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I'm a 44 year old female, never smoked. I had SCC of left lateral tongue margin found in late 2019, removed surgically with clean margins, but perineural invasion. Radical neck dissection came back with all lymph nodes clean. Did radiation anyway on there advice of the doctors just in case. 8 months later and the cancer's back. It's in my nerve, making my chin numb, and in the left floor of my mouth.

I'm being seen at UCSF in San Francisco. They say it's inoperable and want to start immunotherapy.

Questions:
  • Should I seek a second opinion? Honestly I don't want to go through a debilitating surgery if it doesn't have much hope of success. I'd rather go for quality of life over a small chance at a few more years, but I do have Stanford fairly close by.
  • What does immunotherapy entail?
  • Does insurance cover immunotherapy?
  • I'm sure there are questions I don't even know to ask, so any info or advice beyond what I've asked here is very much welcomed and appreciated.

    Erica

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I'm sorry to hear of the place where you now find yourself. While most people are not aware of it, perineurial invasion is a relatively common means for some cancers to spread, and some like ACC and MEC oral cancers it is the primary means. That yours is starting to move forward in your head vs posteriorly towards your base of skull is actually a good thing, as it is more readily addressable, and ultimately less dangerous to your life. That does not mean that after you successfully deal with this, you are done. You will always have to be on regular recalls and scans to ensure that given the nature of your cancer that is caught early, if this happening again.

I'm big on second opinions. But time is not your friend with perineurial invasion. So you will have to weight the delays in getting a second institutions opinion about all this. UCSF is one of the best head and neck cancer facilities in the US, and in general patients that I have dealt with over the years treated there would agree. I assume that the statement that this is not operable came from a multidisciplinary tumor board and not a singular individual. Also that any scans or imaging that you have had done confirm this unidirectional progression of it, and there is not more unstated in other locations.

I want to qualify the next part by saying I'm not a doctor, though I'm more experienced in the head and neck surgical arena than most people, and I have interacted with hundreds of oral cancer patients over the years and been involved in watching their case presentations, solutions and outcomes. So the caveat is that I am offering you comments based on those things. There is much also about your situation that is obviously not revealed in your post.

Stanford is in your backyard. If you could get into them with your current imaging and doctors notes for a second opinion, I would be in favor of it. If it could happen quickly. They often seem to lean towards surgery, and if it is only located when you have stated, that would be a starting place to make the secondary parts of treatment have to deal with less. But my guess is that metric has already been considered by UCSF given who they are.

Immune therapies are increasingly part of the armamentarioum that institutions are bringing into play when more radiation is not possible, and surgery would be too invasive, or the likelihood of irradiation unlikely to be successful. There are different types and each has a mechanism of action that is different from the others. We are only now starting to use some of them in combinations. The ones that we have the most history, as short as it is, with are immune checkpoint inhibitors. You have likely seen these advertised on TV as Optivo from BMS, and Keytruda from Merck. Both are FDA approved. They target the PDL and PDL-1 pathways that your immune system uses, and essentially, in a too simple description of a very complex idea, they take down the natural barriers that the immune system has in place to not let it fully loose. I can expand on this with you if these are the types of immunotherapy they are thinking of. Immunotherapy is tolerated well by most people, though a few adverse events have been reported and they will disclose them all to you prior to moving forward with it. Some of them are scary, but the incidence rate of them actually occurring in people is very very small. All this said, if they have chosen this path for you they believe that you are a good candidate for it. That said while these monoclonal antibody drugs are a huge breakthrough in treatments, they do not work in everyone. Science is still sorting out the whys of who they work in and why. There are some basic tests that give them an idea if this is the right path for you, but they do not work in everyone that they are given to.

The world of immune therapy is full of ideas that are in limited use or in clinical trials. And until we know why and what they have chosen this for you I won't comment on all the other things that might be used. But know that there are other ideas, and in a percentage of the population that gets them they are very effective. Your question about what this entails varies with what they choose, but these are mostly given like chemotherapy.

Insurance coverage for the FDA approved ideas has been now mostly approved, though in some of these ideas you will find that the manufacturer who is still wanting to collect data on how their idea works in the general population, will pony up to pay for or co pay for the treatments.

You should ask them for specifics about what it is they want to give to you. You should be totally informed and that is the legal basis for them moving forward- your INFORMED consent, whether the idea is radiation or immunotherapy. Failure to do that is a legal issue. You should ask them everything that they can tell you about what it is they intend to do, and do so until you are sure you understand the risks and rewards, and what the whole idea is, not just "immunotherapy"

When you post back with some additional information, I would be happy to comment on it. I can also point you at a patient or two that are in or have had immune checkpoint inhibitors to talk to directly if that is the type they are considering for you. I wish you well in your next steps with this. Brian


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Wow! Thanks for that in-depth response. I
My MRI showed the mental nerve as an active area as well as the floor of my mouth. Tomorrow I have a biopsy of the floor area scheduled to confirm the spread and then I have a video visit with the immunotherapy doctor (Dr Alain Algazi) on December 21.

After that visit I'll post back with their plan or options and I'd be extremely grateful for your help with all that.

And, yes, the inoperable designation came from the panel of doctors after my MRI.

Thanks again for your help. As a Veterinary Technician I have some medical knowledge that both helps and hurts sometimes.

Erica

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my husband is getting his 6 month PET scan today at Mayo after a second bout with OC. He had immunotherapy with chemo and then proton therapy at Mayo. He was told his was inoperable but Mayo said they had success with the above treatment mode.

A second opinion might be worth your while. His first opinion was to go home and die, the 2nd opinion had a solution. You never know.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
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The plan is immunotherapy with another drug under trial that's supposed to boost the effectiveness of the immunotherapy. The doctor said there's a 20% chance of remission, maybe higher with the drug undergoing clinical trial.

I'm told my other option is palliative chemotherapy.

Still thinking about the second opinion. I'm honestly not even sure how to go about getting one. In on an HMO that requires referrals for everything...

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I have a similar situation. Surgery Nov 10, partial glossectomy, clean margins, no lymph node involvement but with perineural invasion. I am debating the radiation treatment, especially since it seems likely to come back. The whole situation is hard to comprehend and get used to in my life. I guess I had better. UCSF is a good place to be. A second opinion is always good. MY second ENT is the one who did the biopsy and diagnosis after I spent 5 months with an ENT who prescribed various drugs for the sore on my tongue and never did a biopsy. I wish the best for you. Thank you for sharing your experience.

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Muddy, I'm so sorry to hear that. We've been in a cancer life in a similar time frame. I have been on a clinical trial for pembrolizumab. It was put in through an IV, took about an hour in total (including the usual faff). I felt tired for a day or 2 afterwards, but was OK.
For me I did get a rare side effect so can no longer have pembro and had to stop the trial.

Do you know what other drug is going to be put with the immunotherapy? Do you know what immunotherapy is on the table?


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
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Erica, Ive been following this and wanted to tell you how sorry I am reading of what you're going thru!!! You have already been thru so much already. Its never easy for me reading about recurrences as they bring back so many horrendous memories I wish I could forget from 10+ years ago.

Im so glad Brian replied to you!!! Hes one of the very few people Ive had the pleasure of meeting that is actually far more intelligent than almost everyone Ive ever known, plus he knows people all over the US at top facilities. I greatly admire Brian for not just being so smart but hes very kind and nobody here can hold a candle to all the things he's picked up over the years with all his affiliations and boards hes part of. Fortunately, hes taught me most of what Ive learned about OC over the years, but I dont know even a fraction of what he does and he has the connections too.

Wishing you all the very best with everything you are getting sorted out!!!

((((( HUGS)))))


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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My doctor told me that perineural invasion was present after they checked the tongue tissues from the surgery. They decided to use chemo with RAD. I don't like chemo, but I wanted to survive.
not sure why they say chemo is palliative for you, any metastasis to other parts of the body?

wish you the very best


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/2020
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Update

No spread outside the original tumor.

Started immunotherapy plus a drug in trial that use meant to boost the body's response to the immunotherapy.

I've had 2 doses, but shortly before the second dose a bump appeared on my neck, then broke open. Last Friday my right eyelid started drooping to the point that it is interfering with my eyesight.

An MRI was done that doesn't show why my eyelid is drooping and shows slow progression along with confirming the neck lesson is connected to the original tumor.

My doctor presented my case to his peers at UCSF yesterday and we're going to talk about how to move forward today.

He said he might recommend switching to standard of care, which is chemo (plus immunotherapy?).

With the side effects I've had from the immunotherapy (so tired I can no longer work, hike, or do the other things that make life worthwhile for me) I'm hesitant to start chemo and will discuss stopping treatment to enjoy the time I have left rather than prolong a life spent dealing with side effects and hating the fact that I can't do the things I love anymore.

I'm not sure what will be decided. My next infusion appointment is a week out, so I'll discuss with my fiance. Blah, it's all just so surreal...

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