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a new doctor, MO

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

i've been a member here for about 2 years.  i recall many posts from you guys speaking of your 3 or 4 month check ups with your ent, mo or ro and I had no idea what the mo and ro meant, i just knew i didn't have one of them.  you also spoke of being poked, prodded and scoped by the ent at every 3 month check up.  again, i didn't get that and i wondered why.  well, it has been two years since my total laryngectomy and i've NEVER been scoped by my ent surgeon.  in fact i've had no scopes, no scans, no nothing. my niece who is an RN told me it is not my surgeon's job to follow up with me with that type of care.  She explained that he is a surgeon and that once the surgery area is healed, the surgeon's job is done.  i have another niece who works for a big cancer medical facility and sees cancer patients of all types everyday.  well, my two nieces started talking one day and decided i needed to see a medical oncologist.  i received a call telling me how they felt and the one niece wanted me to go see a doctor in her group.  well, i went today and the doctor was not happy that i have not been scoped at least EVERY THREE MONTHS.  but again, that's my fault because i have been seeing the wrong type of doctor.  the doctor i saw today wants me to see my regular ent for scopes.  the new doctor, Dr. David Waterhouse, ordered blood work and is going to review my scan from 10/1/12 and then order another one.  he wants to compare them to ensure there is NO change.  he also wants to see me every 4 months.  i feel so good that i'm finally seeing the correct type of doctor and i'm going to receive follow up care.  as i look back on my cancer journey, i realize i was not an active participant.  i clearly remember going thru the 35 rads but that's where my memory ends.  i don't even remember being told the cancer had returned or the plan to do surgery being discussed although i know it was.  i don't know why i don't remember these extremely important events in my life.  i was very ignorant of cancer and tx. i wish so much i would have found this site before my tx started and i'm thankful that others ARE finding it before their journey starts.  cancer is the worst journey i've ever taken and i've been more ignorant about that than anything in my life!  i cannot believe how little i knew or even still know.  i'm glad my nieces loved me enough to think about me and get me on the path to the correct doctor for follow up care.  i pray everyone knows up front that follow up care is very important and it isn't just the surgeon you should follow up with, you also need a medical oncologist.  please don't wait 2 years like i did.  I just had no idea and this is one time that ignorance is NOT BLISS!!  God bless you all and thank you all for everything you have shared over the years.  I've learned a lot and truly appreciate YOU!

God bless everyone of you,

dj

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

Nobody will ever take care of you, or know you, like you will...

If your MD's arent as pro-active as you think they should be, either question them, or get other opinions.

Usually..., from what I understand;

RO ~ Radiology Oncology (Oncologists)

MO ~ Medical Oncology

KUDOS to your nieces, and you for taking charge...

John

CivilMatt's picture
CivilMatt
Posts: 3345
Joined: May 2012

dj,

Don’t beat yourself up too much.  At different times during cancer I was on cruise control, just to get by.  Lucky for me my wife found this site before I started treatments, I was very afraid to investigate what I had, cancer is petrifying.

You are getting back on track and you will be fine.  For what it is worth, I scanned your avatar and you look ok to me.

Best always,

Matt

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

I was PETTING the avatar simultaneously..., no lumps or bumps.... Foot in Mouth

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

Hi dj,

You have been a long time member and made many many posts and I am certain you read many more. There is a lot of ongoing chatter about scopes and scans and frequency. If I may ask, and I mean this in a polite manner, just so others might glean some insight to how someone so active here not act sooner and ask and press for some answer to why no scans or scopes.

No matter who your doctor is, each of us is ultimately responsible to stay sufficiently engaged with the NCCN guidelines for standard of care. Maybe you can share your thought process on how this got by you for so long. I am sure others will take it to heart and put a big yellow sticky on their forehead to make sure those scans and scopes are marked on the calendar.

Thanks so much for sharing your experience. don

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

don, i'm not sure how this happened.  i have NO memory of my life for about 1.5 years.  i was out-of-it so to say and didn't know what i should be doing because i was no with it.  i can't explain it but i truly was NOT WITH IT.  my mind did not work or something.  i mentioned this to my docs recently but they just laughed it off.  if i wasn't in my right mind, i could not make decisions for my health because i did NOT know they needed made.  when i was finally back to being alert and aware of my situation, i asked about scoping and was told that is only done if a problem arises.  i dont' know what happened to me for that 1.5 years or why it happened to me but my memory and brian function returned May, 2013.  It isn't even as good as a blur up to that point.  i wasn't on pain meds or anything, that i know of, i haven't been told i was, so it cannot be from that.  my memory is blank from about jan. 2012 through may, 2013 is nonexisted.  nobody can explain this to me and i have given up on knowing why.  i've never read this happening to anyone here and i real ALL the posts.  my brain never told me to ask questions or insist on a scope, it just wasn't working well enuf to do that.  i wish i could explain this better because that would mean i have an answer as to why this happened but i can't.  i hope this helps, it doesn't help me too much but its the best i can do.  thanks, don.

dj

Ladylacy
Posts: 585
Joined: Apr 2012

Debbie, I don't understand how the doctors didn't follow up.  My husband's local ENT scoped him every month during treatment and then every other month.  It was he who found the original laynrgeal cancer, then did the second biopsy and trach (after radiation and chemo) and then referred us to a head and neck specialist for the surgery immediately after finding out the cancer was back.  This doctor did the surgery and saw my husband every month for the first 4 months, did scopes when we went to every 3 months  for check ups which included PET/CT scans.  All ordered and all follow ups by the surgeon.  Our local ENT still wanted to see my husband every other month during all this but after seeing doctors so many times, my husband decided just to follow up with the H&N specialist and the oncologist.  Thank goodness we had a great surgeon because it was him who found the cancer at the cervical of his esophagus and the reoccurrence and spread to his lungs.   Our H&N specialist even did the dilations that my husband needed.  We have been very thankful for our doctors during this time even though the outcome from all his treatment hasn't been what we wanted.  We knew nothing about cancer before this all started.  Yes my aunt had esophageal cancer and she would talk with me and tell me her experiences which was a great help to us.  Our youngest son had a kidney removed due to cancer and even though he lived a way from us in another state, we kept up with him and his journey which had a great outcome.  But as far as dealing with anything like this horrible beast on our own, we knew nothing going in but like I said we had great doctors.

Everything I read on this site and webwhispers was and still is a great help to us.  The one thing I have learned is that it is up to us to make sure we get the medical help we needed.  Too many doctors don't tell us what is expected and what we need to know.  One thing I remember is our doctors all telling us that it was vital that Joe had his follows up as scheduled and even gave us a timetable for follow ups, PET/CTs. 

Wishing you peace and comfort -- Sharon

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

Sharon, i'm sorry your son was touched by this horrible disease and praise God that he had a good outcome!  as i said in another post, my brain did NOT work so i didn't know i was supposed to being doing anything.  my wonderful caregiver did everything the docs told him to do  but if they didn't tell him we needed to f/u, then he just didn't know.   i wish i knew why my brain didn't funtion for the time it didn't but i think that's something i'll never know.  my mind is working now tho and that's why i'm finally getting things going.  i thank God to have my mind back and to be on top of things.  whatever happened to my mind before, i pray never happens again.  since no doctor can seem to tell me what happened to cause it, i wouldn't even know what to watch for.  well, its here for now so i'm just going to move forward.  also, i was never scoped during tx either.  thanks Sharon.  I hope Joe is feeling ok.

God bless you and Joe.

dj

katenorwood
Posts: 1898
Joined: May 2012

Just to put my two cents worth into this one.  First of all my surgeon was my primary ENT.  Seperate from my cancer center.  I have seen this charactor exactly 4 times in two yrs.  And never for scoping or prodding.  My medical onc. and my rad onc. never ever suggested I return to him during my post op  tx's.  I did eventually change clinics.  I was also suppose to get a nurse coordinator throughout this process....talked to her one time.  I won't make excuses for inept medical care ever.  Yes we need to stay PROACTIVE in our own care but geesh really ?

You have this one now.  And yes you're defineately more experienced from the knowledge of the group as a whole.  Anytime you want an answer, or are wondering why, how come I'm not getting this ..... ask away.  And Debbiejeanne just so you know....I think you're awesome !  Hugs sent !  Katie

wmc's picture
wmc
Posts: 1148
Joined: Jan 2014

I never had Rad, so I have to be checked every 6 to 8 weeks by "my surgen" who is an ENT onc and the head of the department at Stanford. I just found a local ENT that will see me, because of my TEP they did not want to treat me, until I told them they don't have to touch the TEP. I had to drive to Stanford and back the same day. Four hours each way and a long office visit over three hours somedays. Made for a long day.

So glad you are being seen and scopped as well. 

Bill

fishmanpa's picture
fishmanpa
Posts: 1164
Joined: Jan 2013

I'm glad you're being checked. I don't know how you got by all this time without questioning the practice of your doctor especially in light of all the posts here and how extensive your treatments and cancer was. I don't know where you were treated but the lack of follow-up on their part borders on negligence IMO. Where I was treated at Johns Hopkins, it was and is a team effort. The entire team, MO, RO, ENT/Surgeon and Speech Pathologist coordinate and meet over my case. I'm scoped, poked and prodded every three months for the first two years and the every 6 months until 5 years (God Willing). When I was told I wouldn't be scanned again unless necessary, I questioned it. While I'm not 100% comfortable with the reasons, I do trust my team. 

Hope everything is good with your tests and exams. Remember to be pro-active in your care from now on.

Positive thoughts and prayers

"T"

 

Hondo's picture
Hondo
Posts: 6238
Joined: Apr 2009

There is nothing better than to have family who care and love you. They are very correct as I am almost 8 years passed my last treatment but still see my ENT for scoping every 3 or 4 months. She has become a good friend and a pray answered as she is someone I can go to anytime and she understand my condition. What I like most about her is that when she is finished she will sit and take the time to ask if I have any questions. Most of my other doctors examine me and are out the door before I know it.

As always you are in my prayers

Tim Hondo

Grandmax4's picture
Grandmax4
Posts: 624
Joined: Dec 2011

IMO, I think God shut down your thinking during this difficult time and took over the reins. I read one of your posts that tells how down and depressed you were and being unable to talk was one of the main reasons.....that was taken care of, you now have a new Dr, that cares, and many friends cheering you on. I've been on this site about 2 years also, didn't find it until after, but, I love and appriciate all the caring, warmth, and knowledge shared by all. Chin Up 

KTeacher
Posts: 1094
Joined: Jan 2011

First, big hugs to the nieces for caring so much.  Second, I completely understand--last go around with Cyberknife I thought was 'only' for nerves in cheek.  When I went for follow up MRI and doctor visits, doctor was very excited about tumor aggresively dying.  "Tumor" I had completely blanked out that information from 4 months previous.  I do not recall the tumor mentioned.  I went back and looked at my notes, tumor mentioned.  My sister looked at her notes, tumor mentioned.  Oh well!  I was heavily medicated and not functioning very well at the time.  I do see my Stanford doctors regularly (scope, poke and prod), 6 months for radiation onc. (he's a new guy anyway) and I don't see the chemo man at all, in fact  he is no longer at the office with no notification to former patients.  He did not have much of a personality, great staff though.  All he did was look at bloodwork, I can have that done with my primary. 

wolfen's picture
wolfen
Posts: 1253
Joined: Apr 2009

Don't beat yourself up over this! I am so glad your nieces were proactive & stepped up to help. Although Ron had little experience with active treatments, we were told by the his original MO that the ENT would be the "quarterback" of the team. Because he dropped the ball on the first play, we joined another "team" at MD Anderson. There was no ENT involved there, so the surgical oncologist sort of became our team leader. We had a nurse coordinator who was associated with that department as our "go to" person. MD Anderson was very organized, but still confusing to say the least. It seems that each type of doctor had a nurse coordinator & ours was assigned accodingly as to the first doctor we saw. Hope that makes sense. So, I'm assuming, had things gone better, that this doctor would have remained our leader.

As ALL of us know, this is a very traumatic experience. For this reason, I think some of our brains just take a vacation for self protection. I know I constantly carried a large binder everywhere so I could record each appointment & conversation. There was just too dam# much information to remember. I can't imagine being the patient and remembering everything during the treatment phases.

I can say from experience, during which my brain took it's vacation, as later related by Ron, that trauma can really do a number on you. My father passed away a looong time ago, back in "77. Ron told me that I became a totally different person, doing & saying things I have absolutely no recollection of. Grief is traumatic & I am probably doing some senseless things now, which I won't remember later. The sad thing is that there is no one here now to hold my hand & guide me through.

Luv Ya,

Wolfen

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

dear wolfen, i'm so sorry you are alone and have nobody to hold your hand.  it just breaks my heart.  i wish i lived near you b/c i'd stop by your house everyday to give you a big hug and hold your hand for a time.  i wish so much that things would have gone different for your ron.  you are a very strong woman, karen, and i hope that if i ever face what you have that i can be at least half as strong as you and i know i'll get thru it.  how is jbg doing?  that poor girl is strong like here mama.  she is an inspiration to everyone and one hell-of-a fighter!  please let me know how she is.  i keep her and your family in my thots and prayers. 

i think you may be right about the mind taking a vacation, that's all i can come up with.  take care of yourself, karen, and know that i think of you often.  i'm sending you a great big cyber hug  ((((  0  )))) and i hope you can feel it.  thank you for your reply.

God bless you,

dj

wolfen's picture
wolfen
Posts: 1253
Joined: Apr 2009

Will be brief(you know how hard that is for me), so as not to hijack your thread.

JBG is not doing well. She has had another setback associated with even low dosage of chemo she has been trying to take since about Nov. Yet, another surgery is looming on the horizon as soon as she has been offf chemo for the required amount of time, probably about another month. I can barely keep track of all the surgeries, CT's, PETS, & hospitalizations. I think this will be surgery #7.

Unfortunately, the MO & the surgeon have never been on the same page since day 1. Surgeon says chemo caused current problem, MO says not. The surgeon has saved her life 6 times before, so my money is on him. The MO has tunnel vision & can't seem to remove his head from his a$$. She is not comfortable or happy with him & I hope she will search for a new one after this surgery.

The main thing that keeps her going is her faith, I believe. She is not ready to throw in the towel.

Take care,

Wolfen

 

 

donfoo's picture
donfoo
Posts: 1440
Joined: Dec 2012

It sounds like one important thing is to reach out and make sure you have a friend or relative who is willing to get involved and sufficiently knowledgeable to check in regularly with the survivor and make sure things past the "smell" test. It is frightening that what we are insinuating is we really can not trust our health system to ensure we do not fall into cracks.

Your case is extreme but we all suffer memory loss and get in the fog for various reasons and duration. it is so critical to have that support who is watching out for us until we are good on our own again. 

thanks for sharing, Don

 

Skiffin16's picture
Skiffin16
Posts: 8219
Joined: Sep 2009

DJ, the bottom line is that you are now aware, actively seeking medical assistance and doing all that you can..., and that is awesome.

Who knows what was going on during the time you mentioned, it could have been chemo related, denial, or any number of things. But it doesn't matter, what matters is that you are now taking care of business.

Thoughts and prayers your way ~ John

debbiejeanne's picture
debbiejeanne
Posts: 3023
Joined: Jan 2010

thanks, john.  i am definitely proactive now and plan to be from this point forward.  i didn't have chemo so the memory loss would have to be from rads, or who knows.  like you said, doesn't matter, i am alert and aware now and i am in control! 

thanks to everyone who replied.  i very much appreciate the support you guys give.  you are truly my family and i look forward to reading/helping/posting everyday.  you are all awesome!!

God bless,

dj

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