Just received the news, cancer of the tongue, Phase II, surgery set for next week on the tongue and removal of nodes on the left side. If anyone can tell me what to expect it would be greatly appreciated.

Hi cosmo and welcome to ocf.

perhaps you cold give us a little more detail,then it will be easier to tell you what you need to know.
What part of your tongue is affected,what sort of surgery are you having on your tongue? are you having a bilateral neck dissection or just one side? are you going to have radiotherapy or chemo?

regards liz

Cosmo,

Ditto on getting us more details but without that knowledge I still would advocate getting a second or third opinion especially from a Comprehensive Cancer Center before I would go under the knife or begin any treatment.

i'm a bit confused here david.If early detection and treatment is the crux of success how does waiting to get several opinions work?I am not being confrontational just think thats a mixed message.

liz

Hey Liz,

I think I can help with this...if a biopsy has been done and even better, if there are PT/CT scans that can be looked at, we can sometimes be seen at the CCC's within a week. I know when I called, they were able to see Bill within about 5 days. It does depend on the individual specialists, but with a little tenacity on the patient's or caregiver's part, you can be seen by a number of specialists within a couple of weeks here in the US. I just stayed on the phone until I got the appts we needed.

Deb

Also, if the only physician the patient has seen is an ENT surgeon, then surgery will likely be the first -- and perhaps only -- recommendation the patient hears.

My husband's excisional biopsy of a leukoplakia (in which the cancer was discovered and, thank goodness, totally removed) was done by a very good ENT, but he also removes tonsils, treats sleep apnea and such. When my husband heard that cancer had been found, I insisted he get an appointment at a comprehensive cancer center where they see this every day and where -- if needed -- specialists from a variety of fields would work together to come up with a treatment plan.

-- Leslie

Oh my what a complicated system.robin was seen by a head and neck surgeon,and after surgery he was passed on to the oncologist in the cancer centre adjoining the hospital.A multi diciplinary team decided on the best course of treatment after his initial appointment, the biopsy and scans.I guess we were lucky to have everything under one roof,but we dont get to choose doctors or where we are treated.its to do with geographical location and the health authorities.If we had been in yorkshire he would have had the same facilities in leeds as he had in guildford.From first appointment he was seen scanned biopsied had a partial glossectomy and had a bilateral neck dissection(two seperate surgeries) in four weeks and that was over the christmas holidays as well.

I got the impression that cosmo had been seen and biopsied and surgery arranged already,so thats why i was asking why david thought he should get another opinion and delay the start of treatment.

thanks for the input

love liz

Liz,
Yes, from one point of view complicated and definitely not perfect, but from another point of view...choices and more than one viewpoint. The CCC's have a multidiciplinary approach but we can go anywhere and can get more than one CCC's recommendation along with the recommendations from our local specialists. Makes the stress factor worse but gives us more to work with. Also, costly at times.

Deb

Liz,

I conferred with 5 different cancer doctors before I picked one to treat me and I am very glad I waited to see Moffitt before committing. All of these visits consumed less than 1 1/2 months time and never was I told that putting off treatment for 2 months was detrimental to my outcome. In fact I was encouraged to seek other opinions.

If I had stopped short of Moffitt I would have had a RND and may not have gotten IMRT and while my apparent cure may have been the same, I would probably have many more post Tx issues to deal with. I read about so many posters that have 1 or 2 ND's based solely on the advice of the first doctor they see and I just wonder if they could have avoided that surgery by getting in to see a CCC and that's why I encourage addition opinions.

Cosmo,

As you can see by my signature below, I had a partial glossectomy and a neck dissection. I was treated at a Comprehensive Cancer Center and was seen by a surgeon and a radiation oncologist before the final treatment plan was decided upon. There are many factors which should go into making a decision about how to proceed with a treatment plan.

The advice given above to get an opinion at a CCC is good advice. I assume that you meant to say that you are a Stage II not Phase II. In order for others to better answer your questions, it would be a good idea to fill in your signature so everyone can see where you are coming from. Remember that none of us are treating oncologists and that we can only answer your questions and give you our opinions based upon our experiences and in my case (and Dr. Mike's) some dental input, as we are dentists.

You should read the first forum for new posters so you will learn how to get the most from this forum.

I wish you luck with your treatment and please feel free to email me if you want to have a personal discussion.

Jerry

[quote=wilckdds]Cosmo,

As you can see by my signature below, I had a partial glossectomy and a neck dissection. I was treated at a Comprehensive Cancer Center and was seen by a surgeon and a radiation oncologist before the final treatment plan was decided upon. There are many factors which should go into making a decision about how to proceed with a treatment plan.

The advice given above to get an opinion at a CCC is good advice. I assume that you meant to say that you are a Stage II not Phase II. In order for others to better answer your questions, it would be a good idea to fill in your signature so everyone can see where you are coming from. Remember that none of us are treating oncologists and that we can only answer your questions and give you our opinions based upon our experiences and in my case (and Dr. Mike's) some dental input, as we are dentists.

You should read the first forum for new posters so you will learn how to get the most from this forum.

I wish you luck with your treatment and please feel free to email me if you want to have a personal discussion.

Jerry

[/quote]

Jerry,

To fill in the blanks left:
Yes I am stage two and I've been to all of the above CCC, oncologist, etc...

I am ready to proceed with surgery and I just want to know what to expect. It seems you have been where I am headed and I just wanted to know what to expect as far as recovery. I've heard that my voice is going to change among other things and I just want to know from someone who has been through this what should I expect.

Thank you in advance.

Cosmo,

I have not run into any two people here that have had the exact treatment plans or the same reactions to similar treatments. So bear this in mind.

Briefly, my experience was the removal of a 2 centimeter radius, semicircular area of the lateral border of my tongue and the removal of 30 (negative) lymphnodes from my neck. I was in the hospital for 4 days and ate no solid foods for 10 days. I went through both physical and speech therapy for several months and was able to return to work in about 3 1/2 weeks with a limited patient load. It was decide that I didn't need chemo or radiation. There are only a few of us here that have not had treatment beyond surgery. So far, so good.

That is the short version. I am going to email you a copy of an article that I wrote for a dental magazine that is due out any day now, which gives a more detailed rundown of my story.

I hope this helps and if there is anything else I or anyone else can do you for you, please let us know.

Jerry

Cosmo,
My 1st surgery removed a small portion of tongue and a few lymph nodes on right side. ENT was overcaustious and 2 weeks later needed a little more of tongue removed. 4 months later it was back. This time I got to a Cancer Care Center.A month later(day before Thanksgiving) they removed most of the tongue and put in a flap which was made from left forearm. (A flap replaces the area they removed. It looks like your tongue but doesn't move,the remainder of real tongue has to work harder to move the whole thing. It has no taste buds and mine doesn't have feeling.) Also removed all lymph nodes from right neck, all negative. Had chemo and radiation. One positive node from left neck removed. After the surgery at Fox Chase Cancer Center I couldn't talk or eat for a few days. Talking came back pretty quick - can't shut me up for too long - but eating took longer. I had speech therapy for awhile which not only helped with speaking but with swallowing and tongue exercises. Started on shakes,pureed foods and soft food. Was getting the hang of eating then radiation messed that up and I had to use a Peg feeding tube for a few months. Now I'm drinking shakes, smoothies and can eat soft veggies, cheerios, potato salad and a few other things. Very surprisingly, I didn't lose too much taste. I thought between losing so many taste buds from tongue missing and radiation killing some that I wouldn't taste anything, but I can taste just about everything. The neck dissection to remove lymph nodes wasn't so bad for me either. The surgeon was great and the scar kind of blends in with the folds of the neck. I have full movement with a little numbness. If you have movement problems you can get physical therapy to help. As wilckdds(Jerry) said none of have the exact same responses to treatment but I hope this helped a little. Keep us posted on when surgery is and how things are going.

Karen,

Were you treated at the main Hospital in Philly or one of the satelite locations? My scar is almost impossible to see also.....probably the same surgeon.

Cosmo,

Glad we got to speak tonight. I sent you my cell phone number. Don't hesitate to call.

Good luck Tuesday.

Jerry

Hi Jerry,
Yes, I was at the main FCCC in Philly. Great place !!!

Karen

Cosmo, from your location in Va. , I would guess you have been to a Comprehensive Cancer Center for the diagnosis. Most of us here have been thru the procedure that you will face. Let us know what the Dr has planned when he does your surgery. I bet you will get some good answers on what you can expect then.Got ya in the prayers.

Hey Cosmo where are you in VA?

Hi Cosmo:

I am sorry to hear about your news. I bet you are overwhelmed I know I was. It is so much to take in at once. I have however found a lot of helpful insite here talking to these very supportive people. I have yet to have any treatment and am still waiting further tests.

Although I understand the importance of a second opinion. In this area there is only one hospitial that specializes in head and neck cancers. All the doctors are under one roof and they confer with each other. For me to get a second opion would involve going back to my oral surgeon possibly back to an urgent care clinic as I have no family doctor and the wait would be substantially longer and also there would be further travel involved. I feel my hands are tied if I want this issue dealt with post haste. At this time I still feel it is taking too long.

I know you have come to the right place to find information

Take care no matter where the location we are all in this together!!!!

Dianne