CSN Login
Members Online: 9

false hope

andyw
Posts: 7
Joined: Mar 2010

we were told last week that the head and neck surgeon could easily remove the tumor and the tonsils. well, needless to say, we walked of that appointment elated.

now back at the radiation doctor he gives us a whole different picture. the air has been knocked of our sails. we need some encouragement. we are getting so worn down

Fire34
Posts: 350
Joined: Feb 2010

Andy
You were probably going to recieve radiation anyway as a precaution, even if the tumor could be removed. I had a tumor inadvertently removed and that area got more attention during radiation anyway. There is no false hope, but always hope & prayers. Best wishes
Dave

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Sorry Andy, I'm not sure what you were diagnosed with. But in my case and most others here that were diagnosed with tonsil cancer and lymph involvment. Most either have surgery, chemo and/or concurrent chemo and radiation.

Not all but a lot have at least chemo and/or chemo and concurrent chemo and radiation. From what I've read, the surgery and radiation primarily deals with the known areas, but chemo is more an overall body treatment to catch other areas or free floating cancer cells.

Sorry if you were lead to feel a false sense of hope, and I hope you have the minimal treatment that will take care of your situation long term.
John

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Andy,

I am currently going through radiation and chemo. I was diagnosed on Jan15th, with squamous cell carcinoma Stage IV. At that time the Ent did not know the "Primary source", but scheduled me for surgery the following Friday to remove the mass. Radical right neck dissection was what they called it. During the surgery, they found the primary, right tonsil, and some lymph nodes were involved. They removed both my tonsils at this time.

But my ENT was pretty clear that chemo and radiation therapy would follow surgery, and made referrals and set up my appointments for everything before I left his office. I mean surgery, radiation oncologist, chemo oncologist, Pet scan and CT scan. He said the rads and chemo would be necessary to remove any microscopic remains of the C and basically to just kill it all.

I am about halfway through treatment right now, and this site has been the biggest help to me so far. There are a lot of caring folks on this site who will help you through this. Just ask your questions and someone will answer you and help you.

Do not worry. I do not know your diagnosis but the treatment is doable and you will get through it. Hang in there and ask questions!!!!

Best
Sreve

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Hard to figure out from this post what exactly RadMan said to upset you.

If he was refuting the prospects outlined by the surgeon then he was likely outside of his purview. If he was only suggesting that you will need rads following surgery if you are to have the best possible care, then he is doing his job.

I am a survivor of head/neck cancer: 15 hour surgery followed by rads (33 of scheduled 35) and chemo (cisplatin on several day-long occasions). I WANTED the rads! Why would I want to stop short of completely eradicating any possibility of recurrance if such a choice presented itself?

Okay, I didn't WANT the rads, not the way I currently want, say, a thick steak, but I was not averse to the rads. I wanted the rads. Just not like I want a steak.

I would suggest that you follow the lead of others who have responded to your post and maintain both a positive attitude and an aggressive one. If you are disappointed now, if your sails seem lacking in wind already, why, then, your voyage is likely to be even more difficult than it has to be, and to be honest it is not likely to be a sail around the local pond in the best of circumstances.

If you have mistaken the positive attitudes and aggressive stances and hopeful prospects and humorous outlooks of the people in this board and elsewhere in CSN for a walk in the park, you have been mistaken, andy, with all due respect. Anyone that has been given a cancer diagnosis has been through quite a bit, even if they were never cut on, even if they never had to undergo radiation and/or chemotherapy treatment.

It is no walk in the park and behind every gentle or insistent encouragement you receive herein is likely a courageous story untold.

Nonetheless, clearly, it is doable.

Hope and humor, Andy, hope and humor.

Take care,

Joe

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Sorry your news was not so good as you might have expected it to be, but what ever the out come there is always hope. I have survived head & Neck cancer three times now and I am still going strong, so no matter how bad the report just hang in there listen to all the options and don’t be afraid to ask your doctors questions. Life after Cancer has it little ups and downs but it is still great just to be alive.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

FWIW, I had my right tonsil and tumor removed, but there was never any doubt that I would need further treatment. I had Stage III SCC with one lymph node involved, and I had radiation (30 sessions) and two rounds of chemo (Cisplatin). The chemo was optional, but I was told my chances would be something like 20 percent better if I had it, so I did.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Andy- I'm not tonsil, but am NPC. The only Ops I had was a surgical biopsy on the larger top tumor on the left side of my neck, then placements of the PEG and Port. My Drs. did not remove either of the two tumors, Andy- instead, they let the Chemo and rads kill/destroy the tumors. Hopefully, that's what in play with you. IF you have doubts about your Dr's. diagnosis and treatment, I would urge you to seek another opinion from a highly reputable Dr. and Cancer Center in your general area.

kcass

train-nut
Posts: 101
Joined: Jun 2008

Andy,

My RO might be related to yours. He was easily the least optimistic member of my entire care team. He once said: "If it's at all suspicious and you can't prove it's benign then I'm treating it as a malignancy." They live in a very difficult world and sometimes it colors their outlook. Keep your chin up; you'll make it same as so many on this board have. Best of health to you, Rich

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Andy,

i was diagnosed with a tumor on the Left Tonsil. My ENT guy diagnosed me and said straight up the the standard treatment would be to irradiate it to shrink it, and then see how that went. Once the PET/CT scans were done the next day, I sat around a table with the ENT Doc, Rad Doctor and Chemical Ali (My Chemo Doc). We talked through the options and I asked if they could cut it out first. (I figure why let the ***** tumor stay in my body giving it even the slightest chance to cause havoc) They all agreed.

The next question was if I needed Chemo as radiation was a given to clean up an missed bits. Chemical Ali was convinced I needed Target Therapy as well as the radiation (Erbitux) because in the Scan 2 lymph nodes lit up though indicating inflammation not mets. Meanwhile the other two Doctors thought not. What do you do ?? I ended up accepting the full monty.

There is no easy choice and you often wonder about the advice and way it's given. I think you need to feel comfortable with your doctor(s) and then trust them to know what's best. That does NOT mean let your guard down as you need to question everything and make sure you understand what is going including medications, treatment regime, and potential side effects and recovery. All of us here have been through it and glad to say most of us are doing OK once through the mill.

Standard advice here may be to seek a second opinion. That should at least give you more information to help you make these difficult and very important decisions.

Hope this snippet help in someway. Keep us posted.

Regds
Scambuster

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Thanks for making me laugh out loud, Scambuster. Chemical Ali. What a hoot!
My chemo doc is an Indian woman (Indian as in from India, not American Indian), and it almost makes me wish I'd had a male doc so I could have called him Chemical Ali.
Maybe next time.
Not!

--Jim in Delaware

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Hi andyw: I can relate to how you are feeling. To say being diagnosed with cancer is an emotional roller coaster ride is an understatement of MAJOR proportions! When I first realized I had a problem on my tongue (in 2001), my dentist sent me to an oral surgeon for a biopsy. The oral surgeon told me he was 99.9% sure I did NOT have cancer. Much to my dismay, he called me at work 4 days later to say the biopsy results were in and I did indeed have cancer. Bummer!

Like most everyone here; we've all been through a lot of ups and downs while going through the treatment and recovery process. I am not a pessimistic person by nature but this battle had knocked me down several times. But I refuse to give up and keep getting back up and fighting back. Even when sometimes I've felt like giving up. I owe that to myself and my family and friends.

I wish I could tell you (and myself and everyone else on this board) that it's going to be OK. But no one has any guarantees in life so I pray that we all can make peace with our prognosis, maintain our physical and mental health, adjust fire when necessary and just enjoy what life we have left on this earth.

Warm wishes and hugs to you! Kathy

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Truly, Kathy- words well stated in the overview.

Sorry to hear of how your battle started. Musta been quite a jolt, after what the oral surgeon had initially told you. With me, two tumors showed their ugly presences in a short time, and I figured it was likely cancer. Biopsys were nothing more than confirmation for me. The surprise was that they couldn't find the C in any place other than the tumors- which may or may not have been good news.

By my way of thinking, and based on experience- there is a greater truth that holds with everyone: one must only focus on the positive, albeit clinging to said positives. There is absolutely nothing to be gained by b------- and moaning about the negatives, and how unfair it is, etc. Hey, nobody wants to be told they have C. But that's the cards that've been dealt to us who have/had the C. The best path to take is so very simple- "okay, I've got the C, and now I must deal with it as best I can. And I know it is very possible I can win this battle. I can and will survive this. Come what may, I will survive." To dwell on the negative is to seek self-pity. Bottom-line. And it truly does not serve a positive purpose, other than those negatives being of one's foe in the battle, and recognition of those negatives is correct. However, it is the thinking that those negatives can get the best of one- that is not correct, and of the weakness whose core is self-pity. We all know how bad it can get with the treatment side-effects, and where it takes us; however, we all know our type of C can be survived. That is why we are here- for Mick and Deb and Steve, etc., etc.

We, here, are C-positives, and have either fought and won the battle, or are fighting it at whatever stage of the battle. That battle begins when we know it is C that we have, of course. And for us, the only way the C wins is if we let it. We don't have stage-4 lung. Yes, Kathy, the battle knocks one down several times, and the only appropriate way to deal with it is to keep fighting, and keep fighting, and to never give up. Yes, Kathy. 16+-months is where I am at, and 11+-months, post-treatment. To Andy, and all-

Believe

kcass

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network