I have a biopsy scheduled for March 1 on my tongue and tonsil area. I feel optimistic that it will be negative but I am mentally prepared for either result.

I am curious to hear what others experienced when they were in the unfortunate position of learning that the chemo and radiation Tx did not eliminate the cancer from the primary site. What kind of symptoms did you experience?

In my case, I finished treatment on October 7 and had my follow up PET and CT scans in mid-January. The clinical exams from two MOs and the RO were encouraging. Everyone thinks from the clinical exam that I look OK but the PET and CT show that there is still something there. The PET says there was a significant reduction in the affected area, but there �continues to be asymmetric FDG uptake in the right throat having a maximum SUV of 4.9 (prior 13.8)�

I will know soon enough, but I wanted to follow up on something the RO said to me. He remarked that until only a few years ago there were no PET and CTs and that some countries still do not rely on them as much as we do in the US. He said a Canadian colleague commented to him recently about the importance of the clinical exam. He said these cancers, particularly with HPV positive, respond well to Tx. There is a high success rate. He said that in the case where there is a recurrence (or in this case the cancer may have never got eliminated), �you usually know it when you see it.� I asked him what you see and he said that generally the patient �looks crappy and feels crappy,� and he said �That is not you.� This is at a top 30 CCC in the US and of course he was not saying that as a medical opinion, but just to help me lift my mind out of the medical reports and look at the bigger picture in a common sense way while awaiting the biopsy.

So, I ask my friends here. In cases where the Tx did not eliminate the cancer from the primary site, did you seem to know it in your heart of hearts? Was there lingering pain that just did not get better? Was everything not right � appetite, color, energy level, etc.? Or did you think you were doing great and it just came out of nowhere?

Ive had 2 recurrences. I was diagnosed June 2007, then again April 2008, and the third time June 2009. The first recurrence I had an awful feeling. I just knew what looked like a cancer sore almost exactly where my original tumor was that it would turn out to be cancerous. It was a hunch. I did not feel sick at all. The second recurrence I had never felt better. I went on a 25 mile bike ride with my son and then was told I had Stage IV OC. I was told to get my affairs in order.

A recurrence is just like any other time a person gets cancer. They same symptoms would be for the first diagnosis or a recurrence. You have the HPV+ on your side. HPV+ patients usually respond better the radiation and have better odds against it coming back. With it being so quick, it seems to me (of course Im not a doctor) like the radiation did not completely kill the cancer. Im sure you are worried and when facing a possible recurrence the mind will automatically go to "what if". Do your very best to stay busy to keep your mind off the possibility of being sick again.

When I first was told I may be having another recurrence in 2009, I decided right then and there I was not about to waste any time worrying. I pushed myself to stay busy and to go out and do all kinds of activities with my children. I realized how much time was wasted by worrying what the test results would be. Worrying will never change a test result so I went out and enjoyed myself. Its not easy to make yourself so busy you cant worry but I got pretty good at it.

If and that is IF this would be a recurrence for you then please dont panic. You are already ahead of the game by knowing the medical jargon. When will you get the results? If it is a recurrence please get a second opinion at another cancer center.

Best wishes!

Thanks Christine,

It makes sense that a recurrence a few years out would come out of the blue, but I am just thinking I would know it or feel it somehow if the original cancer was still there. There definitely is something there - whether it is necrotic tissue or live "neoplasm" will only be determined by the biopsy. The fact that the area has felt better the last few months instead of worse is comforting. You are right that the main thing is that we are on top of it and that there is a plan B if it is positive. I have already had a second opinion from one of the leading head & neck surgeons in town (formerly head of the CCC where I am being treated) and we will consult both every step of the way.

Dan

Hi there... Christine has been there so she's best able to tell you. From what you said though your PET, seems to have decreased in uptake since the month three scan. You are six months out or almost but it could still be just an area that is slow to heal. Hopefully it's nothing. But if it is you are being diligent -that's all you can do. Good luck, and hoping greatly that it's nothing!

As someone who considers myself a realist, sometimes brutally so, I've had times where I knew in my heart of hearts I had a recurrence, I felt that I "literally" could feel the cancer growing again after a hot PET scan. The PET turned out to be a false positive, result of the area still healing and inflammation.

This last fall, 3.5 years out of treatment I had two lymph nodes that swelled dramatically, again I "knew" it'd come back and I had a fight ahead of me. My ENT told me to wait a two weeks before he would do an FNA just to see if they went down, he was also concerned that the FNA would just be inflammation and comeback inconclusive. Two weeks later my nodes had reduced however still swollen, not cancerous.

Our emotions will lie to us, our minds play tricks, so I'll leave the diagnosis in the hands of a biopsy and pathology report every time.


Keep your chin up Brotha!

Eric

Dan

Oh no, right before your daughter's rescheduled wedding!
I'm not going to tell you not to worry because I'd be a hypocrite since I worried about every Petscan & MRI, and still do. As far as any foreshadowing of the recurrence, in my case within a year of finishing radiation & chemo, my wife noticed that I was having more and more difficulty eating certain foods plus starting to drool a little bit. My ENT could feel a lump with her finger so clinical exams do work.
The odds are certainly with you that this is a false alarm since Petscans after base of tongue cancer have an even higher rate of false positives than their 47% error rate for all oral cancer. At 90 days, SUV uptake is high for recovering tissues with no cancer. Keep us posted and we will keep our fingers crossed for you.
Charm

Eric I just wanted to commend you on the above post. Those are the kinds of words that makes this place so valuable for getting people through. Thank you brother.

Thanks for remembering my background, Charm. When I first posted last August I was starting Tx on 8/22 and I had two weddings scheduled. We went ahead with my son's on Sept. 10 and that was fine because I was only 3 weeks into radiation and just before my second chemo. But my daughter's was scheduled for Oct. 15 in Minnesota and that was going to be dicey. My wonderful daughter is a former Captain in the USMC (as is my future son-in-law) and always knows the right thing to do. As difficult as it was for them to change the date, they moved it all to March 24 when I definitely (hah!) would be back in good shape.

Well, I actually am in good shape and the biopsy on the 1st will not interfere at all. I will be a little thinner (25 pounds) in these photos as compared to my son's but I will be able to participate fully. I'll be able to taste the food better than I could back in September! We will know the biopsy results by then. If it is negative we will have one more thing to celebrate, and if it is positive we will push that out of our minds for the weekend and attend to it when we return.

Dan

Hank,

you are most welcome my friend. One thing you'll find on these forums is a whole lot of heart...it's who we are.


Eric

Some additional info for those who had surgery to remove tumor and nodes. My surgeon mentioned any reoccurrence in the throat would be on the surface, and in left tonsil area, and anything in the left neck would start as a lump in the general area of original problem. Obviously by problems were on left side. He was pretty confident those are the watch areas, and the first 12 months is the critical period. After the 12 months likelihood is much, much lower. not sure if RT is similar.
Dan, hope we never become experts on this. And I doubt there are any intuitive early warning signs. Would be out of character for this terribly disease.
Mike

Had my tongue biopsy today. I have a follow up with the MO (chief head and neck surgeon at the CCC) on March 13 to find out the results. They did not do a frozen sample for quick diagnosis, they want to send out the samples for full review. The MO is notoriously conservative and can't say something optimistic without adding a "but" to it, and that is fine because that is the reality of cancer. He said that all he saw was evidence of scar tissue (fibrosis) and nothing else that alarmed him. "But" only the test results will tell for sure.

I have been feeling much better and I have a peace of mind about this. January was not a good month for my recovery. I had 10-day stretch where I could not hold down food well, needed IVs twice, and lost another 10 pounds. Most of this was due to a reflux problem that was aggravated by the combination of changed diet during and after Tx and the effect of pain meds on the digestive system. But February was much better. I weaned off of all pain meds, started eating a more normal diet, virtually lost all pain associated with swallowing, and felt gradual healing at the BOT tumor site. I even gained a few pounds back. All of this led me to believe that the cancer was gone and not recurring. "But" you never know.

The next phase is the lymph nodes. I had one node involved at Dx and it still shows up on the PET and CT. It did not light up on the PET as showing cancer and is more consistent with necrotic tissue. The conservative MO wants to do a selective dissection up to levels 1 to 4. Another approach is to monitor it more and do just a removal of the one node with biopsy as a first step. I'll be back to get people's thoughts on those options after the 13th.

Dan

Dan,

Are you on anything for Acid Reflux? My Surgeon put me on Nexium for Acid Reflux. Are you being treated at Roswell Cancer Center?

Hope everything goes well on the 13th.

Take care,
Connie

Hi Connie,

I noticed the Lockport connection. Yes, I am at Roswell. I am on Protonix and Sucralfate. I had a constriction of the esophagus and was scheduled for an endoscopy and dilation the week in January that I had the vomiting issue. It got postponed a week and when they did the scope they saw evidence of some ulceration near the stomach.

I am 6' 1" and never had a serious weight problem but over the years my weight went up to around 210. I became borderline high blood pressure and had reflux issues, particularly after meals at nice restaurants. In 2010 I went on my own diet and lost over 20 pounds, and along the way dropped the reflux and BP problems too.

It was over a year later that I got the cancer diagnosis. I was 187 on August 3, 2011 the day of my first biopsy. I am 157 today. It think my ideal weight if I can get back there is 180. I need to get back into my old clothes!

Dan

Got the biopsy results yesterday for the tongue and mouth area - no cancer! We are very relieved.

My doctor then turned to the lymph nodes and is recommending selective dissection of levels 1-4 and the retropharyngeal node. I will start a new post in the proper forum on that topic because I want to learn more from those who have gone through it.

Dan

Congrats Danny!!!! Go celebrate!!!!

Awesome! I responded to your other post!

Dan,
How hard was it to do the biopsy? The ENT we saw today said it would be a nightmare for Kevin because of the spot being in the same place as before. He wants to do an MRI before a biopsy, but our mo has a differing opinion and says we should have the biopsy no matter what. So confusing. We were going to just say do the biopsy but when I asked if we could do one no matter what, he actually told me he wouldn't recommend it for previous stated reason...radiation scarring. DId they make a mess of your tongue?
Kathy

Kathy, Breathe. I am right here with you.
You dont know that this a cancer yet. You must have a biopsy done to tell you that, or not.
Kris's reocurrence was in exactly the same spot as his original tumour on the BOT. It was biopsied again with no problems, under a general anaesthetic.
Yes the MRI will help elucidate whats going on, but only a biopsy can confirm the presence of cancerous cells.
Remember too , that are many false positives following a PET.
My positive thoughts to you both,
Tammy

hope. positivity. Hope for the best and hang on my friend! We are here for you and Kevin no matter what!

Dr's can be confusing when they have differing opinions and it's frustrating, especially when both have great points. I'm with the Dr that is wanting the MRI, myself, he just makes more sense to me for what it's worth.


Breath, believe and hang in there you two!

Eric

I agree.. A biopsy is necessary to know for sure. Why wait go through an MRI only to have to have it biopsied regardless? That's the only way for a firm dx... Would you let them treat him without a biopsy? Unless of course you were almost certain it was a recurrence? Would they treat him without a biopsy? And since MRI's ct's and PETs all respond to similar things, infection, healing, inflammation what does your ENT hope to gain by making you wait? Plus - how comfortable would you be waiting? To see if it grows or spreads?
Good luck... and hugs and do breath. It could just be an area of inflammation.

Trust me...I am not comfortable with it, but the MRI is Monday and nobody would biopsy before then anyway. We will see what the MRI says before I make too much of a stink, just because it's soon. Kevin talked to our RO today and he also agreed that it could be healing tissue and that we could trust the new doc. I told Kev that I would stay out of it and he could decide. Frustrated, but being patient until MRI results. It was a tough week. I had my mom in the ER most of the day Monday, then back to the doc on Wed, Kevin's ordeal yesterday and oxygen delivery to mom today as well as several phone conversations with docs/nurses and radiology. I called them to see if the new doc's office had called them and they had not. I set the appt up myself to make sure we got it Monday. Now, if only I knew how to do a biopsy!!! ;o)
Thanks for the support guys!
Kathy

Kathy,

Sorry for the delayed response. The biopsy was not too bad at all. I had it on Thursday, March 1. When I was in recovery afterward the doctor told my wife that he had been aggressive in going after several spots to make sure he got every relevant area. My tumor was in the back of tongue and tonsil and that is the area he biopsied. By the time I went home I had moderate pain but really not too bad. They gave me some Lortab and I used that for a day or two and then switched to Ibuprofen as needed. The Lortab gives me some stomach and constipation issues and I just didn't want to start that again after finally being off of all pain meds the month before.

The doctor recommended that I stay home from work on Friday but I had already made an appointment to see a client on Friday morning under circumstances that would have been difficult to reschedule. (I am a lawyer, so there is no "heavy lifting" in my job.) So I was really hoping I could function and talk on Friday. As it turned out, I was able to do it without much trouble, and I went home immediately and rested the remainder of the day. The mouth pain was actually a little worse over the weekend, but my biggest problem was the headache and aftereffect from the anesthesia. It always seems to bother me and the headache with fatigue lasted almost a week. But I think that is just me - some people don't have that at all.

It did affect my eating. The swallowing pain came back and certain foods that had not been a problem became a problem again. I was very sensitive to hot (temperature) foods. Cold too. I even drink tap water at room temperature. When I saw the doctor on the 13th I asked if it was unusual for my mouth to still be sore. He said the post-radiaton tissue in the throat heals slower and that it would take 3 to 4 weeks to get better. This past Thursday was three weeks and he was right. It was noticeably different this weekend and I finally feel I am back on track. I find that it helps to take some Ibuprofen before a meal of real food. You never know what ingredient or spice is going to cause some pain, and that blunts it or prevents it.

I hope that helps. If you have a specific question just let me know.

Dan

Hey Danny awesome in the all clear!

Thanks Danny. They ended up saying the spot was only inflammation. I'm not 100% comfortable with no biopsy, but Kevin and his doc agreed so I stayed out of it. We go again in 3 months....
Thanks again.

You have to trust the instincts of the doctor who has seen so many patients with so many different manifestations of the disease. Most doctors don't take any chances or recommend any risk when there is ambiguity, so I have to assume the doctor was pretty confident about it being just inflammation. I'm glad Kevin does not have to go through it even though it would have given you peace of mind to do a biopsy and get a good result. I hope you can still have peace of mind until the next round of tests in 3 months.

Dan