Recently Diagnosed

Darkdancer333

How long after biopsy do they

How long after biopsy do they start treatment??? My friend at work took him a month

CivilMatt

Darkdancer333 said:

How long after biopsy do they

How long after biopsy do they start treatment??? My friend at work took him a month

Try to enjoy yourself, it is hard, but you will do great!

Dd333,

A month is a good number. Like anything it may be longer or shorter.  Once you are put in the que and treatment begins it feels like treatments are slow, but you are on your final week and then it is over and the “healing (recovery) time clock” starts up and it is generally so slow you question what has gone on and whether you are proceeding at a normal pace.

As for post biopsy, there could be dental issues, there could be a PEG in your goody bag, there could be second opinion, another scan, another biopsy, etc…  There is the decision on treatment plan (surgery, chemo & rads), those are the favorite choices at the H&N challenge and they will help you arrive at the best choice for you.

If you are ready and serious, 30 days minimum, 73.8 days maximum.  Now take on the day.

Matt

Darkdancer333

 

 

Thx Matt

Doc did say I may possibly  be able to go stream, lake  fishing in MAY .. LOL he said no boat fishing.

Im a fresh water type of guy anyway.. Fly Fishing ftw!!!!!!!!!!!!

CivilMatt

Darkdancer333 said:

 

 

Thx Matt

Doc did say I may possibly  be able to go stream, lake  fishing in MAY .. LOL he said no boat fishing.

Im a fresh water type of guy anyway.. Fly Fishing ftw!!!!!!!!!!!!

Fish on.

Dd333,

I think that doctor is trying to bait you into revealing your favorite fishing spot. He has hooked you with this diagnosis and now he is just trying to reel in a big one. It has to be true that a bad day fishing is better than any day with H&N issues.  Maybe, you should tell me where your favorite spot is so that I can check it out for you.  

Matt

Darkdancer333

Rubicon River in the Tahoe

Rubicon River in the Tahoe area.. California. In my state where i live now is the Wenatchee River

Darkdancer333

yesterday was PET scan. Still

yesterday was PET scan. Still havent heard if anything else showed up. I guess as they say no news is good news. Tomorrow is biopsy and praying for HPV+.

Today was paradontal, next week cavities and extractions.. I am anxious to get this treatment started.........

 

AnotherSurvivor

I was Stage III T3N1M0 +HPV

I was Stage III T3N1M0 +HPV SCC.  All of that may sound obscure now, it will become basic in a week or two.  I am 65, now 13 months post.

Good news is you are infected in a new era for cancer, treatment is now highly standardized and very effective.  There is an ongoing debate here  on the actual odds of good recovery, usually the number bounced about is in the 90% range.  There seems to be some obscure statistics on that number, but the reality is your odds are pretty good, on the cancer.  Be aware there are side-effects that are unpredictable.

Bad news is you are in for a bad time that will make May fishing unlikely, at least for this year.  On the otherhand there are posters here who were running marathons in their first year post.  It depends.

I would anticipate a FULL YEAR to something like a complete recovery.  You will probably be active and feeling better long before that, but it takes a good bit of time for the tissue hit by the radiation to heal.  If they hit you with Rad and Chemo, you will lose weight.  A lot of weight, probably more than 20 pounds.  Getting down food will be a struggle, and your wife/partner will get pretty anxious, probably posting here for options.  This site is probably a better source than your dieticians.  You will probably get pretty dehydrated.  Your chemo infusion center will  probably morph into a drip hydration center that you may end up visiting daily.  Consider some form of central line like a port or a PICC line, you will get very tired of getting stuck by needles.  There is something called a phlegm pump that you will probably want for the mucusites.  The really sucky part usually starts week 3 or 4, but 'it depends'. 

But, at one year post, aged 65, I am headed to Aspen for a week of skiing in March, Europe for a museum thing (for the wife) in April, and then probably we will have to do all the promised house refurbish.  At six months post I was back doing geology field work, but that was because I was stupid and determined.  Now that I'm 'better' sleeping 9/10 hours a day seems reasonable and actually rather civilized.  That works best with a cat, a proper nap/lap cat can knock you out in seconds.  For the next 3 months expect that your wife will be pretty much in charge, also expect adult children to be involved.  This stuff hits hard, but you do recover, but not near as fast as you think you will going in. 

Darkdancer333

My wife's english lol she

My wife's english lol she will have to find a Russian support site. If anyone knows of one that would really help. She speaks english and can read a little but this site would be way to advanced. 

My Doc told me May I perhaps can lake fish ..... He just said no boats.......

AnotherSurvivor

I started in Nov 16, expected

I started in Nov 16, expected to be skiing in March 17, and in Berlin in April.  I finished in Jan 17, and had to will myself to get out of the wheelchair and walk to my last rad hit.  When the weight comes off it is all muscle, perversely it leaves the fat pad.  I stress that the cancer is very treatable, but the side-effects and collateral damage can be more dangerous, and they are very hard to see coming.  I passed out on the floor repeatedly headed into my first run to the ER.  Chemo shock with pulmonary embolisms.  March 17 I was just getting off bottled oxygen, and beginning to eat whole foods again.  I was told I was having a good recovery.  Prior to all this my only hospital time was from sports injury.  Four years ago I did a two week class in whitewater rafting and worked as a partime guide.  I had to give up a Grand Canyon permit when this stuff hit.   Expect changes.  Attitude helps, but physiology governs.  Someone at your treatment center speaks Russian.

Repeat daily: Calories = recovery.

Darkdancer333

Good News

Today had biopsy and the cancer is what was expected. 1 lymph node, SCCbot. MY PET scan i was worried about showed nothing else added!!!!!!!! My age thats always a worry since I am high risk for Colon and Prostrate Cancer. Doctor told my wife 87-90% cure rate. SO that means I am HPV positive.

Strike one was cancer diagnosis 

In a silly way I compared this experience to a baseball at bat. 3 three strikes is a difficulkt battle but winnable

HPV+ was like avoiding strike 2

No other cancer located on PET was like strike 3 avoided. This was the scary one because I am a high risk for Colon and Prostate cancer

So now the battle begins!!!!!!!!!

 

 

 

Pattyperson

Kimpallis said:

welcome I am also new to all this

 

Apologies In advance ( grammar/spelling  sucks, I’m typing on an iPhone just had my surgery and I’m on pain killers and I have add) 

 

 

Hi my name is kim And I’m 34 years old I Am non smoker hpv- negative. I had leouplakia for years but dentist didn’t think it was an issue then I went to a new dentist  and he said I should get it biopsy and while waiting to get it done I had gotten what doctors  thought was hand foot  and mouth then they thought cold sores etc even the ENT thought it was nothing turned out it was SCC  took for ever to get labs and results at the military hospital luckily the surgery seemed to complicated to do at the army hospital and he refers me to a bigger hospital  here I am today I just had a neck dissection and partial glossectomy on the right side of my tounge on 5/feb18  at first a lot smaller on the scans I was t1 N0M0  but wjwni changed doctors I was T2NOMO before surgery I am waiting to find out about what next when the tumor board meets this week and my follow up is the 16th of this month. It’s great they found it early and so far I’m recovering and reading As much as I can from this surgery. All I can say is good luck and ask as many questions as you can and if they recommend  surgery  now when it’s this early go for it and get it all out. I was in the hospital for 2 Days by my choice I could have left after a day but they took out a little more tounge than expected but I feel great and look forward to Everday. Feel free to message me if you have questions as I am still new to all this  myself 

Hi

I am glad you are doing so good after surgery. I am going to have my surgery soon, half my tongue and neck direction and new tongue formed from my arm.   They told me 3 days in intensive care then 10. Days to 2 weeks recovery.  How bad was the surgery and how did you get out in 2 days?  do you have a tracheotomy in your neck? Do you have a feeding tube?   How are you eating? Can you swallow or talk? Sorry for all the ?.. Patty

Darkdancer333

Pattyperson said:

Hi

I am glad you are doing so good after surgery. I am going to have my surgery soon, half my tongue and neck direction and new tongue formed from my arm.   They told me 3 days in intensive care then 10. Days to 2 weeks recovery.  How bad was the surgery and how did you get out in 2 days?  do you have a tracheotomy in your neck? Do you have a feeding tube?   How are you eating? Can you swallow or talk? Sorry for all the ?.. Patty

I NEVER HAD SURGERY THEY JUst

I NEVER HAD SURGERY THEY JUst did a biopsy. My surgery is my teeth lol 3-4 extractions coming up this week. 

I havent started treatment yet that comes in about 2 weeks

OKCnative

Darkdancer333 said:

I NEVER HAD SURGERY THEY JUst

I NEVER HAD SURGERY THEY JUst did a biopsy. My surgery is my teeth lol 3-4 extractions coming up this week. 

I havent started treatment yet that comes in about 2 weeks

Make sure YOU feel you are

Make sure YOU feel you are healed and ready for treatment to begin before it does. If you feel your mouth has not healed from extractions or the biopsy, then insist treatment be delayed by say a week.

I had to insist my treatment be delayed because my cancer center wanted me to begin radiation treatment only a couple of days after my tongue biopsy. I knew that with radiation my tongue would not continue to heal (or at least it would do so much slower) and at that point it was still very sore. A week later it was back to normal, so I agreed to treatment.

I say it over and over, but a patient cannot go through treatment simply showing up and nodding to everything the doctors say. You must take charge or your own treatment and recovery. You know you better than they know you.

Eye of the hurricane

OKCnative said:

*Sorry, Long Comment!

*Sorry, Long Comment!

The bad news is you've found yourself in a place where you need to introduce yourself to a Cancer Survivor Network. The good news is, this site is full of posts because we've all pulled through it or are successfully going through it right now!

My diagnosis sounds identical to yours; I noticed an enlarged neck lymph node and was subsequently diagnosed with SCC at the base of my tongue (a bit larger than yours) and stage 3.

I'll jump to the end and then backup - I'm 4.5 months post treatment and virtually back to 100%. My only negative post treatment symptoms at this time are occasional dry mouth (mostly just at night) and a slight lump feeling when I swallow (scar tissue). The positive post treatment symptoms (yes, there can be an upside) are that I no longer have a craving for sweets (I eat them and enjoy them, I just don't crave them anymore), I can't stand the taste of soda pop any longer (the syrup tastes like those really cheap diet sodas you get at the dollar store) and I used to drink diet Dr. Pepper all day long. I'm also holding at my ideal weight at 170lbs and was 185lbs prior to treatment (I intentionally bulked up to 200+ pounds right before treatment started).


A couple of things it looks like you've yet to encounter.... I assume your docs will look to perform a biopsy to confirm the SCC prognosis and confirm either HPV+ or - status. Assuming the biopsy comes back positive for SCC and regardless of the HPV status, you'll then discuss treatment options - I say "options" because that's the language you're docs should also use because you do have options with a SCC confirmed diagnosis. Those primary options include; tumor surgery, lymph node surgery, chemo and radiation. Some people get one, multiple or all of those options.

While every diagnosis is unique to an extent, the treatment plans can vary widely - even from doctor to doctor.

I can not stress this enough - meet with as many doctors as you need to so that you feel 100% confident in your team and your plan. Don't just sit in the doctor's office and nod.

Also, read this board inside and out. You'll find that your docs are well meaning but they miss a lot when it comes to how you will personally deal with your treatment and the side effects. I've found far more valuable information on this board than I received from my cancer center. Read this board and make a list of tips others have shared and start getting things in order. Also note any questions you have for your doc and take that list to appointments. Don't be afraid to take charge of your treatment. I changed docs during mine early on and I'm so glad I did. Also, I am so thankful I recorded all of my doctor visits so I could review them later. You'll be surprised how differently you remember things or how much you don't remember at all because of the shock of it all and the fact it can be overwhelming.

That's my general advice I'd give to anyone and I doubt many here would disagree with it.

 

Now, I'll give you MY OPINION based solely on my experience (take from it what you will).....



First, have you been scoped? (tiny camera placed up your nose and then down your throat to look for the tumor). My first ENT never attempted to scope me - wanted to go straight to neck dissection and just biopsy the removed nodes. I fired him immediately.

My second ENT immediately scoped me (could not confirm the tumor but did see a mass of blood vessels on one side of the base of my tongue). Based on what he saw, he then suggested a needle biopsy of the enlarged neck node. He did that in his office with only mild discomfort (think getting blood drawn and they miss it the first time and gotta dig a bit - uncomfortable but definitely bearable). I got the results of the biopsy the next day - positive for SCC.

My ENT then suggested I make an appointment with the local cancer center and not an individual oncologist. His opinion was this is very treatable, curable and survivable if done correctly and he prefers a team approach that cancer centers offer over individual oncologists.

I went to the Stephenson Cancer Center in Oklahoma. My oncologist immediately scoped me again. She saw the same mass of blood vessels and said, "that's the tumor, I just need to biopsy it for confirmation and to verify it's the primary." She then set me up for a biopsy of the base of my tongue. This is alot more involved than a needle biopsy. They put you under and it's actual surgery that takes 10 days or so to fully recover from (as in pain at the biopsy site - otherwise you're good to go the next day). She also sent off parts of the biopsy for HPV testing. The biopsy showed the BOT tumor was the primary and it was HPV+.

My doc then discussed treatment options; robotic surgery on the tumor at the base of my tongue or no surgery at all, radiation of the tumor and lymph nodes, removal of lymph nodes and chemo. 

Her recommendation was; no surgery at all (tongue or nodes), radiation of tumor and nodes and chemo at the same time. The teams thought was that SCC BOT even at stage 3 or 4 is not only very treatable but very curable (80-90+% cure rate at that center). They also felt confident that surgeries can cause more harm than good and that there was no reason to cut first. They said they are extremely successful at treating first and then deciding if surgery is needed later once things have shrunk as much as they are going to.

We decided on a treatment plan; 35 daily radiations of my head in three locations, plus Cisplatin chemo. I did not want a chemo port, so instead of chemo 2 days a week I only came in 3x (once every 3 weeks and received all day long massive doses).

You'll find that many people on this board had the exact same treatment plan.

I also refused to have a PEG feeding tube installed. That decision actually was most influenced by a person who posts here (Andy13460). I followed his recovery on this board and I wished for the same and I noticed he didn't do the feeding tube and had no regrets. That is the one thing my docs really wished I would have reconsidered at the time. They claim that 80% of patients have the tube. I promised that if it became medically necessary that I would. It didn't. I credit the no feeding tube for my very quick recovery, ability to eat anything I wanted within weeks of treatment ending and the fact I have my taste buds still.

Again, just my opinion as someone who basically sailed through treatment; Cross your fingers for an HPV+ diagnosis. HPV cancers react universally better to treatment than non HPV cancers. Avoid surgery if it is an option at all. Having your tongue cut on can lead to permanent complications talking and eating and means additional discomfort and rehabilitation. Avoid neck dissection if possible. It too is yet another surgery with scars, discomfort and lifelong issues you'll have to deal with. Lymphedema just being one of them. Avoid a PEG tube if possible. PEG tubes pre-treatment are definitely an American thing. It was extremely difficult to manage my caloric intake without a tube (throat pain) but it also ensured that I continued to use my throat throughout treatment. This meant I required no rehabilitation and my muscles never forgot how to swallow. If you have access (legally or illegally) to THC (marijuana) in the form of edibles, patches or cream then consider it. I did all three (illegally and I don't care) and 100% credit it for the fact I NEVER had to take any pain medicine or opioids and not once did I throw up. I was prescribed liquid hydrocodone but that was only taken in tiny doses to calm a cough I'd occasionally get that would not otherwise subside and would cause dry heaving. Find something you can tolerate to get your calories in. It is crucial that you eat and drink. I found Boost VHC was ideal for me. 530 calories in only 8 ounces (8 swallows 4x a day). Taste terrible but it's temporary.

All that said, treatment is grueling and nothing can really prepare you for it - other than the realization it's temporary and a necessary evil with a highly likely positive outcome.

Good Luck and feel free to private message me anytime!

Great info!

I wish I had read this earlier.  My path seems identical to yours except I had the right neck dissection at the suggestion of the local ENT doc. Big mistake. He never scoped and didn’t get it all. I went to a cancer center and they discovered a lesion on the base of my tongue. I had that surgery for a biopsy a few days ago. There is a follow up appointment next week and then my treatment plan two days after that. They mentioned 7 weeks of radiation Monday through Friday and weekly chemo (cisplatin). Aside from what I read regarding burns and swallowing what else should I expect and what can I do in advance to prepare? Burn creams, mouth rinse, etc.  I do not want a feeding tube but didn’t realize the chemo port is an option. 

Finally, what did you do regarding work? I am traveling away from home for this treatment and staying for two months. Is there SS or something I may be unware of to help financially? I have great insurance but that doesn’t pay our regular bills. Nervous about all of this as the past two months has been incredibly stressful. Thanks for any input. 

Darkdancer333

Eye of the hurricane said:

Great info!

I wish I had read this earlier.  My path seems identical to yours except I had the right neck dissection at the suggestion of the local ENT doc. Big mistake. He never scoped and didn’t get it all. I went to a cancer center and they discovered a lesion on the base of my tongue. I had that surgery for a biopsy a few days ago. There is a follow up appointment next week and then my treatment plan two days after that. They mentioned 7 weeks of radiation Monday through Friday and weekly chemo (cisplatin). Aside from what I read regarding burns and swallowing what else should I expect and what can I do in advance to prepare? Burn creams, mouth rinse, etc.  I do not want a feeding tube but didn’t realize the chemo port is an option. 

Finally, what did you do regarding work? I am traveling away from home for this treatment and staying for two months. Is there SS or something I may be unware of to help financially? I have great insurance but that doesn’t pay our regular bills. Nervous about all of this as the past two months has been incredibly stressful. Thanks for any input. 

Im going to continue work

Im going to continue work until the bottom falls out. Im old school and followed OKC 's path No peg, no port. Today was first day of chemo and that went well no sickness yet !!!!!!!!

3rd day of rad and thats gone good. Had trouible with mask fitting but they cut and did what i asked. Don't take no for an answer. I can be adamant at times. 

No surgery on lymph node or tumor we attacking with 35 days rad and 7 chemo treatments. Get yourself a humidfier, biotene rinse and tablets for dry mouth, start lotion on your neck, 

buy about 5 cases boost hc 525 calorie drink.. OKC gave me a ton of good advice and my doctors agreed with everything he said. Nutrition is the key as well as mental state of mind

I chose crabo/ taxol as my chemo Doc gave that choice when I cant di Cisplatun  because hearing loss and erbitux with all that goes on i didnt want to deal with a rash.

As far as financial I live state of Washington and to get disavbility i have to grind it out. I would get information from your state i would think they can offer some type of assistance

Any other questions feel free to ask people here that been through this are the experts