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Lympho Vascular Invasion after complete removal of tonsil with ample negative margins

rjmeyers1
Posts: 9
Joined: Jan 2013

My wife age 64 was diagnosed with stage 2 SCC of the left tonsil and has had a radical neck dissection (biopsy of 33 lympth nodes all negative) and robotic surgery which removed the tonsil and surrounding tissue with ample negative margins. Surgeon indicated that she might be able to avoid Rads due to the success of the surgery but the pathology report on the excised tissue showed that LVI (LymphoVascularInvasion) was present and that Rads would be a prudent follow up.

A pre-treatment exam by the oral surgeon resulted in the recommendation to remove two otherwise healthy wisdom teeth on left side as the healing area around those teeth was too restricted to allow for adequate hygeine which could result in decay and better to get them out before rather than after radiation treatments.

She is considering not getting the rads as the recurrance rate is deemed low and all the downsides to rads treatments seem so negative. Her thoughts are to wait and see if in fact the cancer spreads (keeping a close eye on it periodically) and then if it does, agree to get the rads. It seems like one should always get treatment sooner rather than later but what if the treatment turns out not to have been needed afterall? Brittle teeth, burns, loss of taste, dry mouth, and God knows what else? Having a hard time getting my head around what to do. Any thoughts would be most appreciated. Thanks.

 

luvofmylif
Posts: 344
Joined: Sep 2012

My husband had intraoral laser surgery to tonsil/base of tongue. The surgery was very extensive lasting 14 hours and because of anatomy issues and extent of cancer at BOT couln't use( they tried ) the robot. Long story short margins were clear so he didn't have throat radiated. He did have  a right neck dissection at same time as above surgery and 3 weeks later had left neck dissection. The right side was positive for 3 lymph nodes and left side was completely benign. He, therefore , had radiation to right side of neck with concurrent Cisplatin x 3 doses, although, only received 2 doses due to hearing loss.

That's our individual story and one thing I have found on this site is that everyones cancer is unique and there are alot of different ways to treat it. The insitution where we were treated recommended surgery then based on operative findings and other diagnostic information followed up with radiation and chemo. But, many on here, in fact most, it seems went with the radiation/ chemo route.

I was and still do drive myself crazy asking or wondering which route is best and will my husband be ok, considering the path we chose. But, in the end all you can do is get as much information from the docs as possible, be informed and then go with your gut. When considering any decisions I also ask that particular dr, what they would do if it were them or their loved one. You have to go into it trusting the dr's with whom you have entrusted your care. I thank God everyday for all in the medical field who have helped us and spend their life doing so. When someone, such as a dr says they can help you beat this it is a priceless feeling and I will always be grateful to them and all behind the scenes, such as researchers who work to improve surivior rates and cure cancer, any cancer.

Trust and believe. What else can we do...oh, and fight. You and your wife will make the right decision and when you do will feel relieved because then you will be getting on with life and moving forward.

 

Joan

CivilMatt's picture
CivilMatt
Posts: 2873
Joined: May 2012

Rjmeyers1,

 

Welcome to the H&N forum, I am sorry you have to be here and I  am especially sorry for your wife.  You’ve nailed the primary question right on the head, “what treatments and how much”.  Of course we are all similar and all different.  I was given the option of wait and see after surgery on my tongue and neck, but the recommendations from my ENT pushed me toward rads and chemo.  Of course I was naive and did not understand fully the ramifications (side effects) might cause.  For myself only, I was never not going to go full bore or as they say here scorched earth treatment.

 

If my doctor gave me good odds on no recurrence with surgery only and if I was proactive and had good checkups every 3 months and if insurance (ahead of time) agreed to all scans needed for early detection, I might forgo the rads and chemo to start with.

 

I do not feel badly today, but I am not feeling like I use to either, rads and chemo do take a toll.  On the other hand, my scans have been clean and my checkups good.  The side effects seem to be diminishing a little, very slowly.  Knowing where I am today I think I made the correct decision for me.

 

Best,

 

Matt

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phrannie51
Posts: 3639
Joined: Mar 2012

I'm sorry you had to look us up, but I'm way glad you found this site....the people here are wonderfully supportive.  I had nasopharengeal carcinoma, and am 4 months out of all treatment.  I had radiation and chemo as my cancer was inoperable.

I guess I get hung up on words like "prudent" since the path report showed LVI was present.....personally, I'd throw everything they had at the cancer to help ensure it's irradication....I wouldn't want the possibility of a reoccurance hanging over my head.  That's just me, of course....everyone has to decide for themselves.  Radiation is a pain for sure.....I still have trouble tasting food (good for a few bites then the taste is gone).....and I still have problems with saliva....but I'm still very new in the recovery phase of all this.  It does get better every week, tho. 

There will be many people here who will pitch in on your question....so hang tight for some more answers.....

p

longtermsurvivor's picture
longtermsurvivor
Posts: 1769
Joined: Mar 2010

in this, you will have to simply make your best decision.  Obviously, perilymphatic or perivascular invasion connotes a higher recurrance rate.  OTOH, radiation in the area we are talking about has a significant complication rate.  The situation you describe is right on the edge for this decision.  Just remember that not all recurrances are easily treated.  They are not all caught early, and their geographic distribution doesn't always make them amenable to a simple approach.

 

Best to you.

 

Pat

rjmeyers1
Posts: 9
Joined: Jan 2013

Thanks to Joan, Matt, P and Pat for their quick response and insight regarding my question regarding my wife's situation. I am getting more info both online and will talk to the docs again tomorrow by phone regarding risk/reward of Rad/NoRad in my wife's case. 

We have pretty much decided to at least hold off on the wisdom teeth extraction for at least a week so that the surgical site has more time to heal. Her neck dissection was done on 12/17 and the robotic surgery was done on 12/21. She is just now taking some of her nutrition orally.

Pat, you said that there is a higher complication rate with rads in the area in question. Can you expand on this for me? Thanks.

Rudy

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longtermsurvivor
Posts: 1769
Joined: Mar 2010

I have personally been through two complete courses of radiation.  First for base of tongue cancer in 1998, then for a second cancer (recurrant after radical surgery) within the last year.  I have not yet had any of the big complications of radiation, but then if I live long enough, I certainly may.  There are plenty of other people who post here regularly, or occasionally, who have suffered some of the big complications of treatment.  Permanent inability to swallow is one such compllication, generally from fibrosis of the  upper esophagus, which is not spared rads even in tonsil cancer.  Same thing applies to breathing, with a number of people needing a permanent tracheostomy because of impingement on the trachea.

Vocal cord paralysis can be a permanet sequellae, as can damage to the spinal accessory nerve, leading to shoulder problems.  You kind of get the picture.

Radionecrosis is one of the more ccommon late sequellae of radiation to the head and neck.  Osteoradionecrosis  of the mandible is a very severe complication.  george and mike are regular posters here who  have had this problem.  there can also be soft tissue radionecrosis, though, which can lead to all kinds of other problems. 

Vascular problems, particularly involving the  carotid artery, are fairly common  problems as well.  I personally have a significant carotid stenosis which is going to need worked up in the near future, possibly leading to the need for a stent.  That is, if I want to avoid a stroke:)

It's a long, pretty intimidating list of things that can go wrong, Rudy, and unfortunately, some of these things are fairly common following rads, in the usual doses of around 70gray.  I am not saying any of this to turn you away from this treatment.  As I said at the outset, I have actually been through it twice, and I did this with my eyes wide open.  Without the treatment, I would simply be dead.  These rae the types of things that definitely fall in the "risk" category, though, counterbalancing the benefits achieved by enhanced cure rate.

 

Pat

 

 

rjmeyers1
Posts: 9
Joined: Jan 2013

Hi Pat,

Wow...that is quite a list of possible complications from Rads indeed! This is extremely helpful info as I am preparing all of my pre-treatment questions to review with the docs (both surgeon and radiologist) and this is info that I have not yet discovered under the  typical..."Side Effects of Radiation Treatment" monographs that I have read so far.

I just read about another approach to rads called Brachytherapy (implanted pellets) which I am going to ask the radiologist about. Another reason we are cautiously approaching Rads is that if this HPV originated cancer that is now present in the Lympho Vascular System is a low grade cancer, we don't want to blow our chances of getting radiation therapy later on if there is a full recurrance in the original or surrounding area of the surgical site (just read you can only get one treatment in the same area).

Am I interpreting this info correctly? What do you know about the Brachytherapy. Thanks.

Rudy

longtermsurvivor's picture
longtermsurvivor
Posts: 1769
Joined: Mar 2010

Ah, let me justy PM you.  There's quite a bit to review.  I need to see if I can find my most recent, hot off the press article on the differences that are becoming apparent to HPV and nonHPV oral cancers.  I don't know if I saved this.  If not I will see if I can retrieve it from ratface.  I know I sent it to him.

 

Pat

rjmeyers1
Posts: 9
Joined: Jan 2013

Pat,

Thanks. BTW...what do you mean "justy PM" me?

rudy

longtermsurvivor's picture
longtermsurvivor
Posts: 1769
Joined: Mar 2010

a red message when you log in, toward the top of the screen.  It will say you have email, or a private message.  Just click on it.

rjmeyers1
Posts: 9
Joined: Jan 2013

Hi Everyone.

My wife is leaning towards not getting the Rads as the surgeon said he was "OK' with that approach but with vigorous follow-up of course. He said that with the Rads however she would probably enjoy a 95% chance of a total cure. He could not give a success % if in fact the cancer came back and was treated at that time. Her stage II with clear lympth nodes and ample negative margins plus HPV+ makes her possibly a borderline case on the Rad/No Rad question. We have not yet spoken to the Radiologist for his opinion which of course is the next step. I'd have been back sooner but getting on this site is not easy as you all know.  Any thoughts? Thanks.

Rudy

longtermsurvivor's picture
longtermsurvivor
Posts: 1769
Joined: Mar 2010

I do have an opinion, but of course it is ONLY an opinion.  I don' tknow if you got my email,  the line of reasoning that suggests itself from our current understanding of the disease is as follows:  if your wife gets a reoccurance it will either be local or distant.  They have already said to you that they are happy with the margins of resection.  That lowers the risk of local reoccurance considerably, but does not lower it to zero.  If she gets a local reoccurance which is caught early, her chances of cure by radiation at the time of reoccurance are good. 

 

The perivaxcular and perilymphatic invasion increases her risk of distant metastasis.  That's the point I was raising earlier.  BUT if she gets DM, that process has already occured.  It isn't going to be affected by radiation, it is already in place.  And frankly, she won't be cured under those circumstances anyway.  So it is illogical to assume that radiation now matters in this risk. 

 

To further muddy the water, there is some evidence that in cases where HPV is positive, lower radiation doses may be effective.   There are trials being considered where the radiation dose of 56 gray is used rather than 70 gray.  This lower dose would decrease complication rates to radiation by a huge amount.  I hesitate to mention that,  because my bet is the radiation oncologist is gonna start squirming if you bring this up.

 

Rudy, my OPINION, for what it is worth, is that I would forego the radiation for now and rely on careful follow up over the first two years.  Having said that, I reiterate it is all a crap shoot.  Here's the story of my second cancer, which began in 2010.  I had my first malignancy in 1998, and was clearly cured by radiation.  I got a second cancer, located on the floor of my mouth, in 2010.  It looked to be caught early, and the ENT oncologist thought he could do an outpatient resection and primary closure with a high cure rate.  My pathology showed cancer up to the margins of resection, so we went back a couple of weeks later and I had a 14 hour radical resection and reconstruction.  The pathology was favorable, so follow up began.  Ten months later I got a reoccurance in the margin of my soft palate and in the tonsillar fossa---- not at all where you would expect to have one.   So they considered me for a complete second course orr radiation.  Lucky for me, the area radiation was enough different geographically from my first malignancy that they were able to pull it off.  That was 11 months ago, and thusfar I am NED.   My case proves you never know.   All you can do is take your best shot at this, and see how it goes.

 

Pat

rjmeyers1
Posts: 9
Joined: Jan 2013

Pat,

Thanks again for a clear and logical response to my exact question. I actually had these thoughts myself and to hear them articulated by you makes them more credible. I am sorry that I never received your email via this site. If you think it would be helpful please send it to me directly at rjmeyers1@aol.com. Thanks so much again for your time, concern, and hard learned experience.

Rudy

 

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Rick removed these comments because the comments were just too cynical.

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