a new doctor, MO

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

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

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

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"

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 said:

Hugs!

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. 

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 said:

dear wolfen, i'm so sorry you

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

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

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