What would you have wanted to know
I'm volunteeering in a support group for H&N cancer patients at my HMO. One of the things we are looking at doing is developing some sort of booklet giving people in, or headed in to, treatment a guide book for how to cope, what to expect. I have my own experience to draw on, but there are a significant number here that have their own insights. I found this site towards the end of my sixth week of treatment, and would have been better informed if I had something like the Superthread.
I will freely borrow from the Superthread, add in my own insights, but knowing what you know now, what do you wish someone had explained?
Also, I have a hard time believing no one, and no other organization has not already done this. Did your treatment provider give you anything like a guide or roadmap of what was coming, who are they, and can I get a copy?
Also, web sites. This is about the only site I found that seems to offer practical information. I found a lot of duplication of not very useful info on other sites. Did any of you find a site you thought gave you real, practical help, or good info on getting through treatment, and if so, which ones?
Comments
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Info
One of my first contacts when my diagnosis was determined was The Firefighter Cancer Support Network. They provided me with a "Tool Box" that was loaded with file folders any just about information on the whole process I was about to face. And you have the option of having a mentor who has been through the same type of treatment and you are facing.
Just my 2 cents. Unlike most I have 25yrs of Emergeny Care experience, so I was fairly well versed in what was about to take place. Thanks and Good Luck.
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what to choose to put into a reference for new patients
It sounds pretty simple, but the reality of treatment for head and neck cancer, stated in frank terms, I think would terrify new patients.
On the practical side, induction chemo will make you the sickest you have ever felt, despite the assurances of the oncology people that they have great medications that will ameliorate "most" of the side effects, my experience is such that they LIED! I had one round of induction chemo, 1 day of taxotere, 1 day of cisplatin and 3 days of 5-FU and I'd liken it to the worst stomach flu you ever had, the worst hangover you ever had, and the worst case of sea sickness you ever had.
From a radiation/chemo standpoint, the first is the potential for claustrophobia when they make the mask, and then clamp you into the table for 30+ trips through the 'toaster', the aspect of not being able to see what is going on, the omnious sounds of the IMRT head moving, the massive clunk of the power contactor picking up when the turn on the linear accellerator and begin toasting you.
They tell you that you will have discomfort, but they don't go anywhere near preparing you for what that sore throat will feel like. I compared it to the pain of a freshly skinned knee, dragged over miles of hot crushed glass, scrubbed with a hot rusty bottle brush, mopped with a couple of coats of fire and then packed in layers of library paste, and the impact is not just to your swallowing throat, it extends up into your soft pallet and down to the bottom of your neck (depending on where the disease is located).
Recovery is glacial, they told me that it would be 4-6 weeks before I returned to some semblance of normal, but it was more on like 2-3 months for functionality and then 12-14 months before I was back to normal
they tell you that you will have some impact to your salivary glands, but they don't tell you that the changes will be permanent.
they tell you that you will have long term impacts from radiation therapy, but they don't say anything about radiation fibrosis syndrome.
If you get an infusion port, they don't say anything about the possible complications from the port. I was told nothing about the potential for creating a life threatening blood clot in my jugular. I did research on it AFTER i developed a clot, the risk is just under 5%, but in terms of causes of a jugular vein clot, central venous catheterization accounts for 40%!
they tell you that you'll adapt after you complete recovery, but they don't tell you that you'll never be able to eat anything again unless you have a bottle of water that you can take small sips from as you try to eat even a simple sandwich!
I sound like I'm ranting and I am, they never let me know any of the darker side stuff!
the challenge in creating a reference guide is balancing the stark reality of treatment and recovery with the need to provide upbeat, positive information on tackling the beast and defeating it.
I am 5 years out from the end of treatment so hooray for me, and I'm grateful for all the help I received, but even more so for what I found on these discussion boards. It helps big time to talk with people who are or who have been through the mill previously.
I don't envy you the challenge that lies ahead.
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Books
My managed health company gave me a package about 5 inches thick with info.. not all useless, not all relevant.. I'll look up where they came from.
What do I wish I had known?
That Cancer isn't a treatment, then all better thing. That it takes time from the incredible beating our bodies take.
That this isn't like other cancers. Drs are dealing with a lot of structures in a very small space, and a lot of those "innocent" structures are going to get hurt..
That while it is possible to power thru it, and keep working, rest IS good.
I wish I had known about the hell weeks after radiation. I was totally wiped by the last rad appt. But I got there. Then I was told about the next 3 - 4 weeks.
That while you wish treatment would hurry up and start, once it does it's like a whirlwind
Oh, Most important! Eat! before treatment, EAT anything and everything you like, really pig out!
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Good jobyensid683 said:what to choose to put into a reference for new patients
It sounds pretty simple, but the reality of treatment for head and neck cancer, stated in frank terms, I think would terrify new patients.
On the practical side, induction chemo will make you the sickest you have ever felt, despite the assurances of the oncology people that they have great medications that will ameliorate "most" of the side effects, my experience is such that they LIED! I had one round of induction chemo, 1 day of taxotere, 1 day of cisplatin and 3 days of 5-FU and I'd liken it to the worst stomach flu you ever had, the worst hangover you ever had, and the worst case of sea sickness you ever had.
From a radiation/chemo standpoint, the first is the potential for claustrophobia when they make the mask, and then clamp you into the table for 30+ trips through the 'toaster', the aspect of not being able to see what is going on, the omnious sounds of the IMRT head moving, the massive clunk of the power contactor picking up when the turn on the linear accellerator and begin toasting you.
They tell you that you will have discomfort, but they don't go anywhere near preparing you for what that sore throat will feel like. I compared it to the pain of a freshly skinned knee, dragged over miles of hot crushed glass, scrubbed with a hot rusty bottle brush, mopped with a couple of coats of fire and then packed in layers of library paste, and the impact is not just to your swallowing throat, it extends up into your soft pallet and down to the bottom of your neck (depending on where the disease is located).
Recovery is glacial, they told me that it would be 4-6 weeks before I returned to some semblance of normal, but it was more on like 2-3 months for functionality and then 12-14 months before I was back to normal
they tell you that you will have some impact to your salivary glands, but they don't tell you that the changes will be permanent.
they tell you that you will have long term impacts from radiation therapy, but they don't say anything about radiation fibrosis syndrome.
If you get an infusion port, they don't say anything about the possible complications from the port. I was told nothing about the potential for creating a life threatening blood clot in my jugular. I did research on it AFTER i developed a clot, the risk is just under 5%, but in terms of causes of a jugular vein clot, central venous catheterization accounts for 40%!
they tell you that you'll adapt after you complete recovery, but they don't tell you that you'll never be able to eat anything again unless you have a bottle of water that you can take small sips from as you try to eat even a simple sandwich!
I sound like I'm ranting and I am, they never let me know any of the darker side stuff!
the challenge in creating a reference guide is balancing the stark reality of treatment and recovery with the need to provide upbeat, positive information on tackling the beast and defeating it.
I am 5 years out from the end of treatment so hooray for me, and I'm grateful for all the help I received, but even more so for what I found on these discussion boards. It helps big time to talk with people who are or who have been through the mill previously.
I don't envy you the challenge that lies ahead.
Well stated and well written. As an 8 year survivor, I truely concur.
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So far, excellent, exactly
So far, excellent, exactly what I am looking for. I'm torn between pessimism that nothing can really make you ready for treatment, and a belief that knowledge makes things better. My HMO put me through lectures and classes, but week three mucosites still took me by surprise. Only in week six did I learn that for most people things start getting heavy in week three/four. A cramp in my leg has always been just a charlie-horse, turns out it's also deep-vein thrombosis. *That* would have been useful to know.
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Your Primary Care
I think what I learned most as the caregiver is that you need to be sure your primary care doc is as involved in your care as the cancer team. My husband had an undetected pneumonia that turned into 3 empyemas in his chest and he had to have major lung surgery after dealing with the cancer treatment. I feel if there was a hospitalist on staff at the cancer center that watched for everything that could happen in association to treatments they could have caught it in time OR if they would have said your primary care needs to be as involved in this process as the cancer team perhaps it would have been detected long before it turned into what it did. Specialsts focus on their speciality and no one seemed to be looking at the bigger picture of what can happen during treatment. As he dropped from 170 to 124 the cancer center kept giving him fluids and said it happens and that sometimes it takes some longer to recover. I can not change what happened but if anyone can learn from our experience I wanted to share this. NWife.
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I sent them a message and hadSprint Car Dude said:Info
One of my first contacts when my diagnosis was determined was The Firefighter Cancer Support Network. They provided me with a "Tool Box" that was loaded with file folders any just about information on the whole process I was about to face. And you have the option of having a mentor who has been through the same type of treatment and you are facing.
Just my 2 cents. Unlike most I have 25yrs of Emergeny Care experience, so I was fairly well versed in what was about to take place. Thanks and Good Luck.
I sent them a message and had two calls back within 12 hours. One from national, one from state.
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Do you eat to live or live to eat ?
My mom used to say that some people eat to live and others live to eat. I USED to live to eat. I wish I had been told about the possibility of a swallowing problem and what it MEANS. If it had been fully explained, I would have made sure that all the meals I could eat would only be my most favorite meals.
After chemotherapy and radiation, I did get off my feeding tude and was able to drink fluids and eat soft foods. I then had a radical left neck dissection. I needed a feeding tube again because all I can do now is barely sip water.
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The Truth
My husband and I struggle with this question, too. We have been put in contact with several newly diagnosed patients. Since honestly what effects people expereince during treatment is not consistent, we find ourselves torn between giving them the info we wish we have known and holding back because it is possible they may have a far easier path to walk and we don't want to come across as negative or alarmist. You don't know what people can handle or would find helpful before treatment. We were so positive going into it and hopeful that he would make it through without all the difficulty that came to pass. Honestly, if they told some people the truth....it is hard to predict how they might respond.
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info
It was incredible how little information we were given prior, or during, treatment. I guess they didn't wan to address the inevitable. Unfortunately, yenside683, has gotten it right, the side effects of treatment are terrible, but survivable. We learned more from this site than any other source. Our managed care provider gave us an unforgivable amount of information on side effects and how to deal with them. When we asked questions regarding how side effects they had very little input. When I went to this web site I knew that what my husband was going through was not unique. I am grateful for all we learned from other survivors on this site and consider it an invaluable resource. It's a shame we had to search to find it. Kudos to you for making the information accessible to your group.
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Wow!
Hello my friend! How did I know you would get involved in such a great project?
I am speaking from a caregiver's point of view... but here is what I think patients need know:
1. Anyone who is going through this will need a good support system. I drove my husband to and from every treatment. He was treated at Johns Hopkins, and while I sat in the waiting room every day for my husband to have his radiation treatments, I met several men who were just starting their journey and had NO ONE to support them. Because they drove the first few times on their own, they thought "this is a piece of cake" and "I can do this." I often think about them to this day, and I wonder how they survived. (I actually thought about volunteering my time for those who had no support, but I am finding my husband still needs me, as well as my 91 year old father-in law who also lives with us...)
2. Everyone's journey is different. So, there can be no "THIS IS THE WAY IT WILL BE FOR YOU." My husband is 8 months post and still struggling to eat many things. I have read about others on here that are back to eating everything they ate pre chemo/radiation. So, to know going in that there is not a "one size fits all" recovery.
3. I think a list of supplements and where to find them would be helpful. For example, the Very High Calorie Boost, Benecalorie, etc. Also, the information you found on fighting thrush and Stoppers4 for dry mouth.
4. Keep a notebook (or several). I have a notebook documenting every visit to ever dr. we went to along with what was said/discussed at each one. I also wrote down vitals and weight at each visit. I can't tell you how many times a dr. would ask a question, and I would say, "Wait, I have that written down." Don't forget to write the date of each visit, too
I also kept a different notebook documenting exactly what my husband ate, when he got sick, etc.
A third notebook was for his medication schedule. I don't know what we would have done without it. I would sit down every Sunday and write the medication list for the week. I also bought a timer to go off to tell us when the next round of pills were due.
If I think of anything else, I will let you know.
Again, good for you for "giving back." What a great gesture.
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Wow!yensid683 said:what to choose to put into a reference for new patients
It sounds pretty simple, but the reality of treatment for head and neck cancer, stated in frank terms, I think would terrify new patients.
On the practical side, induction chemo will make you the sickest you have ever felt, despite the assurances of the oncology people that they have great medications that will ameliorate "most" of the side effects, my experience is such that they LIED! I had one round of induction chemo, 1 day of taxotere, 1 day of cisplatin and 3 days of 5-FU and I'd liken it to the worst stomach flu you ever had, the worst hangover you ever had, and the worst case of sea sickness you ever had.
From a radiation/chemo standpoint, the first is the potential for claustrophobia when they make the mask, and then clamp you into the table for 30+ trips through the 'toaster', the aspect of not being able to see what is going on, the omnious sounds of the IMRT head moving, the massive clunk of the power contactor picking up when the turn on the linear accellerator and begin toasting you.
They tell you that you will have discomfort, but they don't go anywhere near preparing you for what that sore throat will feel like. I compared it to the pain of a freshly skinned knee, dragged over miles of hot crushed glass, scrubbed with a hot rusty bottle brush, mopped with a couple of coats of fire and then packed in layers of library paste, and the impact is not just to your swallowing throat, it extends up into your soft pallet and down to the bottom of your neck (depending on where the disease is located).
Recovery is glacial, they told me that it would be 4-6 weeks before I returned to some semblance of normal, but it was more on like 2-3 months for functionality and then 12-14 months before I was back to normal
they tell you that you will have some impact to your salivary glands, but they don't tell you that the changes will be permanent.
they tell you that you will have long term impacts from radiation therapy, but they don't say anything about radiation fibrosis syndrome.
If you get an infusion port, they don't say anything about the possible complications from the port. I was told nothing about the potential for creating a life threatening blood clot in my jugular. I did research on it AFTER i developed a clot, the risk is just under 5%, but in terms of causes of a jugular vein clot, central venous catheterization accounts for 40%!
they tell you that you'll adapt after you complete recovery, but they don't tell you that you'll never be able to eat anything again unless you have a bottle of water that you can take small sips from as you try to eat even a simple sandwich!
I sound like I'm ranting and I am, they never let me know any of the darker side stuff!
the challenge in creating a reference guide is balancing the stark reality of treatment and recovery with the need to provide upbeat, positive information on tackling the beast and defeating it.
I am 5 years out from the end of treatment so hooray for me, and I'm grateful for all the help I received, but even more so for what I found on these discussion boards. It helps big time to talk with people who are or who have been through the mill previously.
I don't envy you the challenge that lies ahead.
That sounds exactly like what my husband has been going through! Very articulate!
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yensid683 said:
what to choose to put into a reference for new patients
It sounds pretty simple, but the reality of treatment for head and neck cancer, stated in frank terms, I think would terrify new patients.
On the practical side, induction chemo will make you the sickest you have ever felt, despite the assurances of the oncology people that they have great medications that will ameliorate "most" of the side effects, my experience is such that they LIED! I had one round of induction chemo, 1 day of taxotere, 1 day of cisplatin and 3 days of 5-FU and I'd liken it to the worst stomach flu you ever had, the worst hangover you ever had, and the worst case of sea sickness you ever had.
From a radiation/chemo standpoint, the first is the potential for claustrophobia when they make the mask, and then clamp you into the table for 30+ trips through the 'toaster', the aspect of not being able to see what is going on, the omnious sounds of the IMRT head moving, the massive clunk of the power contactor picking up when the turn on the linear accellerator and begin toasting you.
They tell you that you will have discomfort, but they don't go anywhere near preparing you for what that sore throat will feel like. I compared it to the pain of a freshly skinned knee, dragged over miles of hot crushed glass, scrubbed with a hot rusty bottle brush, mopped with a couple of coats of fire and then packed in layers of library paste, and the impact is not just to your swallowing throat, it extends up into your soft pallet and down to the bottom of your neck (depending on where the disease is located).
Recovery is glacial, they told me that it would be 4-6 weeks before I returned to some semblance of normal, but it was more on like 2-3 months for functionality and then 12-14 months before I was back to normal
they tell you that you will have some impact to your salivary glands, but they don't tell you that the changes will be permanent.
they tell you that you will have long term impacts from radiation therapy, but they don't say anything about radiation fibrosis syndrome.
If you get an infusion port, they don't say anything about the possible complications from the port. I was told nothing about the potential for creating a life threatening blood clot in my jugular. I did research on it AFTER i developed a clot, the risk is just under 5%, but in terms of causes of a jugular vein clot, central venous catheterization accounts for 40%!
they tell you that you'll adapt after you complete recovery, but they don't tell you that you'll never be able to eat anything again unless you have a bottle of water that you can take small sips from as you try to eat even a simple sandwich!
I sound like I'm ranting and I am, they never let me know any of the darker side stuff!
the challenge in creating a reference guide is balancing the stark reality of treatment and recovery with the need to provide upbeat, positive information on tackling the beast and defeating it.
I am 5 years out from the end of treatment so hooray for me, and I'm grateful for all the help I received, but even more so for what I found on these discussion boards. It helps big time to talk with people who are or who have been through the mill previously.
I don't envy you the challenge that lies ahead.
I'm at almost 2 weeks after my last radiation treatment. It was on 8/11/17. They did tell me that the pain would peak about a week or 2 after treatments end, but I had no idea how horrific the pain would be. I was also trying to think about how I'd describe how it felt to someone. It would be like eating a glass salt shaker and chewing it up and swallowing it. With the salt in it. Your description was pretty spot on too. I really don't think I could endure radiation of the mouth again to be honest. It's the worst pain I've ever felt and I would not wish it upon anyone! I also think that if I can do this then anyone can. I am getting some laser treatments on the sores in my mouth. I'm not sure if you had that option, but it was the great girls in the radiology department that told me about those after I was complaining about the pain. So far I havn't noticed much, but I won't have another until 9/5/17 and then once a week for 4 weeks after that. It's supposeed to really help with the healing process so I hope I notice more relief once those get back underway AFTER treatment being over. I was lucky enough not to have to go through chemo, but the radiation was pretty terrible. Hope things are going well for you being a 5 year survivor!
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I remeber it well
AS,
Much of what I heard from the doctors, while true, did not mean much to me as I had no real understanding of what they were saying. When I was told I would lose my taste or forget how to swallow I thought what are you saying?
It was logging on to this site ( before rads) which prepared me more than anything else. Because of this site, I drank 10 glasses a water a day and never forgot how to swallow (or get dehydrated). Because of this site, I had my magic mouth wash sitting pretty on the counter before I needed it. Because of this site, I had my salt and soda at the ready from day one; I had my recliner ready and all kinds of soft foods (which I could not stand).
If I had a recommendation, it would be to immerse one’s self in some preliminary searches here or just randomly reading threads. If you know what cancer you have and where and what stage, you might fine tune your search.
Depending on your mental state, you need to be careful of applying what you read to your cancer. Virtually, nobody gets all the side effects, but we are cautioned as if we will.
You can learn everything, you can learn too much or too little, but you are strides ahead if you work with what you got, stay nourished an hydrated, don’t get mad, stay focused and work the problem. That is coming from a stage IVa, scc, bot, 1 lymph node, HPV+ (surgery, rads & Erbitux), that only partially had the c _ _ _ kicked out of me.
Matt
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I agree with Matt about informing yourselfCivilMatt said:I remeber it well
AS,
Much of what I heard from the doctors, while true, did not mean much to me as I had no real understanding of what they were saying. When I was told I would lose my taste or forget how to swallow I thought what are you saying?
It was logging on to this site ( before rads) which prepared me more than anything else. Because of this site, I drank 10 glasses a water a day and never forgot how to swallow (or get dehydrated). Because of this site, I had my magic mouth wash sitting pretty on the counter before I needed it. Because of this site, I had my salt and soda at the ready from day one; I had my recliner ready and all kinds of soft foods (which I could not stand).
If I had a recommendation, it would be to immerse one’s self in some preliminary searches here or just randomly reading threads. If you know what cancer you have and where and what stage, you might fine tune your search.
Depending on your mental state, you need to be careful of applying what you read to your cancer. Virtually, nobody gets all the side effects, but we are cautioned as if we will.
You can learn everything, you can learn too much or too little, but you are strides ahead if you work with what you got, stay nourished an hydrated, don’t get mad, stay focused and work the problem. That is coming from a stage IVa, scc, bot, 1 lymph node, HPV+ (surgery, rads & Erbitux), that only partially had the c _ _ _ kicked out of me.
Matt
When my husband first got the "suspicious for SCC" diagnosis, I immersed myself in the internet. You do need to be careful because if you read too much or the "wrong" stuff, you can cause yourself unnecessary anxiety. So Google wisely. I found this site and spent numerous hours reading these threads and getting informed. I felt like I knew so many of the people here. I was very interested in the musicians (I think I read most of "T"'s and Brian Krashpad's posts) because my husband is a musician and we could relate. This site has been very informative. My husband stays away from these sites because they cause him anxiety, so by having a caregiver or friend read for patients, when things do pop up, they can explain and be prepared. I have noticed that in many cases, it is the caregivers and not the patients themselves on this site. So, I guess my best advice is to "Google wisely" and "Have a caregiver research for you if you cannot do it yourself "
-Chicklette-
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I have been thinking about this thread since it first appeared. I have been through cancer, as well as my husband. The one thing I would have wanted to know more than anything else is RESOURCES.
ADVOCATE: be your own best advocate, but if at all possible take someone with you. Think information overload!! Take notes at every appointment! Start a folder/binder. Things, sometimes important, are forgotten. Question will be asked later.
TESTS: what tests, exams, pathology, scans, are necessary for a treatment plan best for me
DOCTORS: what type of doctors are involved in my type of cancer?? Primary Care, Oncologist, Ear Nose and Throat, Radiologist, Surgeon, GI Surgeon. Which one(s) do I need to see first? For myself and my husband, the best doctor to see was the oncolgist. They ordered the extra pathology that indicated multiple types of cancer, their treatment plan decided the radiology choices, etc.
SECONDARY STAFF: Nurses, dietician, speech therapist, nurse advocate with insurance company, social workers. These are the frontline people. Side effects? ask a nurse. She may already know several suggestions. Our dietician in the radiologist's office was a great resource for us - but we had to ask for help to find her!
SUPPORT: Local cancer society and discussion groups, online discussion group, family and friends. ASK FOR HELP. Many are more than willing to help, but don't know how until you ask.
FINANCIAL ASSISTANCE: We took advantage of grant money to offset chemo copays. The oncologist had a specialist in their business/accounting office that was great! Drug company assistance, etc.
No matter what the individual treatment plan, these are the things everyone will need to know somewhere along the journey. I am sure I have missed many, so everyone please feel free to add to list!
Crystal
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Still here, still listening.
Still here, still listening.
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So Much
That it's a huge learning curve, but we all respond differently.
That no question is too stupid or dumb or irrelevant to ask.
That getting a port is like being kicked in the chest by a horse! - this too shall pass.
Its ok, if your not superwoman/man, just be yourself.
Take pain meds if you need them, people will not think less of you.
Rest! sleep is not for the weak, it helps you heal.
Nothing is normal anymore.
Enjoy the good things when they come your way, make time for the little stuff.
Never undersetimate your son who up to now has been pretty useless, he'll be a rock
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Different versions
What information you covey depends on the type of patient facing the ordeal. Some people rather not be bothered with the details - just do it, get it over with. Others want to learn and know every detail, option, outcomes - drink via the fire hydrant. Some want details but skip the scary bits. Everone is different so your assemblage should have all that is available but put into a few versions to make it most effective for the readers.
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