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PNI present, what to do next? #196109
04-11-2018 07:30 AM
04-11-2018 07:30 AM
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son_of_patient Offline OP
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son_of_patient  Offline OP
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Hello everyone!

Pretty much all the information related to the case is present in my signature.

My dad just had surgery (also mentioned in the signature) and the histopathological reports showed the presence of PNI. Doctors will tell us what is the planned course of action coming Friday. Before that I wanted to gain some knowledge to make sure that we opt for the best treatment strategy. Now, I went through some research papers and I have the following information (feel free to correct me):
  • PNI in general increases the probability of locoregional recurrence (recurrence in the same place), distant metastasis and reduces the disease free survival period.
  • PNI presence often calls for adjuvant radiotherapy.
  • Whether or not radiotherapy helps depends on a lot of factors, including the focality of PNI
  • Till now there is no conclusive research on whether chemotherapy helps specifically for PNI or not


Now, I have the following questions (as of now):
  • If margins and nodes are clear of tumour and PNI was detected in tumour, does that not mean that the nerve branch where PNI was present has been cut off and tumour was not able to reach the margins or the nodes from that nerve? Since the margins and nodes are clear of tumour, so why should the probability of LR increase? Similarly, why should the survival period decrease?
  • Is there anyone else who faced a similar situation? pT1N0M0 with PNI present? What did you do?


Looking forward to some helpful information from you guys.
Kind regards
worried son


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196114
04-11-2018 06:01 PM
04-11-2018 06:01 PM
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Posts: 3,128
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PaulB Offline
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Welcome son of patient!

I just mentioned you in another post with a new member, who has PNI in the tongue found after surgery. I asked they contact you if they get a chance.

I’ve had PNI two or three different times, i forget, and was able to beat it last time, so far! There is still much to be learned about this type of cancer, and not too sure how much they accomplished since mine? You may know more than me, as I don’t recall discussing it much here since, and had to think twice before posting, and seems so long ago (a good thing).

It’s probably not done everywhere, but I had my PNI resected with a radical neck dissection in 2012, and High Dose Intraoperative Radiation done during sugery. This was the first part, and after 4-6 weeks recovering, I had chemo, Erbitux and taxotere, along with IMRT radiation.

My second PNI was almost a year later, after a resection with my carotid, did the same radical neck dissection after testing, and IORT, but was sent for Proton Radiation with Carboplatin about 6 weeks later, which seemed to do the trick! Tomorrow I go for my 6 month PET/CT.

I just realized the time, so I hope this little bit helps!

Good Luck!




10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: PNI present, what to do next? [Re: PaulB] #196115
04-12-2018 06:48 AM
04-12-2018 06:48 AM
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son_of_patient Offline OP
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son_of_patient  Offline OP
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Hi Paul!
Thank you so much for sparing time and replying to my post. It's really good to know that you successfully defeated PNI twice! I'm really happy for you. Hopefully the PET/CT went well for you!

I have some questions for you:
  • First time when PNI was detected, was it detected through some physical tests along with the tumour and then surgically resected? Or found in histopathological analysis of surgically removed tumour and then the doctors concluded it must be present in the vicinity of tumour and can be resected?
  • Any side effects you experienced from radio/chemo? What did you/doctors do to ensure that the side effects are minimum?


Take care Paul!


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196121
04-12-2018 09:13 PM
04-12-2018 09:13 PM
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PaulB Offline
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PaulB  Offline
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Hi son of patient, i’m sorry for the delay as i got back home at 7pm, after a long day, but it was worth it since my PET/CT was free of cancer!

To answer your two questions:

1. All of my PNI recurrences was found after the resection found upon further analyses of the tumor biopsy, so it wasn’t known before or during my surgery. They were found by the pathologist later on. My doctor, a radiation oncologist, oversaw the head and neck cancer departments, and co-chaired head and neck surgery, who suggested the treatment plan for the PNI I agreed upon, twice. My first PNI started in one hospital, quite reputable, but my surgeon left the practice, and the treatment suggestions was kind of minimal, I thoight. I quickly interviewed several more places, and decided to go with one particular head and neck radiation oncologist, and his team, due to his reputation i had read about, and believe it was the best choise I made. I’m at another cancer now, but came with the my surgeon at my last hospital.

2. I hate to admit it, but i have debilitating side effects for 9 years, most from the Induction Chemo in 2009, but all the recurrences and treatments following added to my issues. I don’t think much about it now, initially i did, and accepted certain lifestlyle changes, and do what i can.

I hope this helps, and ask any time!

Paul


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: PNI present, what to do next? [Re: son_of_patient] #196143
04-13-2018 08:58 PM
04-13-2018 08:58 PM
Joined: Apr 2018
Posts: 9
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son_of_patient Offline OP
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Posts: 9
Hi Paul! Good to know that your CT/PET was clear.

Thank you so much for answering my questions. It means a lot to me.


My Friday's visit to the doctor resulted in the following conversation:

  • Depth of tumour is 6mm (>5mm) and PNI is present, therefore they have decided to go forward with radiotherapy which the doctor said will be 5 days/week for 5 weeks (25 days in total)
  • I asked him that since there isn't any detectable tumour present then how will we know even after radiotherapy whether or not it has been effective. Doctor said that radiotherapy is only to decrease the chances of recurrence.
  • I asked him about the side effects he said: discoloration of the area where radiotherapy is done and dryness of mouth. I asked if the side effects will be permanent, he said they employ techniques to ensure from their end that the side effects are temporary.


To me it seems that the side effects will be visible immediately however I won't be able to measure the positive effects.

Is there something I should watch out for, Paul?

After your first radiotherapy, do you happen to remember what were the side effects? Did you have any permanent side effects from that first radiotherapy treatment? I will ask the doctor about the possibility of those side effects then.

Any relevant questions that I am missing, which I should be asking the doctor?

Kind regards


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196150
04-14-2018 04:19 PM
04-14-2018 04:19 PM
Joined: Jul 2012
Posts: 3,128
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PaulB Offline
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PaulB  Offline
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Hi son of patient,

I must say, you’re well versed with head and neck cancer at this time! I remember knowing nothing when I was first diagnosed, not even who an ENT or an Oncologist was, even though I was seeing both lol, but we learn quickly!

With that, I’ll try to answer your question:

I know some treatments can be different for tonsil cancer in the oropharynx, which I had, vs oral cancer

My initial cancer, primary in tonsils, and bilateral lymph nodes were treated with 70Gy IMRT, lesser to uninvolved lymph nodes. They didn’t want to do chemo at that time, due to my poor condition from prior Cherno about 9 months earlier, which floored me, so that wasn’t offered with my first radiation treatment.

I’ve had IMRT radiation for a recurrences with 25 sessions, 50Gy, after about 30Gy with Intraoperative Radiation. In my case, my RO, Radiation Oncologist, said 50Gy would not be enough! Prior to that, my then current RO and another, only offered 50Gy, and when they heard who I was seeing, they said I was in good hands, so I didn’t see them.

I received a printout, and was informed of the possible side effects from radiation. Hopefully they counciled all parties, gave you one, if not, you can ask for one and any questions.

It takes about two weeks or 10 radiation sessions for most of the side effects to start showing, but some things can start earlier in some people. Side effects depends on the radiation dosage in Grays, areas radiated, duration, and frequency, if I got most right lol. A few years ago, I knew it like the back of my hand!

Magic mouthwash was a savior as was taking thrush medication, pain meds like oxycodone, later on it was a stronger opioid, and having my mouth sprayed out daily at the radiation center. I didn’t have it for my initial radiation, but having mouth guards were helpful, so I have heard.

Side effects are broken down into short term, less than 3 months, and long term side effects lasting longer than 3 months.

It can be rough from midtreatment to just as long as radiation lasted, in my case 7 weeks, then other side effects.

I think dry mouth persisted for years! Maybe two years ago it seemed to lessen, and no longer use OTC dry mouth products, but still carry and use bottled water.

Depending on area radiated, the thyroid can be effected by hypothyroidism long term, so I take thyroid medication daily.

All my teeth were removed due to recurrences, and treatments, but you wouid need prescription fluoride treatment and impeccable oral care to help preserve the teeth, but sometimes that’s not enough in some cases.

I would suggest another opinion or two at a CCC or CC, I think it was the best thing I did. Hopefully, there is more time for you to do so. Treatments from surgery to end of radiation should be kept around 100 days from what I recall.

I hope this helps, and probably mixed up my responses. I think most will fall into place once treatments start!

All the best,

Paul





10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: PNI present, what to do next? [Re: son_of_patient] #196153
04-14-2018 10:13 PM
04-14-2018 10:13 PM
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Posts: 9
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son_of_patient Offline OP
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son_of_patient  Offline OP
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Posts: 9
Hi Paul!

Thank you so much for your reply! Without kind humans like you who choose to share their knowledge and experience, it would certainly be difficult for someone like me to learn. So thanks once again! smile

I'll try to summarize your reply in points for my benefit and for the benefit of others who may find themselves in this spot:

  • You had cancer in tonsils and bilateral lymph nodes for which you received chemo and chemo had a harsh response.
  • 9 months later, you underwent IMRT: 70 Gy, 5days/week for 7 weeks, a total of 35 sessions.
  • Before radiotherapy, you received a printout which had all the possible side effects, which I will ask the RO to do.
  • Side effects experienced by you started approximately after 10 sessions, this varies from patient to patient and from the dose and frequency of radiation, intuitively I feel, this makes sense because every adjacent part/tissue should have an upper limit on the accidental dose that it receives, for example cells in salivary gland may have a limit of, say, X Gy and if the radiation dose exceeds X Gy that may affect the functionality of salivary glands. Similarly, the cells undergo cell cycle and in some phase of the cell cycle it might be more sensitive to radiation than in the other phase so frequency will also determine side effects.
  • Side effects which one should look out for:
    • Dry mouth.
    • Hypothyroidism
    • Teeth requiring extra care.


I'll ask doctor about the feasibility of mouth guard, what does it look like? Is it like some material which covers all your teeth?

What is CC/CCC?

I have to visit the doctor on Monday to get dad's nasal feeding pipe removed. I'll make sure to ask all the relevant questions. Thanks Paul!

Kind regards


Son of patient with moderately differentiated squamous cell carcinoma of the tongue.
Histopathological report results post surgery which involved resection of tongue with sufficient margins and neck dissection upto level IV:
Staging: pT1N0M0
Margins are clear, so are nodes
PNI present
Degree of keratinization is moderate
Brynes infiltrating pattern 3

"Impediment to action advances action. What stands in the way, becomes the way." - Marcus Aurelius
Re: PNI present, what to do next? [Re: son_of_patient] #196154
04-15-2018 04:31 AM
04-15-2018 04:31 AM
Joined: Feb 2015
Posts: 34
Boston suburb
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tlc356 Offline
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Boston suburb
I believe CC = cancer center, below is from "abbreviations" on this site.

CCC - Comprehensive cancer center or clinic; A tumor board at a cancer center will include doctors trained in different disciplines. Having your case presented and evaluated by this type of multidisciplinary team will give you the best options for treatment, considering all possibilities from their different areas of expertise.

I don't know if this "CCC" term is used in India. Certainly you will have hospitals that specialize in cancer (and if there are choices, the one with a strong history of working with Oral Cancer is best).

In my case the CCC warned me that the use of any alcohol would cause the cancer to start again.

Last edited by tlc356; 04-15-2018 04:34 AM.

SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: PNI present, what to do next? [Re: son_of_patient] #196156
04-15-2018 07:02 AM
04-15-2018 07:02 AM
Joined: Jul 2012
Posts: 3,128
NYC
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PaulB Offline
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Thank you tlc356!

I did not see he was in India! You're correct in your CC and CCC terms, although they are abbreviations many use, so it's name doesn't mean much as there is no license or requirement to use such term, so many do. There are two organizations that are highly regarded, and those are members of the NCCN and NCI, that use designated CC or CCC, which you can find here. Another place I use is U.S. News Reports Best Hospitals, where one can probably find most all the institutions from the NCCN and NCI centers., I look under Cancer and ENT, which will show the best hospitals by rank in the U.S. for the best hospitals, then go to the hospitals cancer and otolaryncology web page, and find out more. It's not a difficult process. Still, I found the best hospital eventually, that wasn't on any of the listings, maybe now since it joined another hospital, and that was the reason I bypassed it from the beginning, but wound up there at the end! I only go in NYC where I live, and had treatment in NJ for Proton Therapy since none are in NYC, yet, though there

Son of Patient,

You're correct in your analysis! Each area has a maximum dose toxicity level, and radiation dosage is kept in those limits. I have permanent side effect, arm paralysis, from brachial plexopathy, from radiation due to a recurrence near the collar bone in level V. Usually they do not radiate level V or are kept to a minimum dosage, since tumors are less frequent there, but I was warned before of the possible side effect.

The material a mouth guard uses, maybe vinyl.

One should get a dental exam before radiation, and have teeth repaired, and if they can't be repaired, they should be removed. After teeth removal there should be 2-3 week, closer to 3, healing period before doing radiation. The dentist should fit a mouth guard.

Yes, tumors go through a cell cycle before death. I forget it mostly, but recall G0, G1, S G2 and M phases.

There can be many more radiation side effects some that are more common, less common and rarity. I thought there was a page on radiation, IMRT here? It's probably best to look there instead of me trying to repeat as much as I recall, but can help clarify any questions. I've read just about every page here on OCF. What I recall is another story lol!

Why are they removing the nasal tube now when one may need it during radiation? They can still use it during radiation on the inside of the mask. If one is put in after radiation has already begun, it should go on on the outside of the mask. I always had a peg tube, so that was no bother, mostly. Now, they don't like to use a tube until it's needed though.

When does treatment start?

I hope this helps, and read up here if you like!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: PNI present, what to do next? [Re: son_of_patient] #196157
04-15-2018 08:48 AM
04-15-2018 08:48 AM
Joined: Oct 2012
Posts: 1,045
Toronto, Canada
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gmcraft Offline

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Son of Patient,

Like PaulB said, there are a lot of possible side effects from radiation (and chemo, for that matter). During treatment, it’s important to make sure the patient isn’t dehydrated. This can happe very fast and can make the patient feel really awful. The other is mouth sores. These need to be monitored so that there is no infection.

You should ask the doctor how much radiation your father is going to get. My husband got 70 grays (gy) initially and then 20 gy twice in a different area. What the patient gets each day depends on how many days the radiation treatment lasts — my husband initially got 2 gy per day over 35 days, then the next two times he got 4 gy per day over 5 days each treatment.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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