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Re: PNI present, what to do next? [Re: gmcraft] #198508
06-12-2019 10:44 PM
06-12-2019 10:44 PM
Joined: Apr 2018
Posts: 11
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son_of_patient Offline OP
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son_of_patient  Offline OP
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So we moved to a different city in January and took a second opinion from one of the best government Hospitals here. This doctor over there did a thorough physical examination and came to the same conclusion that whatever is mentioned in MRI report is simply RT sides.

Fast forward to April, dad started complaining about back pain and pain in his hips, we took him to a "reputed" ortho and told ortho about his history of tongue cancer, he took X-rays of his hip and after some more examination asked for MRI of LS spine. We did that and he concluded it has nothing to do with cancer and put him on meds for slip disc pain relief and slip disc related physiotherapy which he said will take another month to show results. Dad's pain didn't reduce and post one month when we went back to the doctor he mentioned it's possible that given his age, it is arthiritis related pain and prescribed meds for arthiritis which we didn't consider because it felt like he's just doing hand waving instead of a proper diagnosis, meanwhile we took second opinion from another ortho and he also concluded slip disc and prescribed some other meds and alternative massage therapy for one more month.

We wasted 1 more month but the pain didn't come down, 2 days ago it became so severe that he could barely walk. We went to a third ortho and he asked for hip MRI. The hip MRI showed osteolysis in pelvic region and soft tissue development. We got him admitted to the best hospital in this city and had the best oncologist here look at him. The oncologist prescribed a PET/CT scan and we got the PET/CT done today morning. The results will come by evening. I'm really worried. I hope everything goes well.


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] #198511
06-13-2019 04:45 PM
06-13-2019 04:45 PM
Joined: Jul 2012
Posts: 3,178
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 3,178
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Son of Patient,

Good luck with the PET/CT results!

I’ve had back problems for 38 years, with several slipped and bulging discs since I was 21. A year or so later after that, I had intradiscal therapy called chymopapain (discontinued) injection into the spine which was only done at one place in the US. It helped, and brought me here today. it seemed like when i exercised by back improved. When I didn’t exercise it seemed as the back got weaker, and the pain increased sometimes.

As far as the back, with doctors appprproval, I think physical therapy to be one of the best treatments, if they approve it.

Now, I have osteoporosis of the femur. I’m suppoaed to start physical therapy one day, but haven’t found the time between all my doctor visits, but I’ll have to make room before it gets worse or need surgery!

Good luck with everything


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
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 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: PNI present, what to do next? [Re: PaulB] #198512
06-15-2019 07:11 AM
06-15-2019 07:11 AM
Joined: Apr 2018
Posts: 11
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son_of_patient Offline OP
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son_of_patient  Offline OP
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Joined: Apr 2018
Posts: 11
Hey Paul! Thanks for the reply. Please find time for yourself and your health. I believe nothing is more important than that.

So the PET/CT results showed that the primary origin site is lungs and from the lungs it has spread to the right leg compartment. Now the doctors are saying it can possibly be a second cancer, lung cancer which has metastasized but there is a possibility that it is TB.

His bronchoscopy biopsy was done today and after convincing the Doctor who was going to perform it, I was able to get some sample of the tissue for myself which I sent to a third party histopathology test lab to double check the conclusions of the hospital as I don't want to take any sort of risk.

Meanwhile, they're giving pain killers and bone strenghthening medicines to dad to relieve the pain which is severe as of now.

I really hope it is a silly issue like TB!!! The results will come out sometime next week, till then I have my fingers crossed.

Stay strong folks.
Love


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] #198513
06-15-2019 01:10 PM
06-15-2019 01:10 PM
Joined: Jul 2012
Posts: 3,178
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,178
NYC
Son of Patient,

I kind of figured they were looking for some type of cancer with the PET/CT, but it’s a possibility of it being TB you mentioned, which I know nothing about, but it seems the lesser of two evils!

I hope for the best whatever outcome, and feel you’re doing the best you can among the way, and hace my admiration! Here, there are immuno therapy treatments now making possible dreams a reality, so I hope that would be an option. If it’s needed.

Take care for now, and my thoughts are with you along the way!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
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 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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