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Decision for radiation

seesaw
Posts: 15
Joined: Sep 2010

Hello all:

I am hoping for some advice from someone who has "been there done that."
Last June I was diagnosed with Low grade, Stage I mucoepidermoid carcinoma in the minor salivary glands on the roof of my mouth. I had surgery on August 12, with clear margins. My surgeon thought I would not need radiation; however my radiation oncologist decided that I should have radiation to the cancer site and to the lymph nodes in the neck for preventative reasons in case there were microscopic cells that might have been left behind.
I decided to have a second opinion and went to Chicago to a University Hospital. After looking at my records, scans, and path reports, the oncologist there said that to do radiation for a tumor that was low grade with clear margins would be "outrageous."
He suggested monthly visits to my surgeon for observation would be adequate, and if the cancer returned, they would then do radiation.
Right now I feel lucky but I really don't know what to do. I have two totally opposite opinions and though I would rather not have to do radiation, I also was told that if the cancer returns, it is always worse than the first time to treat, and he would rather prevent it from recurring by doing preventative radiation.
Also, it has been 8 weeks since surgerly, and the oncologist mentioned that the radiation should be started within 6 weeks of surgery, or it is not really effective. Anyone know about this? I am running out of time for making a decision on this as he wants to start radiation in the next 2 days.

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

Hi See Saw,

Firstly, you have 2 of 3 Drs saying Rads are NOT needed. Also I can not understand why you would be being pushed so hard to start - as there is no expiry date on when you start rads after surgery that I have heard of. While I certainbly can not be sure, but it does stink a bit like the Rads Doctor wants you on his billings list.

I just had dinner with friend who had a tumor removed from his jaw, had a bone graft etc. they got clear margins. He had no rads, no chemo. That was 8 years ago. He is doing just fine.

You can maybe seek a 3rd opinion. As you know Rads does do some collateral damage, sometimes long lasting, so I would tell them to hold off and give yourself more time on this. '2 days or bust' really doesn't sound right. I was pushed into Chemo in a similar way, and do feel it wasn't necessary - but in the heat, I went with it.

We are not Doctors here SS, but we have all been through a wide range of experience so I hope someone else chimes in with their view but as said, If I were in your shoes, I would take my time with this decision.

Keep us briefed.

Scam

seesaw
Posts: 15
Joined: Sep 2010

Hi Scambuster.....Thank you for your help. I have called local radiation oncologist and asked for more time to think about this. I took the day off work so that I could research and to get on this website and think. As you said, none of us are doctors; but I like the fact that the people here are all experiencing cancer and cancer related questions and I do value everyone's input. I am seriously thinking about that 3rd opinion. I have HMO insurance, so my 3rd opinion will be at my own expense, but when weighing the effects of radiation vs. recurrence, I really want to make sure any decision is the right decision for me. I am only 58 years old with 3 daughters and 2 grandbabes, so I have alot more living to do. Thanks again!

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

seesaw, i do not know where you went in chicago land but i have another option at the unversity of loyola, Dr. Barrowdale. He has been my doctor for 9 years and been on my team of doctors for almost 15 years. he was mentored by one of the world best in head and neck cancer Dr. Ron Haymaker( passed from cancer). The added help from him is if he does not know he will call the people he knows while sit with him.

I believe you must have a good feeling of what your doctors offer. most here at CSN are not doctors so your question is hard for me to answer for you. I can ask this thought for you. Do you want to live life with the thought you have not done everything you can to keep this ugly illness from coming back?

Good Luck with you decision

John

seesaw
Posts: 15
Joined: Sep 2010

Actually my second opinion was at Loyola University Hospital with Dr. Bahman Emami. He was very straightforward and confident in his opinion. He said his 2 surgeons at the tumor board meeting discussed my case and they agreed collectively that I should NOT have radiation. The fact that I never want to have this come back is the reason I am having such a hard time deciding on further treatment. I keep going back and forth with my decision. Thanks for the information.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Great Doctor !!!

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

There are some very high rated Hospitals in Chicago. I would trust a doctor from a top rated hospital rather then another hospital.

seesaw
Posts: 15
Joined: Sep 2010

I went to Loyola, but am thinking about a 3rd opinion at Chicago University with a Dr. Haraf. My insurance (HMO) would only pay for Loyola but when you are talking about your life, I think its worth the cost. Thanks for your response!

Fire34
Posts: 352
Joined: Feb 2010

See
He is top notch he was my rad onc. He in my opinion is the greatest. none of my oncologists at U of Chicago were pushy. I am biased of course as I dont think I could have had any better care anywhere.
I was part of a clinical trial there, all the doctors and nurses were just great. I dont believe Dr. Haraf will force you to do anyhting you dont want to. He tells you like it is.
His first look at my chart on my consult he told me "when I get done with you your going to feel like a piece of____"
I had stage IVa of my right lymp nodes with unknown primary. I am ten months out NED.
Best wishes & Prayers on whichever decision you make
Dave

seesaw
Posts: 15
Joined: Sep 2010

Thanks Dave, I appreciate the positive information, prayers, and well wishes. Will keep in touch with my decision. My prayer right now is that I make the right decision for me.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

If there is any way to not undergo radiation then don't do it. 13 years ago I had chemo and radiation for tonsil cancer. The loss of saliva was bad but in the last two years I have encountered and am now being treated for side effects which I did not know were a possibility. I don't know if I would have made the same decision back then had I known because I was like everyone else, I heard "CANCER" and just did whatever the doctors recommended. In the last six months (as a direct result of the radiation) I have had to have a peg inserted because I was unable to swallow and was losing too much weight. My chin became numb (like a shot of Novocain) and I have a tightness in my right neck muscle. I am being treated at the University Of Alabama and last week my ENT told me I have scar tissue affecting the trigeminal nerve in my face. I have a MRI scheduled on Thursday to ensure it is "only" scar tissue. You can google the trigeminal nerve and you will see what I am facing. He hopes injections of steroids will slow it down. I failed to mention that I am losing my ability to enunciate some sounds and thank goodness I have a long term disability insurance plan because by Jan I will no longer be able to do my job.

Listen to the doctors but know what could be the results.

My 2 cents worth and hope the best for you.

Denny

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Great post. I am almost 15 years post treatment and now starting to see the long term side effects. I had no choice of radiation or no radiation. I had 5 golf ball sized nodes wrapped around caroiid, back then they could not cut there until the shrunk it. The side effects for me have added a trach, my teeth are bad no matter what i do. I am no where near where you are.

Prayers going out for you that the doctor's use all the knowledge and experience they have and patience for you and your family.

Your 2 cents are very much appreciated and please keep us up to date on your results.
John

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I am not complaining...I'm alive and have enjoyed more than I can ever say over the past 13 years. I really just want folks to know what to possibly look for and hopefully learn from what I'm going through and/or have been through. I know I learn a lot on this site. There are thousand out there much worse off than I am.

I think you are probably the "old-timer" here or close to it.

Congrats on 15 years

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

I'm so nervous of what could happen to me in the next 15 years do to the radiation I am now receiving. I'll only be 38 in 15 years! I can only hope and pray that this decision was the best, ultimately. Stay strong and keep praying. I'll pray God leads you to the right decision.
Take care

seesaw
Posts: 15
Joined: Sep 2010

There is no doubt in my mind that I would do the radiation if I had a solid reason to, but with two totally different opinions on this, and the uncertainty of the behavior of mucoepidermoid carcinoma, low grade (or any grade or type, for that matter)I just don't want to make a decision too lightly. My prayers for everyone continue!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Only time will tell! But chances are the technology we received today and the fact that you are younger means you may have less side effects! Everyone is different! Be thankful that you are married and have kids and are not alone! That's my big worry before side effects kick in! :(

Charles

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

I was the same age Kristyn when I heard "you have cancer". From what I know now and have available now that I did not have back almost 15 years ago... you will be better off with long term side effects than I am going thru. The equipment for radiation if 100 times more accurate than in Jan. 1996 along with they have ways to work around things that they could not do now. I recently visited with a friend who was doing radiation treatment and watched the tech's and asked a million questions and they answered all of them. I wish I had the equipment they have now. Just amazing.

More importantly I wish they had this... the CSN. All these people are just amazing, they reach out with support, knowledge, positive attitude, experience and just care more than so many.

I wish I had the Cancer Survivors Network.

All of you will win this ugly war with cancer because of everyone hear.

Thanks to all.

Kristyn, prayers going out for you, the doctors, all CSN members and Your caregivers at home.

John

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Just my take, there is no way I would do radiation if I did not need it. I agree follow-up with scheduled appointments and visits to your ENT on a regular bases for the next year or two. Also change your life style and diet as it too can help prevent you getting C again. Make it a matter of prayer and God will lead you to the right decision and then just believe.

All the best to you my friend

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

You might want to visit the National Library of Medicine
http://www.nlm.nih.gov Stands for National Library of Medicine / National Institutes of Health.

Then on the right side click on "PubMed". This is the actual site that medical doctors and researchers use to look up references. You only get abstracts.

But here is the important thing: YOU CAN ENTER YOUR DOCTOR'S NAME. Or a doctor that you are thinking of going to. Enter last name then a space and first and middle initial, if known. You will know whether you found the right doctor by noting his affiliation, that is, with Loyola or Univ Chicago etc. You can also search a doctor's name on http://www.clinicaltrials.gov.

My wife has a solitary lung nodule. Using the above means, we found a doctor in our city who was conducting a clinical trial on the detection of lung cancer. Perfect. Although his advice was very much in line with other doctors, he did give some very important bits of information. Specifically, he said that although the common practice was to follow the lung nodule for only two years, his advice was a CT-Scan every year for life. He has seen too many advance cases of lung cancer after being clear for two years.

As it turns out, the extra CT-Scans did not find lung cancer but it did find an aggressive adrenal tumor, which is usually fatal. So that lucked out.

So in short use PubMed at the National Library of Medicine and search on your prospective doctor's name.

Also, almost every medical journal is available electronically, but you need to go to a university library. I go to the University of Washington library (not the medical school). The librarians help find the articles I want to read. I transfer them to a flash drive and bring them home to study. Then I erase them; as if I returned the volume.

This is probably more than you want to know. You might find out there are two camps regarding specific treatment options. And you will know who is in each camp. Rick.;\

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