Perineural Spread?

riles89

Hi all,

I am wondering if anyone has had experience with perineural spread? My fiance had two good scans January and April of this year following surgery, radiation, and chemo for SCC base of tongue. Post-surgery and in the radiation planning process there still appeared to be spread along V3 nerve. January MRI and PET/CT were OK. April MRI showed some asymmetric enhancement around a portion of V3, which was believed to be radiation treatment influence.

He had a scan last week, and the MRI showed some more enhancement along V3 and some other areas. PET/CT showed no signs of tumor recurrence, but ENT would like to do a biopsy--of which my fiance would have to go under anesthesia and the biopsy would be completed through the nose.

I've been reading and reading so much literature on the head and neck--more than I need for a lifetime--and most situations involving nerve spread say things that aren't optimistic. It can be managed, but can be difficult and there "needs to be more research." Amazing how my fiance's tongue can be reconstructed with a free flap from his forearm and reading scan images can be difficult.

Needless to say I am very nervous. If anyone has any information or experience, as a caregiver or patient, regarding perineural spread (PNS), please let me know. I would so much appreciate it.

All best,

Megan

johnsonbl

No personal experience to share...

But I know many of the wise, wise folks on this board are going to remind you that it's not cancer until the biopsy confirms it.  So, stay positive and take it one day at a time.

Best of luck!

Brandon

wbcgaruss

Biopsy

Since they see an area they are concerned about something could need attention

and a biopsy will confirm one way or the other.

You've gone this far and had surgery and treatment I would say get the biopsy to know

one way or the other.

Like johnsonbl says it's not cancer till they say it is.

And the sooner it is gotten and the smaller it is the better.

Keep on the positive side and don't over read on the subject all cases vary.

 

riles89

OK, thank you wbcgaruss and

OK, thank you wbcgaruss and johnsonbl. I will try to stay positive. Unfortunately the biopsy was pushed back due to limited OR time.

swopoe

 My husband was diagnosed

 My husband was diagnosed with tongue cancer in October 2015. After surgery, were told he had slight perineural invasion. So even though they got clean margins in the surgery and the cancer was stage 1, he had chemo and radiation. He has been NED since with no perineural spread. I am hoping your fiancé’s biopsy comes back negative, but I wanted to let you know that you were not alone in having to deal with perinerual invasion. Hugs and best of luck to both of you.

riles89

swopoe said:

 My husband was diagnosed

 My husband was diagnosed with tongue cancer in October 2015. After surgery, were told he had slight perineural invasion. So even though they got clean margins in the surgery and the cancer was stage 1, he had chemo and radiation. He has been NED since with no perineural spread. I am hoping your fiancé’s biopsy comes back negative, but I wanted to let you know that you were not alone in having to deal with perinerual invasion. Hugs and best of luck to both of you.

Thank you swopoe. I have been

Thank you swopoe. I have been reading that perineural spread is "rare," so it is nice to hear a success story (I know I have to stop reading!). My fiance has already had radiation and chemo following surgery last August, so I am hoping that if it is back treatment could be continued. Thank you for your reponse.

Julban

SCC with Perineural

My husband was diagnoised last January with perineural spread.  15 months earlier he had a small SCC on right temple removed.  We know now he had symptoms of perineural but no one caught it & he was misdiagnoised with mutlitple things for 15 months.  It is very rare, they said out of the millions that get SCC, 1000 per year get perineural.   They did the biopsy in March & even though it sounded so scarey, he walked back to the hotel that night because he didn't want to stay in the hopital.  He completed 35 proton treatments & 3 rounds of chemo/cisplatin on May 30th.  Reading about it is so disheartening.  But then I would look at the date of the article & it was 5,10 12 years ago & so much advancement has been made.   We are far from out of the woods but if I can help, please message me.  

PippyB

Hello from New Zealand. Love your comment wbpgaruss: "Its not cancer until they say it is". I need that right now just over one year out from SCC left tonsil and metastatic lymph node left nerve sheath and have been in remission after chemo/radiation but latest MRI result shows a possible perineural spread, can't recall what nerve but possibly causing unexplained facial pain and headache plus other. Have been referred back into hospital system for urgent review. Finding some scary stuff on line so will stop looking and focus on living in the moment as much as I can. Grateful to have found this site and also the specialist here who has found this issue. Am in good hands. Would love to network with anyone julban about latest treatments you come across on your journey.

PippyB

PippyB

Hello again. Two months later and I need to say now that my cancer was T1N1 Left tonsil HP16+ SCC and I am being told in NZ that it is extremely rare to see an HP16+ SCC cause perineural spread. We have a much smaller demographic cohort in New Zealand and so I am networking here so I can benefit from the wonderful bank of knowledge of this forum from a much larger population.

So our Multi Disciplinary Meeting discussed my case which was based on an MRI scan showing "subtle asymmetry in the vicinity of the left V2 nerve from the left foramen rotundum to the PPF and proximal portion of the left infraorbital canal with minor increased T2/Flair signal and minor increased enhancement compared to the contralateral side". Interpretation: Could represent post treatment change but perineural disease not ruled out.

On 31 October, the Multidisciplinary Team report says: "No convincing PND; but might be post Rx change. Further investigations required. Repeat MRI in 6 months (unless symptoms progressing).

On 24 November we met with the Radiation/Oncology Specialist who designed my radiation plan. He showed us my plan and the location of the V2 nerve, well outside the scope of the radiation plan, so we now know that the change in V2 nerve cannot be called radiation damage. We are now wondering if by default that means it is Perineural Spread? I can really identify with those who say they have never read so much. I had never heard of PN Invasion or PN Disease before, but now I understand heaps, however if I read forever I will never understand the complications of it all. My head is full of information and anxiety, a bad combination for sure.

My biggest anxiety is that 6 months to the next MRI seems too long! Basing a decision on symptoms is not great. A biopsy through the nose is very invasive, and has not been considered yet as far as I know.

Is there anyone out there who can give an opinion or share their experience on this ie, what is the recommended time to leave between MRI scans? I do know from my reading that this type of cancer is

• asymptomatic in the early stages, but that by the time symptoms become obvious, the disease is well advanced and the prognosis for the patient is much poorer. I do already have intermittent (confirmed non dental) upper rear jaw pain when chomping down on food on my left side, electric shock pain in ears both sides, aching across face from my jaw to my cheek bone, frequent headaches in various parts of my head and intermittent weakness in my left arm when using a fork to raise food to my mouth (not sure if this last one is relevant).
• can best be diagnosed with an MRI scan and there are three features which can indicate the presence of cancer, ie enlargement of the nerve, increased enhancement, and obliteration of surrounding fat planes. These three features if they are there, are relevant. The MRI ticks yes to the first two, and I am on the trail to find the answer to number 3.

Is there anyone out there going through this or have had this too? I would really like to network with you if so please do get in touch via this forum.

Thank you.

wbcgaruss

Hello.

I read a bit about perineural disease.

It sounds complicated and possibly hard to diagnose which seems to be your situation now.

I have never had perineural disease or your type of H&N cancer so I don't really have a lot to offer.

The only thing I can add is for you to ask your doctor if a PET scan may help in showing them what they need to see.

That's all I have to offer.

I will be praying for you.

NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

PippyB

Hello Russ. Thank you so much for your reply. I think I might know someone in NZ who knows of you. She is from a place called Whangarei. Does that ring bells? This same person also told me to contact the Oral Cancer Society in America, but I don't know who to speak to there. Can you possibly advise me on this.

It was your post on baroreflex failure when I think I first saw your name. Thanks to the information on your very informative post, I have now got a proper diagnosis in New Zealand from a neurologist for baroreflex disfunction. He explained to me the relationship between that, my gastro symptoms and the vaso vagal syncope episodes I was having. It is all now well settled down with careful diet. After being diagnosed also with gastroparesis, I found the Cleveland Clinic gastroparesis diet on line and followed it for a while until my orthostatic hypotension, or syncope settled down. Now I have slowly got back to almost normal healthy eating (not too much fibre and frequent small meals) just in time for Xmas and no more syncope episodes either. I thought I was in the clear as was in remission, until this V2 nerve thing showed up, so may be back to Start. Its good to be in touch. Thank you.

wbcgaruss

Hello, Pippy, you are very welcome.

I am sorry I can't say I know of the person you are referring to.

I am glad you have finally gotten a proper diagnosis.

You certainly have had your problems with baroreflex dysfunction, gastroparesis and the vaso vagal syncope episodes, and orthostatic hypotension.

I am so glad you found the Cleveland Clinic gastroparesis diet on line and it has made such a big difference for you.

As far as the Oral Cancer Foundation here is a link to their home page, check it out…click through the site and see what you can find…

https://oralcancerfoundation.org/

As far as contacting someone there I have no references of people to refer you to but here is their contact page in the link below for contacting them by email, mail address, or by phone and it also has a persons name Brian Hill…

https://oralcancerfoundation.org/contact/

Also here is the Sitemap for the whole site…

https://oralcancerfoundation.org/sitemap/

I am glad you are feeling better and I hope you can get through any remaining road blocks and get to full remission and recovery.

Its good to be in touch with you also and I wish you the best.

Take Care, God Bless

Russ

PippyB

Good morning and thank you Russ. Very much appreciate all that.

Blessings from NZ