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Got firm diagnosis, has anyone had similar diagnosis?

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi all,

This is my 2nd try at writing this, went to preview the 1st one and it deleted it somehow :-(

Roger was preliminarilly diagnosed with base of tongue cancer on April 28th. A Dr noted a tumor on base of tongue back in records we obtained from Oct. 2006, but never even told us it was there, so here we are 3.5 years later with stage 4A,T-2, N2C squamous cell (type 3) base of tongue cancer. The ENT Dr debulked the tumor (3.4 cm,too large to remove)on May 19. Radiation and Chemo DRs want to do both at same time. They are not removing tumor or lymph nodes. He goes to dentist May 24, fitted for mask May 25 and then there is a week where the mask has to be made, before threatment can begin. Seems like an eternity since we found out on April 28th, is this normal?

We know that this is not the best diagnosis, but would like to hear from others if they have had similar diagnosis and what their treatment was or is?

He is very positive, says he wants to join a cancer survivor group right now because he will be a survivor.

Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I know it seems like a long period of time and I agree, once you realize you have cancer, you want to start treating it as soon as possible.

I know when I was diagnosed January 2nd, 2009 it was a total shock. After fnally accepting the fact that I had cancer, I wanted to start treatment. I had my tonsils removed on the 5th of January (they were the primary). I also had a lymphnode affected (secondary). They chose not to remove that as the location and neck dissection were more invasive. Their decision was to wait and see the results from the chemo and concurrent chemo/rads. Good decision as the tumor dissolve away completely.

Anyways between that, a bout with diverticulitus and such, it was around mid February before I finally started any type of actual treatment. My mask was made early February, but I didn't actually start the concurrent chemo/rads until nine weeks or so later after finishing the initial nine weeks of chemo.

I finished everything up late June 2009. To date all scans have been clear and no signs of cancer.

I was STG III Tonsil SCC HPV+ diagnosed.

John

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi John,
Thanks that eases my mind somewhat. You are right, you want treatment to start yesterday! I am happy for you that you are clear, and I wish for cancer free years ahead of you.
Thanks for responding :-)
Lynette

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

Lynette, your husband has a very good attitude which is critical for him now. You will both need to stay positive. I did't have the same type of cancer so I'm not sure but you will hear from many with the same type. This is a good place to get info from people who have survived the same cancer or are being treated for it. Plus you will make a lot of friends here who will become part of your support team! There are many people here and everyone is willing to help in anyway they can. You will also hear from other caregivers like yourself. This is just a great place to be since we all have had the awful diagnosis of Cancer! Welcome, but I'm sorry that you and your husband have to go thru this.
I wish you and your husband the best.
God Bless,
Debbie

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi Debbie,

He is used to trying to solve all the worlds problems and looking at things negatively, so I am really happy to see him tsking this kind of stand right now. I expect that there may be times that we will both falter, but as you stated, we will have this venue to pull up our bootstraps and get us back on track.

Thank you for the well wishes, I know that they will be our lifeline over the next few months,
God Bless you also,
Lynette

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Lynette,

My husband's diagnosis sounds very similar to Roger's. He was diagnosed with stage 3 base of the tongue cancer (HPV positive) in March. It seemed to take forever to start treatment. He didn't have any surgery and started radiation and chemo the last week in April. He goes to radiation 5 days a week and chemo (cisplatin and erbitux) 1 day a week. They told us it was important to start chemo and radiation on the same day. Radiation took the longest to get started since they needed to make the mask, and then he went though a simulation to make sure that everything was working correctly. He will start his 4th of his 7 weeks of treatment tomorrow. He had a PEG tube put in 2 weeks before treatment and that has been a lifesaver. Keep up the positive attitude!

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi Lena,

Thanks for the info, it does sound a lot like what we have been told. The Radiation oncologist was funny as she was trying to say he had enough meat on his bones to possibly forego the feeding tube. She told him that he had enough bulk, to give it a try without the tube, which seems to be a fear for him.

I hope you husband is doing well.
Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Hi Lynette,

I was generously nourished also and the feeding tube was mentioned in my initial treatment plan. But only as a resort to not being able to take in any calories. That option was always out there and on the table.

But unlike many here, I didn't have a PEG inserted as the medical professionals on my team didn't feel it was necessary. I lost maybe a total of 40 or 45# during the entire process.

I'm 6' and started at 275# so I went down to about 235#. At the worse there was a period of about 4 weeks into the concurrent chemo/radiation and lasting until 3 - 4 weeks posts rads that I didn't take much in. I mainly survived off of Ensure Plus, water and a few soft foods like the DelMonte jarred peaches, cream of wheat, mac-n-cheese.

My doctors were continually monitoring me and my weight and at no time did they feel that I was in jeaporady of losing too much weight, LOL....so for once it was a good thing to be a little heavy.

The Ensure Plus has a bout 350 calories per can if I remember correctly. So I mainly used those several times a day as my main source of calorie intake. I liked the Strawberry (they come in several flavors), but I could barely taste anything at the time anyways. I mean during that time even water tasted like sweat, kinda salty saline taste.

Anyways, I'm almost a year out, everything is looking good, and I have back around 80% or so of my taste and have regained nearly the same for saliva, other than night which is a bit dry still....

John

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Well this is certainly not the weight loss diet that Roger wanted, but thankfully he also has a fair amount he can spare. He is also 6.1 and about 245 lbs, so he is truly hoping to avoid the PEG. I read him your's as well as all the other responses here and it has given him much needed encouragement after todays fiasco. I will be hitting the phones again tomorrow, trying to locate an Oral surgeon with a heart and not just pockets to fill with cash.

Lyn

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

Lyn, good luck. It is amazing that not only do we have to fight cancer but some have to fight getting medical care for one reason or another!! Unbelievable!! I'll keep you in my prayers.
God Bless,
Debbie

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

Even though this seems like an eternity, it really isn't. I had my biopsy on 9/10 with the results the following week. Then off to see the ENT Surgeon who did a scope to see how large the tumor was and to see if it had gotten as far as my vocal chords. Luckily it hadn't. He wanted to put my case before the tumor board that week and then off to see the Rad onc and Medical onc the following Monday. They were both in agreement that I should have simultaneous chemo once a week and radiation 5x a week. They wanted me on a trial that would give me Rads 2x a day and chemo for 4 days on 3 weeks off. But based upon distance to the cancer center and people's schedules that was not realistic without me moving closer to the center.

Then I needed to go to the dentist, oral surgeon for teeth removal, and then healing before they would start anything. I didn't start treatment until 11/1. Rads lasted through 12/31 and chemo finished the middle of the following March.

Then 6 weeks to gain some weight back and build up my strength to prepare for surgery. Surgery was 5/1 and what they ended up doing wasn't as extensive as they thought they were going to have to do because the radiation and chemo did the trick. All they found was scar tissue instead of live cells.

Trust the doctors as they have your husband's best interests in mind doing the treatment with the plan they have in place.

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

because of the way the disease progresses most of us aren't diagnosed until it has spread to the lymph nodes. I find the fact that a doctor of medicine found the tumor in 2006 and did nothing? Am I reading that right? There is much preliminary stuff to do prior to treatment and really is for the most part in your best interest. Please keep asking questions and the folks here are the best.

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hello Ratface,

The sad thing about this diagnosis was the fact that another ENT had seen this tumor on his tongue 3.5 years ago, but never said anything to us. The primary also had the report in his records and also never checked the tongue for any followup. The only way we found out that it was there was because we went to the hospital where the ENT did his procedure and picked up the records. Upon reading them, we were stunned to see that this could have been taken care of when it was 1-1.5 cm and could have been surgically removed. It has made us very wary of Doctors but it has also made us demand copies of everything that is being done.

I do believe that he is in the best hands right now, and I already know that I am in the right place here for the support and answers that I will need over the next year or so. All of you are wonderful.
Lynette

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hello Sash,

Wow, that must have seemed like an eternity, but it sounds like they led you down the right path and succeeded in eradicating the cancer. I guess I am leary of trusting the Drs when we would not have been in this spot if the ENT that treated him 3.5 years ago would have told us what he had found and followed up on it. I do feel now, that we have the best working on him. We have doctors from Watson clinic/moffitt cancer care and research center in Lakeland, Fl and they appear to be cutting edge.

Thanks for your input and I wish you many healthy years ahead :-)

Lynette

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hi Lynette,
I am relatively new here, in that my partner, Mark, was diagnosed with SCC of the left tonsil on April 13th. On May 3rd he had the first of 3 surgeries. On Wednesday he will be 2 weeks post radical neck dissection where they took all his lymph nodes on the left side of his neck. His surgery to remove the tonsil was robotic. We are in the Philadelphia area and there is a Head and Neck surgeon here who does these surgeries with a robot so angles and cuts can be achieved that the human hands cannot do.
Today he is being fitted with his mask for radiation, sees the dentist tomorrow and medical oncolgist on Thursday all in prep for chemo/rad. (also at the same time - pretty standard)
I find things can't happen soon enough and then things happen quickly and then there is where time is standing still. Anxiety is such a normal state, that the things that I think best combats it are a positive outlook, which you can get from folks on these boards, being actively involved with appointments, care, and information gathering, and loving support around both of you. Stay healthy. I have been a little under the weather the past days and it affects everything. Take care of yourself!!!
Best of luck to both of you...you are not alone,
Kim

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Lynette right now isn't the time to get litigious but you should certainly contemplate it after you get to a stable point in the treatment. What happened 3 1/2 years ago shouldn't happen. They were clearly wrong and you have documentation. I am not an advocate of sueing doctors but my God they were wrong and risked his life without hesitation. This cancer although survivable results in fewer than 30% of us returning to work because there are complications and issues years after treatment. Right now you have your priorities but it's burning me up that they did that. Don't let them get away with it less they do it to another unsuspecting poor ***** among us. I get copies of everything and almost always get little resistance.

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

Well said, Rat, and I definitely agree. Nobody can afford to play with cancer. I think he should be held accountable for his noncaring attitude!
God bless,
Debbie

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi Ratface, (How did you come up with a name like that ) :-)

You are right that something needs to be done and yes, I have the documentation to produce and pursue when we get on a more even keel here. What is even worse, is that he mentions it in an October 2006 report and then in a November 2006 follow up report, he states that he did an oral cavity inspection and everything "including the tonge was normal! I think he must have been taking drugs he was supposed to prescribe for someone else !!!

We went back to our previous County and spent the day collecting Roger's records from the ENT, Primary care, Heart, hospital and lab, so there is no way that he had time to misplace or otherwise alter any documents. I am sure that he is unaware that we have all the pieces to the puzzle.

I am not one to sue either, but him and the primary Dr put my husbands life in danger and that warrants the wrath of an angry wife!!!

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hello Kim,

I see that a lot of the people on here have had surgery, Our Drs didn't consider surgery for him. I am not sure why not. I do know that the tumor on the tongue was too large at 3.4 cm to remove, without loosing the tongue! I am not sure why they didn't consider surgery for the several lymph nodes that it has invaded, but maybe they are hoping that the chemo and rad will eliminate the danger of leaving them in.

You are certainly right about this web site, It has made me feel sane and given me a strength that I don't think I would have had without all my new found friends :-)
I wish you and Mark a speedy road to recovery.
Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Lynette,

On mine Dr. Jean removed my tonsils, but they decided to wait and see the effects of the chemo and concurrent chemo/radiation on the tumor that I had in addition to the tonsils.

In my case it was a good call, by the third full round of chemo, the tumor had dissolved. All of the scans have been clean to date, so at this point I'm in a maintenance mode and no additional surgery is planned.

John

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

The first ENT was treating me for a sinus infection and then thought it was an allergic reaction to the meds for that. Amazing how an ENT can misdiagnoses a stage 4 tumor thinking it is a either a sinus infection or an allergic reaction to medication.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Lynette....we need to get together.

Posted below, sorry for the double posting.

John

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

I have a diffrent type cancer NPC but I do want to say Hi and welcome you here to CSN.

All the best to you.

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Thank you for the kind words and the welcome. This website and all of you will likely be my lifeline at times, so I am very happy that I found it.

Here's to the dream of a cancer free world in our lifetime :-)
Lynette

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Hi,

This sounds like the diagnosis my dad got in March. He is almost half way through is treatment and doing great He is eating better now then he did before because of the pain in his tongue (that pain is gone and he now has side effects from rads). He is also drinking the ensure and the boost for extra nutrtion. It tool about 2 months for him to get started. I wish you both all the best and please read all you can on this site it has been a blessing for our family.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I'd have to say I'm pretty close to what you have going. (other than the delay) A biopsy of a swollen lymph node showed squamous cell cancer. This was May 2009. I was refered to a cancer ENT who scheduled an exploratory surgery right away. He took lots of biopsies during the surgery, looked in my lungs, down my esophagus and all in my throat and nasal area to isolate the primary. 3 cm. lesion of the base of my tongue. (stage 4 with mets to one lymph) He was going to take my tonsils during this surgery but felt safe in leaving them. This was on a Wednesday. On Friday he took the results before the cancer board and they decided on a course of treatment. On Saturday I had a PEG and medi-port installed. On Monday I started Chemo and got a mask fitted for the rads. The next day started rads. Not sure why it would take a week to make a mask. They soak a big sheet of some heat sensitive material in hot water and lock you down and massage it until it conforms to your face and it stiffens. Then they put some landmarks on it and run a CT scan so they can "map" your anatomy and the radiologist programs your treatment. Next day went to a different room and when they were sure I was in the same position as the day before started my rad treatment. 33 rads and 3 weeks of chemo with 2 weeks in between. Finished treatment in October. PEG out in November and just had the port out this morning. Sounds like your husband is going to take this head on. Only way as far as I'm concerned. MY ENT was no nonsense guy, told my wife and I how it was going to be with no sugar coating. Explained our options and we made a decision. (Offered radical neck disection or chemo/rads. Said outcome would be the same whichever. We opted no cutting) This treatment is tough but doable. I believe the multi Doctor treatment with input from all is best. Also, make sure rads are done somewhere where it is done often vs. small town local radiologist that maybe does it couple times a year. Good luck and please keep us all posted. The people here are the best!

Mike

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Lynette....we need to get together.

I live in Lakeland and that is where I had/have all of my treatments. I have Dr. Jean as my ENT, Dr. Mulaparthi for the Chemo, and Dr. Barrett was for the Radiology Plan.... The nurses and doctors are awesome at the Center. I have a few very special nurses that are totally excellent in my opinion.

John

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Hi John,

Roger also had Dr Jean and we adore him. He has Dr Fred Schreiber as his chemo onc and Dr Sandra Sha as his rad onc. They have all been wonderful so far, Dr Schreiber reminds me of a big teddy bear :-). My e-mail is illoozions@aol.com write me and I will give you our address, We live on the southside off 540A.

Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I actually go in for my routine 6 - 8 week exam with Dr. Jean Wednesday. Not sure if you have started any treatments as of yet, but the nurses are awesome, Lane and Jerry are great.

I live on the Southside as well, DeerBrook to be more precise..

Publix has their brand of Ensure & Ensure Plus that has all of the same calorie, mineral and vitamin values as the brand name and it's a few dollars less expensive.

I know it seems somewhat pricey, but the way I looked at it, was I wasn't spending any additional money on real food, so in those terms it wasn't really that bad.

I mean even if you drank a six pack a day, that's only 6 - 8 dollars.

I'll shoot you an email tomorrow.

John

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Aha, you got me on that one. We actually may be spending less, my mind hasn't quite wrapped around all of this yet and I hadn't thought it through. We live in Sunset Vista, 1/2 mile from US 98 s. I know where Deerbrooke is, so your not too far. My husband said we should meet you. WE moved from Spring Hill, fl where he had many friends his age and retired, to here where most are younger and working, so he has been very lonely here. It would be good for him to have someone to chatter with :-)

Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Lynette,

I am 56 and still working (Lakeland Electric - City of Lakeland), I've been there 20+ years.

Hondo (and his wife) and I met last year when he was here (Tampa) for work related business. Really nice visit and we had a great meal together over in Tampa (Shells Restaurant on Dale Mabry), I'm sure you have probably heard of Shells.

Anyways, I better get to bed, 6AM comes pretty early. I seem to dose off about 9ish and wake up for a few hours around mid-night...part of the gift that keeps on giving I guess.

Talk to you tomorrow.
John

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

I am going to stock up on "Boost and "ensure" when I see it on sale. It is unbelievable that they cost so much. I will say a prayer for your dad, as well as all the others that frequent this website. Thank you for writng and for your kind thoughts,
Lynette

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Sometimes you can also find $2.00 OFF coupons, but usually the Publix brand was still always less expensive.

I preferred the Strawberry, it had a hint of taste for me, but it was mainly just for calorie intake anyways. I liked the DelMonte Jarred Peaches at Publix also, not sure why but I ate a lot of those, and canned spinach, LOL....

JG

illoozions's picture
illoozions
Posts: 31
Joined: May 2010

Good morning,

Roger loves peaches and does eat spinach from time to time. He will be having all of his teeth out tomorrow, and is worried that he won't be able to eat anything. I told him that his tongue can pulverize a lot of those kind of foods, and he will be surprised at what he will be able to mangle into a liquid type food, when he wants to eat it bad enough. I can understand the strawberry being the strongest of the flavors as it has the tartness that vanilla and chocolate don't.

Lyn

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

The tastes aren't that strong during some periods, or actually pretty non-exsistant....

But I could taste (a little) both of those pretty much completely through treatment when even water tasted like sweat....

He's an "Old Salt", he's been around for a while and I'm sure can handle all of this upcoming therapy....

JG

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