THE TUMOR BOARD! Hard Day
well....today I met with the "team"....THE TUMOR BOARD. The surgeon, medical and radiation oncologists. People, I never in my life thought I'd ever meet.
After my neck dissection last week, it was first to the surgeon who removed the drain and told me that it was one lymph node. An adjacent lymph node was fine. I was feeling pretty good. Four surgeries but feeling ok.
Next, the medical oncologist who really layed it on me. I thought I was prepared, but I really wasn't. She told me they will use 3 strong chemo drugs (don't have it in front of me but am too exhausted to look right now). In -patient 5 days, back home 9 days multiplied 4-6 times. My hair will fall out, I will be sick, feel like I'm swallowing class, possibly a feeding tube, have mouth sores and all of this will get progressively worse as the treatment goes on. but that's not all...it will take a number of months to feel like myself. I didn't like her at all. Very clinical.
Last, radiation oncologist. He was actually nice but I think I was still in shock and couldn't cry anymore. he was at least reassuring and told me that my case was an easy one. He said they could knock this out with a very high cure rate. Told me all the side effects, signed papers, set up yet another CAT PET scan and the planning day when they make the mask.
I did not go in unprepared, but some of what I heard and maybe even the way the information was delivered was startling. I read all about rad and the different types but I believe what it comes down to is the skill and experience of the doctor.
I'm upset. I know I'm speaking to all who have gone before me. I'm looking for encouragement and hope that maybe it won't be as bad as they make it sound. I just felt like I had information coming at me from so many angles, hence THE TUMOR BOARD!
Of course they mentioned the ONE person who continued to jog the entire time and the ONE person who went to work on the days she was home. I didn't hear much of it though as I was truly stunned.
since I am affected on one side only, the rad doctor thinks that my saliva glands will be spared on the other side enough so I probably won't have to carry around a water bottle.
Im just feeling very alone. I don't think anyone can possibly understand this unless you go through it. I'm a single mom living alone with my young teenager. It's a lot to take. Thinking about not seeing her for those days when I'm gone. All very hard to take.
Thanks for "listening".....BunnyMom
Comments
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bunnymom, i'm sure your head
bunnymom, i'm sure your head is spinning and your thoughts are running away with you so, please, stop, take a few deep breaths and try to calm down. first, I think the MO told you of all the POSSIBLE side effects, i think it is unlikely that you will get them all. i'm sure others who know more will chime in to add their experience also. unfortunately, it took most of us months to get to feeling good again. the tx is rough and takes a lot of of you but you will get thru this. that's great that the rad ocologist thinks you will not need a water bottle with you all the time. That is a really big deal!! everyone really reacts differently to tx and there are people on here who took less time to get back to feeling good and maybe you will be one of those people. your body will let you know. try to take it one day at a time and do what your body tells you each day. if your body says to rest, then rest, if it says you have the energy to do something, then do something. only you will know what you feel up to doing. you are NOT ALONE, we are here for you and we will encourage you and help you along your journey. when friend ask if they can help, say yes. maybe they can give you a ride to tx, cook a meal for you and your daughter, run to the store, bring your daughter to the hospital to visit (age?), etc. please allow yourself to accept help. praying for tx to go well and for you to weather it well. please keep us posted on your progress. we'll be on the sidelines cheering for you! come here as much as you need to and post whatever you are feeling. we're all family here and we'll do what we can to help. you WILL GET THRU THIS!
God bless you,
dj
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Dj,debbiejeanne said:bunnymom, i'm sure your head
bunnymom, i'm sure your head is spinning and your thoughts are running away with you so, please, stop, take a few deep breaths and try to calm down. first, I think the MO told you of all the POSSIBLE side effects, i think it is unlikely that you will get them all. i'm sure others who know more will chime in to add their experience also. unfortunately, it took most of us months to get to feeling good again. the tx is rough and takes a lot of of you but you will get thru this. that's great that the rad ocologist thinks you will not need a water bottle with you all the time. That is a really big deal!! everyone really reacts differently to tx and there are people on here who took less time to get back to feeling good and maybe you will be one of those people. your body will let you know. try to take it one day at a time and do what your body tells you each day. if your body says to rest, then rest, if it says you have the energy to do something, then do something. only you will know what you feel up to doing. you are NOT ALONE, we are here for you and we will encourage you and help you along your journey. when friend ask if they can help, say yes. maybe they can give you a ride to tx, cook a meal for you and your daughter, run to the store, bring your daughter to the hospital to visit (age?), etc. please allow yourself to accept help. praying for tx to go well and for you to weather it well. please keep us posted on your progress. we'll be on the sidelines cheering for you! come here as much as you need to and post whatever you are feeling. we're all family here and we'll do what we can to help. you WILL GET THRU THIS!
God bless you,
dj
thank you. My daughter isDj,
thank you. My daughter is 13. So far, she seems to be absorbing this quite well but I worry about her. I have a unique situation, the hospital is 2 hours from home and family is even farther. It's going to take a coordinated effort to make this work. At least she will be out of school while I get this treatment. The logistics will be a bit easier than if she was in school.
One other good thing the rad dr said is because it's one one side, he thinks I'll be able to continue swallowing. I liked that.
Honestly, the chemo dr was tough. Maybe they do tell you the worst-case situation. She just came in layed it out and left me with her nurse. The nurse said she could see that I was in distress and just left me with a binder full of information that she said we could go over...."layer". I have it but am afraid to open it!
how long does it take to get better? How long do you feel bad after the treatment is finished?
BM
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bm, i'm sorry you have soBunnymom said:Dj,
thank you. My daughter isDj,
thank you. My daughter is 13. So far, she seems to be absorbing this quite well but I worry about her. I have a unique situation, the hospital is 2 hours from home and family is even farther. It's going to take a coordinated effort to make this work. At least she will be out of school while I get this treatment. The logistics will be a bit easier than if she was in school.
One other good thing the rad dr said is because it's one one side, he thinks I'll be able to continue swallowing. I liked that.
Honestly, the chemo dr was tough. Maybe they do tell you the worst-case situation. She just came in layed it out and left me with her nurse. The nurse said she could see that I was in distress and just left me with a binder full of information that she said we could go over...."layer". I have it but am afraid to open it!
how long does it take to get better? How long do you feel bad after the treatment is finished?
BM
bm, i'm sorry you have so much to work out for tx. it always make me sad when one has so much to worry about and figure out on top of tx itself. is it possible for a family member to come stay with you while you have tx? is there more than one family member so maybe they could trade weeks/days? do you have a couple good friends who could help take care of your daughter? as for the chemo doctor, i don't like doctors like that. they throw cancer and tx at us and act like they just said have a wonderful day! its darn hard hearing all that info then trying to absorb it and figure out how it will all work out. you know you can change doctors if you aren't happy with this one. many here say you have to have faith in your team to stay positive so that may be something to think about. i'm praying for you and your daughter. i'm sure you will figure out all the logistics. you probably have a little time to work on that before tx starts. i had radiation in 8/09 so i don't really remember how long it took me to feel better but I don't remember it taking a real long time either. the wrost was the neck burn and that was helped immediately with aquafour. i don't remember how much time it took to get energy back. i never had chemo so i can't comment on that but there are many here who will be able to answer your questions. as for the book, it probably justs repeats what you were told today. you will open it when you feel ready. BM, tx is no walk in the park, but it is doable. you can do this and we will be right here for you. come here whenever you want to talk, ask quesions, vent, cry, share good news, whatever you feel. there's nothing you can't discuss here. your head will stop spinning in a few days and you will start to think more clearly. hang in there, you can and will do this. sending prayers your way.
God bless you,
dj
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tough news to hear
Bunnymom,
It is a lot to take in, I remember it well. I was in shocked disbelief too.
I took my notebook full of stuff home and eventually read every word of it. While it all seemed bad, I was tuned in to the H&N channel so there were no surprises. The whole scenario was playing out right here, 24/7, just different people and a different time. The posts can be full of hope with a little hard time thrown in.
As dj mentioned, virtually no one gets all the side effect and you most likely won’t either. Just take this trip one step at a time and before you know it, the hard part will be over. As you start these steps, check in and ask questions, we have a few tips to help.
Look through the Superthread, there is a lot of good info in there.
Good luck, breath deep and stay calm, you truly will be alright.
Matt
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worst case scenarioCivilMatt said:tough news to hear
Bunnymom,
It is a lot to take in, I remember it well. I was in shocked disbelief too.
I took my notebook full of stuff home and eventually read every word of it. While it all seemed bad, I was tuned in to the H&N channel so there were no surprises. The whole scenario was playing out right here, 24/7, just different people and a different time. The posts can be full of hope with a little hard time thrown in.
As dj mentioned, virtually no one gets all the side effect and you most likely won’t either. Just take this trip one step at a time and before you know it, the hard part will be over. As you start these steps, check in and ask questions, we have a few tips to help.
Look through the Superthread, there is a lot of good info in there.
Good luck, breath deep and stay calm, you truly will be alright.
Matt
Bunny, sounds like they have given you worst case to prepare. It will be tough I am sure but there is a lone mom in the UK who has recently got through it looking after a toddler. I am halfway through week 3. I jogged 3 miles yesterday and cycled 15 the day before. I am going out on my bike today. I am sure it will catch up with me but my point is the side effects don't appear to be immediate. I got weighed yesterday and had put on 4 pounds! I know it is daunting and really feel for you. Regards, G.
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Yes I remember mine too.
That is a day I will always remember, as will you. I like the fact they did tell me what to expect and what they were going to do. I had researshed very well and I felt I was ready for whatever they could tell me. Wow, was I wrong. Yes they through me a curve, I couldn't survive rad or chemo,but I'm ok. You will get through this and beat it as well. You can always ask questions or just come and vent sometimes. It helps, just knowing others have been their, and do really understand how you are feeling, and what you are going through.
wmc Oct 2013
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I feel like Alice inwmc said:Yes I remember mine too.
That is a day I will always remember, as will you. I like the fact they did tell me what to expect and what they were going to do. I had researshed very well and I felt I was ready for whatever they could tell me. Wow, was I wrong. Yes they through me a curve, I couldn't survive rad or chemo,but I'm ok. You will get through this and beat it as well. You can always ask questions or just come and vent sometimes. It helps, just knowing others have been their, and do really understand how you are feeling, and what you are going through.
wmc Oct 2013
I feel like Alice in Wonderland when she fell down the rabbit hole. It's a strange new world, one I don't like, one I want out of but it's a place that I know I have to be. Horrible!
bm
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meeting with Doctors
Bunnymom, I'm sure your head is spinning with everythign they threw at you yesterday. It's a lot to take in regardless of how prepared you think you are and quite frankly some doctors can deliver the message much better than others. Not everyone experiences the same side effects but most of us get hit with some for sure.
I replied to your earlier post on chemo and I only had Erbitux so I can't comment on what you will experience with your chemo drugs. Erbitux was relatively easy compared to other drugs that others receive for H&N cancers. not sure why a doctor chooses one over the other but I'm sure there is a good reason.
As far as radiation, they tried to spare the saliva glands on the left side of my mouth as well so I have some saliva production but no where near where it was. I still have dry mouth, take a saliva stimulating pill 3 times a day (pilocarpine) and it seems to help. So does chewing sugarless gum, drink fizzy water and I'm now trying the oil pull to see if that helps. I no longer have to carry a bottle of water like when I was going through treatment but one is never far away and I always have a few in my car. It is getting better like most other side effect so all positive there.
I think all i heard in your post was that your radiation oncologist said they could knock this out with "a very high cure rate". That's what you need to focus your energies on and stay positive that you can beat this thing. You will be able to see you daughter's prom, graduate from high school, get married and have grandchildern some day that you will be able to enjoy:) Yes it will be a pain, you will have some tough weeks ahead, but you have to stay focused on the positive that you can and will beat this thing and this time next year it will be a distant memory. In a couple of short months this will be behind you and you will start healing and on the road to recovery. I'm not trying to trivialize what you will go through the next several weeks but you have to keep your sights on the long term, a "very high cure rate" as that all that matters right now. At 13 years old your daughter will most likely be a very big help and key supporter as you deal with all the crap for the next several weeks to acheive that "very high cure rate".
Stay positive and know in your heart that you will be around for a very long time to enjoy life with your beautiful daughter. That's what's important.
Keith
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I'm with everyone who said
the Oncologist gave the the worst possible scenerio......that way when things aren't nearly so bad, you'll feel lucky. So far in my two years on here, nobody has lost their hair (a little thinning, a stip on the back of the neck.....that's about it). I was told to get a buzz cut, I didn't go that far, but I did cut my hair.....and never needed to do that either. There's also a good chance that you body will not need to be in-patient for 5 days....if your blood counts stay up, and you keep hydrated.....they might not see the need to stay in for 5 days.
You may or may not need a feeding tube....but if you do, you'll be joining a VERY large club.....most of us had one and it's no biggie (a life saver for many).
Most of us got some saliva back.....at least 50%. Learning to live with dry mouth isn't as horrible as it may sound.....keeping a bottle of water around isn't hard. Actually, I've become a huge water drinker (after 30 or 40 years of never drinking it), so it has a healthy side to it
.Thing is....looking at treatment for your side of the tunnel makes it look like it might as well go on forever.....but it goes fast. It won't be long before you're seeing the light at the end.....and then poof....it IS the end, and you're done with treatment and moving forward to a new you.
Not everybody gets all the side effects. I didn't ever get a sore throat.....the mouth sores are what forced me to use my tube. Some folks never get those. Just stick close to this forum.....we'll help you through the tough times with tips and tricks.....things the Drs. don't even think of.....
p
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Certainly you are overwhelmed
Give yourself time to absorb it all and then go back and ask any questions you have remaining. Each person reacts differently to treatments and so will you. You may avoid some of the side effects. Hang on to the positives like saving your parotid gland on one side and being able to swallow is huge.
I met with a medical oncologist (maybe a clone of the one you had) who was so negative and depressing, that I ran the other way. Some just do not have good bedside manners or common sense. She could have at least said "these are possible side effects and you may experience some but not others and I will be there to help you manage the side effects so they will be more bearable." They do have to monitor your heart, vitals, hydration, and blood so that if it becomes too toxic, they may make changes in the amount or type of chemo given. If you do not like the one you met request a different oncologist! You need to feel supported and understood and be treated like a person not a clinical diagnosis.
I think you will be amazed at how many offers of help you will have from friends and family and just enjoy the help. It keeps one's mind occupied during the treatments.
Are you still going to check on the TOMO? Do it if it will make you feel better to look at all posibilities. What did your surgeon or tumor board say about the proton therapy? Don't know if you have had any time to ask yet.
Lastly, you can do this and it will go by quickly and you will get to the other side.
I was not the jogger, but did manage to keep up my zumba,aerobics, and yoga throughout, but with adaptations.
Peace,
PJ
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info overload
Hi BunnyMom,
I'm sorry to hear the despair and confusion now but hopefully you take the opportunity to write down the points of concern and follow up and get more details, here and other credible source, and your doctors. There are those who want to gather all the info and be fully informed; there are those who want no information and only instructions from the doctors office with appointment schedules. I guess each of us needs to find our own comfort zone and go forth.
I've been an advocate to attend tumor board. With more experience here, I need to put more caveats about the experience. Like you experienced they lay it all out and speaking to each other in clinical and matter of factly. For those who prefer not to grab the raw feed, maybe it is better to get the edited story from providers in a different manner. Good luck, Don
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