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Who out there understands SUV (Standardized Uptake Value)?

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

I met with my ENT/Surgeon today to discuss my 3 month PET-CT Scan and he is concerned with the SUV level on the scan which was 2.7 (the higher the number the more likely that the area of activity is cancer). Anyone out there understand the SUV?

I have three options at this point:
1. Wait and repeat the PET-CT Scan. ENT does not think that I should wait 6 months. Hopefully the insurance company will pay for another one in 3 months.

2. Neck dissection (the only way to know for sure).

3. Do a needle biopsy now and if malignant do neck dissection right away. If benign, wait 3 months to repeat PET-CT Scan. Of course, benign could mean that no cancer was present in that particular spot and it was missed.

WOW! How does one decide? What can you tell me about the neck dissection. It sounded so scary (he said 4 days in the hospital and permanent numbness). Any input would be so appreciated. Pretty confused and scared here. Thanks.

Viv

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Vivi,

Can you consult with your oncologist/radiation doctor about the SUV levels? He or she may have a different recommendation than does the surgeon. It would seem that any surgeon would have a natural inclination to recommend surgery as the most likely option.

3-month PET-CT results can show hot spots that aren't cancer. I always understood an SUV of 3 as being the cut-off point, below which they would simply observe for a while.

Good luck in your quest for information. There are folks here who have specific experience.

Deb

Deb

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

I did call my Oncologist today. Again, he said that he is comfortable waiting but that of course the only way to know for sure is the neck dissection and that the final decision is of course mine. He said that they do not worry with SUV below 2.5 and that mine is so close to that range. Mine is actually 2.7. This is so awful and I have no idea what to do.
Viv

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Wish I could tell you how to decide. At my three month PET, one node showed up at under 2 (I think it was 1.8); docs said it was within the "normal" range, and would very likely not show up on my next scan. We went with the "wait and watch". last month, the activity had increased to over four (insurance initially would not OK a PET so soon after the last one, but when a growing mass showed up on the CT, the PET was approved). I'm having the dissection next week; the most recent PET results made the decision an automatic, for me. I hate having a tumor again; hate the fact that I can feel it, and can feel something is wrong. Can't wait to get the surgery. It did sound scary when the doc gave me the run-down (numbness, issues raising my arm, potential nerve damage, tongue paralysis and/or speech probs, etc.). What I've heard from folks here was not nearly as scary as my doc presented. A lady I communicate with who went through the whole package told me that the neck dissection was nowhere near as bad as chemo/radiation (she said "you'll breeze through this, after you've gone through chemorads"). I've heard there's soreness for most for a few days; it seems the people who develop "real" issues are in a small minority, but a few I've seen do have numb spots.

Good luck, Vivi - we all know it's hard to figure out.

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Hey Pam,

I had that "difficulty lifting arm" effect, after removal of the one 3 cm lymph node from the right side of my neck. Pretty much couldn't lift my right arm much above the horizontal. Six months later, and it's coming back. Yay! Suddenly realized I could freely lift it straight up.

Deb

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I think I'll be able to put up with the limited arm movement thing much better since I believe it'll be temporary. Ummm - don't hold me to that if you see me whining about it later. Glad you've got mobility back.

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

Viv,

I had the partial neck dissection in April of this year. It was by far the easiest part of the cancer treatment.

I have a slight numbness - a feeling akin to having a hand go to sleep - on a very small spot on the underside of my jaw near the left ear. I never notice it unless I think about it - or more often - when I shave there.

The skill of my surgeon following a natural crease in my neck has made scarring virtually invisible. Unless you're actually looking for the scar, it is not noticeable.

It was the right decision for me. It healed very quickly and I have no regrets.

Rush

Vivi C's picture
Vivi C
Posts: 70
Joined: Jul 2010

Thanks for the info Rush! What was the post op period like? Pain? Eating? Did you have the neck dissection after radiation? Why? What did they find? Sorry for all the questions. Thanks a million.

Viv

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

I had the surgery prior to radiation / chemo. They removed 41 lymph nodes on the left side of the neck and two were positive for SCC. It seemed to make more sense to me to remove the cancer first and then use chemo and radiation to "mop up." I had an early stage tumor on the BOT they removed at the same time.

I had my tonsils removed for a biopsy about three weeks before the neck dissection. There was nothing wrong with my tonsils, but they wanted to be sure. The biopsy hurt alot more and caused much more eating difficulty than the BOT surgery and neck dissection.

The neck dissection and throat surgery never really affected my eating. They wouldn't let me swallow for a couple of days after surgery and then did a swallow test. Everything seemed to work OK and I was on my way without any real difficulty.

They gave me some pretty potent pain killers immediately following surgery, but I was using a liquid lortab within about three days on an as needed basis. If I remember, I quit taking any pain medicine after about about a week.

Rush

Hondo's picture
Hondo
Posts: 5648
Joined: Apr 2009

Hi Vivi

Standardized uptake value, SUV, referred to as the dose uptake ratio, is a widely used, simple PET quantifier, calculated as a ratio of tissue radioactivity concentration
Instead of body weight, the injected dose may also be corrected by the lean body mass, or body surface area (BSA) (Kim et al., 1994). Verbraecken et al. (2006) review the different formulas for calculating the BSA.

You can go to this web site and get more info on SUV
http://www.turkupetcentre.fi/index.php?option=com_content&view=article&id=185&Itemid=69&lang=en

Take care and hope you continue to do well
Hondo

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

You really need more information here but "My personal Opinion only" because it's what I did in my situation was go for the neck disection.

Why-- because my reseach showed that appx. 28%of the time recurrence is due to cells lingering in neck lymph nodes and that is too high a risk for me personally. You need to know who is doing the surgery?? Is it your ENT?? Is it a teaching hospital and some student is doing the cutting?? What type of disection is it?? Selective, bi-lateral, modified?? You need to understand the difference. You can watch one on "YOU TUBE" not for the faint of heart. They do carry some risks associated with nerve damage which can affect arm movement. I had a selective disection on the left side and was in and out in twelve hours with no nerve damage. I have a permanrnt hard spot on the side of my face where lymph fluid will forever collect and drain slowly. You will too. You will have minimal scarring and some permanant numbness. You have to weigh all this with the type of disection vs. the 28% chance of cancer in a node?

PET scans are wrong 25% of the time in either direction. google error rates for PET scans and research. The truth is it's too early to tell with you. What are the risks of waiting?? ask your ENT who by the way is a surgeon and surgeons like to operate. may or may not be right for you? You've got time for a second opnion.

Needle biopsy is useless. Don't waste your time. My first needle biopsy came back negative for cancer. I was estactic. MY ENT told me it didn't mean anything and he still needed to do a surgical biopsy which came back positive.

Do a little more research on your own and ask your doctors more questions and in the end you will know what to do.

It will come down to, "If you are comfortable with a wait and see approach" which your ENT is clearly telling you he isn't. I faced the opposite, my ENT wanted to wait and see and I opted against him and went with a neck disection. I emphasize mine was a selective disection making the decision more palatable. It really is your decision and your prudent to seek imput.

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

Hi Viv, I had a biopsy and a neck dissection. My MRI showed necrosis in Lymph nodes in both sides of my neck, but my lymph nodes were normal size. So I had a biopsy and it came back clear. When I had my surgery to remove the cancer the doctor felt it was prudent to not only remove the tumor but remove several lymph nodes(16). Luckily the lymph nodes came back clear. I do have numbness under my chin and my neck does look different but not horrible to look at. I'm with one of the other people, have the neck dissection. You do not want to mess around and wait and see if it gets bigger or spreads. That would be disatrous. My opinion anyway for whatever its worth! Good luck to you and Merry Christmas, Shelly

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