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SNUC-my dad newly diagnosed. Advice please!

pecostiff's picture
pecostiff
Posts: 3
Joined: Apr 2013

Hello everyone my name is Tiffamy Tarango. My dad was recently diagnosed with SNUC on April 25,2013 post  biopsy results. he is going to be treated UT Southwestern in Dallas tx. We met with the oncologist yesterday and he is at at stage 2 with no lymph node involvement. The tumor is large in his frontal sinuses, ethmoid sinus, pressing on the crib form plate, left orbit and occluding his left nostril. The plan is so start chemo and radiation in 2 wks Using external beam radiation for the first 5 weeks and cyberknife therapy on the 6 wk. cisplatin will be use for chemotherapy. I'm wanting to know if anyone who has gone through this can give  me advice. I asked the oncologist if we should go to md Anderson but he said it will cause more of a delay so he will be calling his friend at md Anderson to see if they have any further suggestions. This has been so hard on my family because my father was healthy before this so all along we thought it was just sinus congestion and then we find out its a tumor :( please help. 

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

First off let me start you off saying you have found the best place on the planet to get help and suggestions.  We are a family of survivors and folks in treatment that has seen almost everything.  While I did not have the same cancer as your dad, mine was base of tongue, but I've just come through successful treatment that is rough, but doable.  Others will chime in here on SNUC but I wanted to urge your family to get a second opinion.  I went to MD Andersen for a second and while they mostly agreed with the treatment plan I felt much more comfortable with my team here knowing that I was getting the treatment the best minds could come up with.  If you don't want to travel all the way to Houston for a second opinion there is a very good head and neck group at Baylor Downtown Dallas I could put you in touch with.  At any rate, think about it.

Once he begins treatment we can help you with the side effects that will be coming along and how to deal with them but lets get the treatment locked down first.

Ask any questions you might have, we all want to help.

Joe

pecostiff's picture
pecostiff
Posts: 3
Joined: Apr 2013

Thank you so much. I just talked to md Anderson and I need to speak with my dad to see if he is willing to get a second opinion. He kinda of wants to get the ball rolling and start treatment so I'm scared he won't want to:( I am a nurse and I am big on my "it instinct." I feel like something is telling me we should go to Houston. They told me they are the only center in Texas that does proton therapy radiation. I've a read a couple of stories and this type seems to have worked..

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi TT,

Sorry to hear this about your Dad. Glad you found the site. The folks here are awesome and helped get me through "boot camp" prior to treatment.  It turns out my experience and subsequent decision to seek treatment were well founded due to a 2nd opinion.

When you're making a decision about your LIFE, a 2nd opinion is a no brainer. There are standards of treatment and then then there are those on the cutting edge. A Comprehensive Cancer Center should be a part of your decision making process. 

I started locally in Winchester VA. I very quickly found I felt uncomfortable with the way things were panning out and I was able to get an appointment for a 2nd opinion at Johns Hopkins (#1 for H&N cancer). It was the best thing I could have done. I had a "Team" of doctors, nurses and specialists that all knew what was going on with my case converge in the exam room. I was poked and prodded in 25 minutes more than the entire time at Winchester. Their approach and no holds barred attitude about beating the cancer instilled the confidence I needed to move ahead. To this date (now a week out of treatment) they have been second to no one concerning the attention to detail and follow-up.

Trust your gut. It's telling you to go to Houston for a reason!  Don't worry too much about losing a week or so before treatment can start. As I was told, I had the cancer well before it showed itself and a couple of weeks won't impact the outcome. 

Check out this link. http://health.usnews.com/best-hospitals/rankings/cancer . 

Positive thoughts and prayers

"T"

 

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

Sorry to hear about your father..., most of us can relate to your feelings... Other than having cancer, I was in perfect health.

I had STGIII Tonsil Cancer...

While his treatment plan is a little different than I have heard or seen on here, it's still pretty much the same in may ways... Chemo, rads or some variation consisting of including concurrent.

Like Joe mentioned, if his chemo MD is not very familiar, it might be a good idea for a second opinion. But if you guys trust and have faith in your current team, that's a plus too (if they are capable and experienced with your father's type of cancer).

It's a rough regime' no matter how you sut it, but very doable and pretty high success rates.

There is a ton of great people here, and a lot of history and experience..

Thoughts & Prayers

John

 

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

Welcome aboard, but wish you did not have to meet us this way.

a second opinion is always something that makes a lot of sense.  Not always necessary, but this is not a oold we are talking about.  Doesn't mean that your Dad needs to go to Anderson, but there is s comfort level in a second opinion and sometimes the second opinion is quite different and then the deal changes a lot.

One thing I learned is to ask why and whta the results are supposed to be for each part of the treatment.  I got a second opinion and it was most helpful in letting me be my own best advocate.  Goog luck to your Dad and you.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our little group. Here you will find the most caring and compassionate group of people.
I'm sorry your dad and you are going thru this tough time. I did not have the same cancer as your dad, mine was laryngeal cancer SCC stage IV but I can relate to the fear you are both going thru. Good news is, H&N cancers have become very very treatable and curable.
I live in California but I know MD is very highly regarded. I personally did seek a second opinion even tho I really liked my surgeon. Once I got all the answers I needed I chose the facility I felt most comfortable with which for me was my original dr. I'm not sorry I got another opinion and I highly recommend it. That being said, if you feel comfortable then go with your gutt.
We will all be here to help you and your dad thru treatment, it's tough but doable.
Take care,
Billie

CivilMatt's picture
CivilMatt
Posts: 2963
Joined: May 2012

Pecostiff,

Welcome to the H&N forum, so sorry for the reason.

I too was in (seemingly) perfect health, but I had stage IVa, base of tongue cancer.

It sounds like your Dad has an interesting plan that should get rid of his intruder for good and then it is back to living life.

While treatments can be challenging they are very manageable.

Here’s hoping for few side effects,

Matt

yensid683
Posts: 229
Joined: Apr 2012

to the greatest group of people that no one really ever hoped to join.

I know exactly how you feel.  My diagnosis was a complete surprise.  I was the only one in my family that never smoked, I did all of the 'right' things, healthy diet, exercise, moderation etc and was devastated when I was told that my sore throat and odd after taste was due to a malignant tumor on the base of my tongue!

I agree with my fellow family members, a second opinion is always a good thing, if anything it confirms that your team is pursing the right treatment for your dad.  While we all share commonality with cancer, each of us are different, and our treatment circumstances and modalities are unique. 

It's been 14 months since I was diagnosed, treatments ended in July and while there have been some bumps along the way, I'm free of disease (we strive for 'club NED' - No Evidence of Disease for all of our members, and recovering well. 

Your dad is a lucky man to have such a caring daughter as you!

 

jim and i's picture
jim and i
Posts: 1627
Joined: May 2011

Praying for you and your dad. When my husband was in treatment I would have been lost without this group and they still keep my spirits up. You have found the right place.

DebbieCool

MarineE5
Posts: 754
Joined: Dec 2005

Pecostiff,

I can only echo the words given above. One thing I can add is that I ran into a friend of my wife's when I was going thru my treatments over 8 years ago. His cancer was like your Dad's. He had Chemo and Radiation with the IMRT and he is doing fine today. Retired and playing allot of golf.

It's a bumpy road, but your Dad, you and family can get thru this.

My Best to You and Everyone Here

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Welcome to the list no one wants to be on, but it is a great place for advice.  My cancer is different than your dad's so others will be able to give you better information about that.  I will just say that I also was healthy until being diagnosed with Squamous Cell Carcinoma which had metastacized to my neck lymph nodes on both sides.  I have surgery to remove the small tumor on my tongue and to remove the lymph nodes.  I just started radiation treatments this week. 

Your dad is fortunate to have a daughter who cares and is taking the initiative to learn more about his cancer and treatment.  Keep it up.  Beating cancer is a mental battle and the support of family and friends is very important.  My 27-year old daughter has given me great comfort and support since my diagnosis, even though she lives across the country.  She flew in for my surgery and now sends me encouraging emails and calls me often.  Your dad will appreciate your support and love as much as I appreciate my daughter's.

Michael

 

kelrb
Posts: 1
Joined: Dec 2013

Peco -How is your Dad?  I hope treatment is going well. Is he doing radiation? 

My mom also was in great health, we thought she had her typical seasonal allergies and after a catscan, mri and a bipsy testerday confirmed the awful SNUC.  We have seen ENT at Boston Eye and Ear and will meet with neuro surgeon at Mass general this week---waiting to find out what they are recommending for the course of treatment.

Her tumor is in her nostril, behind one eye, and has broke through the bone to skull, but has not spread to her brain.  

Any advice or anyone else with any experiences to help me and my sister and my dad deal with this would be most appreciated.

debbiejeanne's picture
debbiejeanne
Posts: 2436
Joined: Jan 2010

kelrb, this thread is old and may be overlooked by some.  you should copy and paste your post into a new post so you can get the replies you want and need.  sorry to hear about your mom.  will add her and your family to my prayers.  good luck.

God bless,

dj

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