The Oral Cancer Foundation Support Forum

Previous Thread
Next Thread
Print Thread
Scared... #197554
11-08-2018 11:19 AM
11-08-2018 11:19 AM
Joined: Nov 2018
Posts: 5
E
ERK Offline OP
Member
ERK  Offline OP
Member
E

Joined: Nov 2018
Posts: 5
Hello.

My father who is 54 years old received treatment for Oral Cancer last year. He was operated on 6th December, 2017 and received 31 rads plus 6 chemo. I am not aware about the specifics and will update them asap.

The operation was to remove the jaw which had the cancer and a skin graph was also performed.

He started experiencing severe lower back pain three days back and wasn't able to sleep. We consulted a doctor who ordered an X-RAY. The X-ray reports state that 'hilar shadows are seen prominent'. His hb is less than normal too. The operation did remove lymph nodes around the neck area. Has anyone else experienced this? Is hilar shadows prominence something to worry about?

Last edited by ERK; 11-08-2018 11:20 AM.
Re: Scared... [Re: ERK] #197555
11-08-2018 11:51 AM
11-08-2018 11:51 AM
Joined: Jun 2007
Posts: 10,171
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,171
PA
Welcome to OCF! Im very sorry to hear about your father!!! Going thru oral cancer (OC) at any age is not easy but at 54 he is still relatively young which hopefully will help make this a little easier on him. Hes been thru ALOT!!!! Recovery can be very long and difficult.

Please understand that this site is dedicated to OC patients/survivors and caregivers. We do NOT have medical degrees or backgrounds but are able to help each other with using what we ourselves have experienced first hand. The hilar shadow and hb may be common medical terms but Im sorry as a OC patient/survivor I do not know what they are or how those things affect patients or are related to OC. Around here we are from all walks of life and all over the world so you have a pretty good chance to come across someone with a similar issue or you can try using the search function to find posts. Im sorry I couldnt be of more help but its a bit outside of my current OC knowledge.


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
Re: Scared... [Re: ChristineB] #197589
11-12-2018 06:15 AM
11-12-2018 06:15 AM
Joined: Nov 2018
Posts: 5
E
ERK Offline OP
Member
ERK  Offline OP
Member
E

Joined: Nov 2018
Posts: 5
Christine, I am so sorry I didn't paint a clearer picture the last time. Frankly, I too did not know enough.

So, the chest X-ray showed a spot on the left lung. My father underwent a ct scan for it today. We will be showing the report to the doctor tomorrow. I have never been so scared in my whole life. I do not know what to do. My father is already very depressed because of the swelling and the fact that he cannot eat or speak properly.

The surgeon who performed the oral cancer surgery said that the operation was a 100% success and that my father shouldn't worry. He is one of the best in the country, but that doesn't stop me from imagining the worst scenarios.

By hb, I meant Haemoglobin. He isn't taking enough diet. He rarely feels hungry and refuses to eat things that don't give him any taste. As a result, he has lost significant weight and has become weak.

Do spots in the X-ray show up after a patient has received rads?

These are the details of the radiotherapy
60GY/30#
Right Face and Neck
Shrinking field technique
And chemo: 5 cycles of concurrent chemotherapy, Carboplatin 150mg

Also wanted to include the histopathology report from the post rad discharge note: Right Buccal Mucosa, GBS and gingiolingual Sulcus: Invasive poorly differentiated Keratinizing Squamous Cell Carcinoma with clear margins of resection and single metastatic lymph node seen (2/24+)

VERY CONCERNED about the metastatic lymph node point...

Last edited by ERK; 11-12-2018 06:23 AM.

Erk
Re: Scared... [Re: ERK] #197590
11-12-2018 09:54 AM
11-12-2018 09:54 AM
Joined: Jun 2007
Posts: 10,171
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,171
PA
ERK, no apologies needed! We do the best we can with the info given. Sometimes we dont understand complex things due to not working in the medical field.

Oral cancer (OC) patients are often depressed. This can even spread over to their caregivers as well. If at all possible, ask the doc if there is anyone your father can speak to there about his depression. He may need to take some sort of meds to manage his depression or anxiety. Its nothing to be ashamed of... most OC patients go thru this. This is important!!! Without getting help, your father may have this hanging around for a long time. Finding someone who talks to cancer patients will definitely help him to better understand what being a cancer survivor is and all those feelings are perfectly normal. Some have compared going thru OC to PTSD. One excellent thing about OCF is finding yourself among those who have been thru similar things with OC and have successfully beat it. Being here to talk about everything helps others who are alone and afraid, just having someone who ":gets it"... REALLY gets it goes a very long way in helping the patient to better accept everything.

Just remember when asking questions... Im very sorry but our site is made up of regular people just like you. We do not have medical degrees, years of medical education or clinical patient experience. Our replies come from living thru different experiences as patients or caregivers. That said, we may not be able to always answer your detailed medical questions. Not only this wouldnt be fair to you or your father if we would try guessing what the doctor means by writing certain things. Best to keep a journal with running log of questions to ask the doc on the next visit unless yoru fathers health changes and he needs to go in sooner. Ofter after finishing rads, patients will feel abandoned when they are used to seeing their medical team daily to not seeing them for weeks. Dont worry! Those docs still are on your fathers case so dont be afraid to call and ask questions or take him back for a check up if he isnt doing very well. In case this hasnt been explained yet ... the first 2-3 weeks post rads are the absolute hardest of this entire thing. Radiation is cumulative and continues working well after treatments have ended. This is why the first 2-3 weeks post rads patients continue to get worse before one day they wake up feeling only slightly less crappy which we refer to as "crawling out of the tunnel". Its when they have finally discovered they really are making progress, very slow progress but still they have made some improvements.

Intake MUST be increased or your father will struggle far more than he should. It very quickly turns into a very bad cycle of not eating due to it being difficult and having no appetite, not making progress and constantly playing catch up. Eventually when patients are not taking in enough to maintain their current situation they will become malnourished and dehydrated making an imminent hospitalization almost a certainty. Ive been down that road myself and felt so horrible I thought I was actually dying and was in the first stages of my body shutting down. I was not in good shape but not dying, just feeling terrible from not taking in enough. Every single day, your father must take in at least 2500 calories and 48-64 oz of water. If he is still losing weight when taking in that much then he will need to increase it to 3000 calories or even more., The more he can do the easier this entire thing will be for him. Its NOT easy to eat when you have lost your sense of taste and are having the side effects of rads like sore throat, sores in the mouth, no appetite, etc. But the patient MUST overcome those things and push to eat. If they wont or cant then a feeding tube is often the only option to get nutrition. When patients finish rads, they usually do feel pretty lousy. If they've lost a considerable amount of weight, that in itself tells everything... their intake is much too low and must turn around right away. A nasal tube may be the easiest for your father as its more of a temporary thing. Most patients will begin having their sense of taste of a few things come and go after about a month post rads. This can further cause depression when patients think they're finally making progress with being able to taste something and it tastes as it should. But then after a couple bites their sense of taste is back to what it had been... everything tasting burnt or like cardboard or charcoal.

As far as bloodwork, Im sorry but I do not know much info about that. One thing Ive noticed in almost all OC patients is their white counts (needed to fight infection) as are the red counts usually very low where some (myself included) have had to get procrit shots to help boost the patients blood counts back up. Those shots can come with side effects too.

As far as a path report, we may not always be able to interpret it correctly without having medical backgrounds. To me it appears your father may need to have further surgery to remove lymph nodes or maybe it means that he had 2 out of 24 removed that were cancerous? Im very sorry but Im not able to guess what these things are supposed to means. As part of my follow up 9 years post cancer, twice a year I still get bloodwork (checking my thyroid levels) and chest xray (to monitor "a spot" on my lung. For me the "spot" has not changed in over 6 years so it isnt anything I worry about. In fact I rarely remember I have it.

Hang in there!!!


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

Support OCF
Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,171
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
LRG, jennirains, Chalice, G Todd, Chell5
11798 Registered Users
Forum Statistics
Forums23
Topics17,323
Posts192,620
Members11,798
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.6.2