says CCC is the way to go.

I considered this to be pretty good news overall. I've spent a lot of time on this site reading thru the posts about radiation treatment. Realizing its different for every person, it sounds like overall its a tough road. However, i'm confident its the right decision at this point and i'm very determined to get thru it. I've read a lot of Christine's posts on intake and the importance of 2500 cal per day min + 64 oz water min. Few questions:

1) How have people accomplished that goal who have had severe swallowing issues? Does it generally include an ensure type product or can anyone provide some examples of how they succeeded in meeting that goal
2) Does anyone have any other recommendations for "getting thru it" - anything that they felt was key to their success

Thanks for all the support. This site and the people on it are amazing and a tremendous comfort during a scary time.

At our hospital, all patients who undergo radiation get a feeding tube. Then one can choose to use it or not depending on the need. You may want to talk to your doctor about the strength of the radiation and if it would likely impact your swallowing. I find that if patients ask, doctors will tell them, otherwise some doctors just omit telling their patients these things. Good luck!

I had 30 days of radiation for 60 Gy and followed Christine’s advice - I actually gained weight (20 lbs, which I have now lost) and I think that made all the difference in my recovery, due to nutrition.

I ate regular soft foods until the last week of radiation and then switched to homemade protein shakes. I did not use ensure or medical shakes.

I was on high doses of gabapentin to control pain. The bigger challenge to me was everything - including water - tasted awful and salty. I had a dry erase board with a list of water, calorie, and nutrient targets and forced myself to hit the goal daily. By the end of treatment this meant a lot of ice cream for calories.

Up your protein intake (shakes are fine) as the body needs it to repair damage from radiation.

Best of luck!
Stef

DMT74,

So sorry to hear you joined the recurrence club. I also had a recurrence a few months before my 5 year mark.Details of my OC journey are in my signature. One thing to verify with your surgical team is to confirm that they are doing “frozen sections” during the surgery - this is a biopsy done during the surgery to help ensure they get clean margins. Most larger hospitals do it, but many of the smaller ones do not. I learned they hard way how important this is.

I did not have a feeding tube during RT nor did my doctors even mention it. My cancer was on the lateral side of my tongue and the radiation was concentrated mainly on the right side (tongue, jaw, neck) sparing most of my throat. After the first few weeks of treatment I was mainly on a soft food and liquid diet (smoothies) - invest in a good blender (Vitamix). I could not chew and could not tolerate hot or spicy food, but once the food got past my mouth, I was able to swallow it. If met many OC patients over the years, and those that had their whole or most of their throat radiated had the most trouble swallowing and needed a feeding tube.

Good luck! If you have any questions, let me know.

Good luck, dtm74!

To help answer two of your questions, I tried to maintain my swallowing, but usually by halfway through my treatment(s), I would need to rely on my peg tube, which I had for several years anyway, so it wasn’t a big thing. Even with that, it was still difficult for me to reach my nutritional goals, and mostly depended on areas radiated, and type of chemo I was having, sine were easy, like smaller radiated areas in my neck, and lighter chemo, while larger radiated areas, and stronger chemo’s and targeted therapy, were more difficult, for me,,with prior treatments.

Everyone can be different! Whatever you think would help you through treatments, use, as long as approved by your doctors. I found hydration to be important, maintaining swallowing as long as possible, and maintaining mouth exercising, even if relying on a peg tube, and rest! At Hope Lodge it was good being around different cancer patients, and activities, that you could tolerate. I think I did more with a group, than when I stayed alone at home!

Good luck!