Questions for doctor

Daddisgrl

Those not knowing what to ask; you can use these as a base.
Please add to it...

1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer?
2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it considered Lymphoma?
3. There are various types of head/neck cancer. Exactly what type of cancer is this so that I can look it up? (example – is it throat?)
4. Is the cancer HPV positive & if so which type of HPV? *Note- more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab & may take 2-3 weeks before it came back HPV+.
5. How often do you see this type & how many have you treated with my type and location of Cancer? *Note- If not experience ask if there is someone at that location that he would recommend
6. Is his cancer curable?
7. What are the survival rates? 5 year, long term?
8. What are the chances of recurrence or new cancer?
9. We know that he is going to have Chemotherapy and Radiation; can you tell us what Chemotherapy drugs you will use?
10. Will the chemo and radiation be done at the same time?
11. Will he be hospitalized at any point for Chemo/Radiation; or will it be done as an outpatient?
12. Will the Chemo drugs be given by mouth or IV? *Note- you might also add the power port to your method of delivery.
13. What is the approx. recovery time & What do you feel are the most common side effects I can most likely expect?
14. What are his other options for treatment?
15. Will you change the treatment if he is not responding?
16. Is there a clinical trial for this type(s) of cancer?
17. If clinical trial, ask what phase. Also ask if it’s randomized and if placebo given.
18. When the cancer was biopsied, did they do Genetic Tumor Profiling to see if he can do targeted chemotherapy?
19. What type of radiation will he need? How many radiation sessions?
A. Do you offer Tomotherapy or Cyber Knife?
20. Can we have a copy of the pathology report and copies of protocol?
21. What is the histology & cell type of the tumor?
22. What is his current prognosis?
23. What is the 5 year prognosis?
24. Does he have any bad prognosis factors?
25. Is follow-up treatment necessary? What does it involve?
26. Will I need a feeding tube and what type of Dr do we need to care for it? *Note- Some use a general surgeon; while others use a gastro
27. We would like to see a nutritionist; do you have someone you can recommend?
28. How do you feel about complimentary therapy such as Vitamin C drips?
29. Will you be the one managing any pain he has?
30. Will I have to come to the office to pick up prescriptions if there is a pain medication change?
31. Since we live in another state, should we look for a pain management Dr in our area?
32. He has been having problems sleeping. Are you able to prescribe something for him to sleep?
33. Do you have a dentist the specializes in evaluating my teeth before treatment starts? *Note- radiation is damaging to the jaw/teeth; some will need teeth extracted & should be evaluated by a dentist that knows what to look for.
34. Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck
35. Do you have a Social Worker that can help me with financial aid and or short or long term disability help?



*Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years

ratface

I can't immediately think of one more?
Thanks, it's a great starting point to tailor questions from although I don't think I would ask or find anyone in the medical profession who would answer all 32. Certainly folks could pick out the pertinent ones. Welcome to the site.

Hondo

ratface said:

I can't immediately think of one more?
Thanks, it's a great starting point to tailor questions from although I don't think I would ask or find anyone in the medical profession who would answer all 32. Certainly folks could pick out the pertinent ones. Welcome to the site.

Good list
Wish I had one when I first started treatment, I was as dumb as a door knob about Cancer back then..



Thanks
Hondo

sweetblood22

Hondo said:

Good list
Wish I had one when I first started treatment, I was as dumb as a door knob about Cancer back then..



Thanks
Hondo

Wow, that's a full list! I
Wow, that's a full list! I couldn't think of more. I bet I only asked about three of those.

Skiffin16

Just a few
Adding just a few variations;

4. Is the cancer HPV positive & if so which type of HPV?
more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab (at least in my case) it took about 2-3 weeks before it came back HPV+.

12. Will the Chemo drugs be given by mouth or IV?
you might also add the power port to your method of delivery.

Great list though....they'll probably think you are setting them up for some liability compensation though...LOL, you are too informed..

Best,
John

staceya

Skiffin16 said:

Just a few
Adding just a few variations;

4. Is the cancer HPV positive & if so which type of HPV?
more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab (at least in my case) it took about 2-3 weeks before it came back HPV+.

12. Will the Chemo drugs be given by mouth or IV?
you might also add the power port to your method of delivery.

Great list though....they'll probably think you are setting them up for some liability compensation though...LOL, you are too informed..

Best,
John

Serendipity!!
I was JUST looking for a list like this to give to someone that I JUST met who has just been dx with uterine? cancer. Strangely enough, she is the office manager for a tru green (she just started there) and I was calling to check something and somehow or another we got on the subject of cancer. She had just been dx a few days before. I recommended this site and have emailed her the list.
As always..THANKS
Stacey

fisrpotpe

Here are a couple
What do you feel are the most common side effects I can most likely expect?

Do you have IV fluids as an automatic help durning treatment?

What is the approx. recovery time, is it as slow or slower than I have heard and read?

Will radiation be done with topro therapy? If not request or demand!

Hope many have you treated with my type and location of Cancer? If not experience ask if there is someone at that location that he would recommend.

Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck

Do you have a Dentist with Radiation experience both pre treatment and many years post? If now find one now and get them involved.

Do you have a Social Worker that can help me with financial aid and or short or long term disability help?

***** not a question but a must, always take 1 person or I like to take two people to doctor's appointments early on as you go thru the biopsy, scan and result phases. The problem is you and #1 caregiver are told you have cancer and when heard you tend to not listen to what doctor says. A third person needs to focus, listen and take notes. Later on you will not recall much of what doctor says.

John

staceya

fisrpotpe said:

Here are a couple
What do you feel are the most common side effects I can most likely expect?

Do you have IV fluids as an automatic help durning treatment?

What is the approx. recovery time, is it as slow or slower than I have heard and read?

Will radiation be done with topro therapy? If not request or demand!

Hope many have you treated with my type and location of Cancer? If not experience ask if there is someone at that location that he would recommend.

Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck

Do you have a Dentist with Radiation experience both pre treatment and many years post? If now find one now and get them involved.

Do you have a Social Worker that can help me with financial aid and or short or long term disability help?

***** not a question but a must, always take 1 person or I like to take two people to doctor's appointments early on as you go thru the biopsy, scan and result phases. The problem is you and #1 caregiver are told you have cancer and when heard you tend to not listen to what doctor says. A third person needs to focus, listen and take notes. Later on you will not recall much of what doctor says.

John

What is topro therapy?
??
Thanks,
Stacey

fisrpotpe

staceya said:

What is topro therapy?
??
Thanks,
Stacey

Answer actually is Tomo Therapy
Stacey, this is the latest of all the radiation equipment. It is much more detailed as to the accuracy which helps aim at the cancer rather than just the general area.

Hope this helps.
John


So I miss spelled, here is the web site http://www.tomotherapy.com/

Skiffin16

fisrpotpe said:

Answer actually is Tomo Therapy
Stacey, this is the latest of all the radiation equipment. It is much more detailed as to the accuracy which helps aim at the cancer rather than just the general area.

Hope this helps.
John


So I miss spelled, here is the web site http://www.tomotherapy.com/

Tomotherapy and IMRT
John, I can't really tell what the relationship is....

Is Tomotherapy basically the protocul or mapping and IMRT is the actual delivery?

Kind of hard to differentiate... I was looking at the differences between IMRT and Rapid Arc, couldn't really find the significant difference there either..other than possibly Rapid Arc might be a little more precise as for collateral tissue damage and shorter delivery...is RapidArc what they call CyberKnife?

Thanks,
John

fisrpotpe

Skiffin16 said:

Tomotherapy and IMRT
John, I can't really tell what the relationship is....

Is Tomotherapy basically the protocul or mapping and IMRT is the actual delivery?

Kind of hard to differentiate... I was looking at the differences between IMRT and Rapid Arc, couldn't really find the significant difference there either..other than possibly Rapid Arc might be a little more precise as for collateral tissue damage and shorter delivery...is RapidArc what they call CyberKnife?

Thanks,
John

Great Questions
Your questions are great ones that I do not know answers too. Being a dinosaur in the survivorship of treatments I was allowed to go with a friend to see the equipment work and do there job. Many in my local support group of head and neck survivors have shared the new equipment, I talked to my ENT at Loyola University and he was extremely thrilled with the results they were seeing with Tomotherapy.
The equipment operator shared how the machine is programed per each case to reduce the damage to non cancer area's.

Wish I knew more.

John

Goalie

fisrpotpe said:

Great Questions
Your questions are great ones that I do not know answers too. Being a dinosaur in the survivorship of treatments I was allowed to go with a friend to see the equipment work and do there job. Many in my local support group of head and neck survivors have shared the new equipment, I talked to my ENT at Loyola University and he was extremely thrilled with the results they were seeing with Tomotherapy.
The equipment operator shared how the machine is programed per each case to reduce the damage to non cancer area's.

Wish I knew more.

John

Slight editing
I think that, in the spirit of Skiffin and in light of our recent discussions on another thread I would suggest that 26

26. What type of Dr do we need to care for the feeding tube?

be more like:

26. Will I need a feeding tube and what type of Dr do we need to care for it?

Beyond that, I think this is a terrific effort and only wish that we had had these nine months ago. I think that something very much like this should be handed out in the very fist meeting with the docs. I say this not because I think the docs or the hospital is hiding anything. My docs (and nurses) were wonderful and answered every question we had openly and truthfully and I trust(ed) them absolutely. But more and more complete information sooner is definitely to the patient's benefit.

Doug

Skiffin16

Goalie said:

Slight editing
I think that, in the spirit of Skiffin and in light of our recent discussions on another thread I would suggest that 26

26. What type of Dr do we need to care for the feeding tube?

be more like:

26. Will I need a feeding tube and what type of Dr do we need to care for it?

Beyond that, I think this is a terrific effort and only wish that we had had these nine months ago. I think that something very much like this should be handed out in the very fist meeting with the docs. I say this not because I think the docs or the hospital is hiding anything. My docs (and nurses) were wonderful and answered every question we had openly and truthfully and I trust(ed) them absolutely. But more and more complete information sooner is definitely to the patient's benefit.

Doug

Information Sharing
A lot must depend on your facility or cancer organization.

A lot of this plus more and very detailed information was given to me at a "Chemo Class". My facility holds "Chemo Class" every week I believe for new patients, kind of an orientation, but taylored to you and your protocul.

They gave me 3-4 page literature on each type of chemo drug...origin, studies, side effects, etc....

Reactions, things to look for, neuropathy, tenitus, fever, etc....

Contacts, after and during hours.

all kinds of good and useful information...

JG

stevenl

Skiffin16 said:

Information Sharing
A lot must depend on your facility or cancer organization.

A lot of this plus more and very detailed information was given to me at a "Chemo Class". My facility holds "Chemo Class" every week I believe for new patients, kind of an orientation, but taylored to you and your protocul.

They gave me 3-4 page literature on each type of chemo drug...origin, studies, side effects, etc....

Reactions, things to look for, neuropathy, tenitus, fever, etc....

Contacts, after and during hours.

all kinds of good and useful information...

JG

Survival
When my ENT told me I had cancer(ST 4 RT Tonsil), he looked me directly in the eyes.
And when my wife and daughter stopped freakin out he said, I can tell by looking in your eyes and by your demeanor you will survive this. Just kind of a footnote on survival rates. Stage 4 cancer, if you ask for the facts will only make you think the worst.
All the best,
Steve

P.S. A very good question list indeed

fisrpotpe

stevenl said:

Survival
When my ENT told me I had cancer(ST 4 RT Tonsil), he looked me directly in the eyes.
And when my wife and daughter stopped freakin out he said, I can tell by looking in your eyes and by your demeanor you will survive this. Just kind of a footnote on survival rates. Stage 4 cancer, if you ask for the facts will only make you think the worst.
All the best,
Steve

P.S. A very good question list indeed

Survival - 2
I was told the same thing, by looking into your eye's. He said he can tell by there eye's. If the eyes never leave looking down at the floor, they have given up and will not make it thru the fight. That is why he was/is so big on a positive mental attitude.

Ask the doc. "Can you tell by looking into my eye's, will I make it?"

John

stevenl

fisrpotpe said:

Survival - 2
I was told the same thing, by looking into your eye's. He said he can tell by there eye's. If the eyes never leave looking down at the floor, they have given up and will not make it thru the fight. That is why he was/is so big on a positive mental attitude.

Ask the doc. "Can you tell by looking into my eye's, will I make it?"

John

Strange
You know it is strange but I never thought for 1 minute I would die from this.
Maybe eventually, but not right now. I'Ve just got too much livin to do yet.

Daddisgrl

stevenl said:

Strange
You know it is strange but I never thought for 1 minute I would die from this.
Maybe eventually, but not right now. I'Ve just got too much livin to do yet.

Thanks...
Thanks; the questions were something I did in the beginning; I've wanted to adjust them but haven't had time. I can think of a lot more to add; some could be considered tips verses questions.

I wrote one called Cancer tips - how to get help after being the caregiver for my dad which is more of a general cancer tips; where the one above is head & neck

http://www.cancercompass.com/message-board/message/all,52152,0.htm

Daddisgrl

Skiffin16 said:

Tomotherapy and IMRT
John, I can't really tell what the relationship is....

Is Tomotherapy basically the protocul or mapping and IMRT is the actual delivery?

Kind of hard to differentiate... I was looking at the differences between IMRT and Rapid Arc, couldn't really find the significant difference there either..other than possibly Rapid Arc might be a little more precise as for collateral tissue damage and shorter delivery...is RapidArc what they call CyberKnife?

Thanks,
John

I wish I could answer this.
I wish I could answer this. There are people on cancer compass that have had it. Brett Hudson from the 70's Hudson Brothers had cyber knife. I kick myself for not calling both back after my hub was diagnosed & had a gamer plan because he probably could have had one or the other instead of the regular radiation that he had. From what I understand of both; they are a more direct radiation where the one most places offers is not.

Those needing radiation; look into cyber knife & tomotherapy.

What they don't tell you with radiation is that there is possible memory loss depending on where it's targeting. There are a lot of things my hub can't do that he could before cancer.

Daddisgrl

staceya said:

Serendipity!!
I was JUST looking for a list like this to give to someone that I JUST met who has just been dx with uterine? cancer. Strangely enough, she is the office manager for a tru green (she just started there) and I was calling to check something and somehow or another we got on the subject of cancer. She had just been dx a few days before. I recommended this site and have emailed her the list.
As always..THANKS
Stacey

staceya
staceya; what I usually do is come to ACS site; look up the cancer; then on the right side is a doctor question link

I'm not sure if this is the correct cancer for your friend but here is the link
http://www.cancer.org/Cancer/UterineSarcoma/DetailedGuide/uterine-sarcoma-talking-with-doctor

I will also go to the National Cancer Institute's site as well as any cancer specific sites to see if I can find more things to ask.

My son has an uncle who is a cancer drug rep; he gave me excellent questions when my dad was fighting cancer; so when my hub was diagnosed; I knew I had to be prepared & I knew I needed to find the best place within reason.

There's a really good article here
http://tinyurl.com/NewsweekCancer it's really long but explains why you need to find a good place to go to.

tonyb

you might add....

You might add, and i am not sure of how to word this. If your cancer turns out to be hpv related, how might it endanger your spouse, and what can you do to minize their risk.
In other words cancer is not a comunicable disease but hpv is a virus that can be spread, and can be a factor in causing cancer. What precautions can we take to minize their risk?
Maybe more frequent check ups? Maybe the newer vaccines? I don't know if these questions are pertinent or not, please forgive my ignorance, But its something i think about a lot.

Daddisgrl

tonyb said:

you might add....

You might add, and i am not sure of how to word this. If your cancer turns out to be hpv related, how might it endanger your spouse, and what can you do to minize their risk.
In other words cancer is not a comunicable disease but hpv is a virus that can be spread, and can be a factor in causing cancer. What precautions can we take to minize their risk?
Maybe more frequent check ups? Maybe the newer vaccines? I don't know if these questions are pertinent or not, please forgive my ignorance, But its something i think about a lot.

HPV
Hi Tony; whats "funny" is that I had just had an HPV test at the GYN right before my hub was diagnosed. I just had another today. The only option that I know of is women getting tested for HPV during their yearly GYN appointment. Some insurance companies won't pay for testing every year. There is no test for men.

There is a Gardasil vaccine for teens & young adults but it only "protects" against 4 strains & they don't know how long the vaccine will last & if it will even help. What they also do not tell you is that you may end up with one of the side effects. Young; healthy teens are now bedridden from it. Since my daughter already has body ache/muscle problems; she will not be getting it.

There may be something better in the next few years; so we're waiting.