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Talking Frankly about Living with Advanced Cancer

Cancer | Last Active: Jun 18, 2023 | Replies (508)

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@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

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Replies to "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..."

Vicky:
That is a helpful and good suggestion!
Teresa

I'm still feeling my way through this. I learned an important lesson very early though. Trust your doctor. The decisions are hard enough without having to second guess every single thing you've been told. I thank God every day that I found you all here at mayo connect and for my care team. The support from every single person I have connected with, the honesty from my team, the willingness to work with me on my issues - priceless for myself and my husband.
Vicky

@vsinn2000 That is good news, Vicky. Is your next appointment or treatment coming up soon?

Teresa

Tuesday. I lived through the sedated exam last Thursday.. A story all its own. Lol. I meet with radiologist and do the simulation (?) for rad therapy. Not looking forward to it at all. Dignity, personal space thiNG is full blown again.
Vicky

@vsinn2000 Vicky: I can only imagine your thoughts/fears about loss of dignity and personal space! I hope that all of the medical people attending you on Tuesday will be extra kind and thoughtful so you can get through this with as little anxiety as possible.

Blessings,
Teresa

Teresa,
I have simply got to stop looking at the internet. Do you know of anyone who has had this type of radiation? I'm totally panicked by images of internal treatments, speculum being used, I can't do it. I. cannot. Do. this.

Oh, Vicky, @vsinn2000

I can certainly understand your anxiety and panic. I'm also the type of person who, if I know what to expect, it makes it easier to approach. Anticipation of an unknown event is probably far worse than the experience itself. (Does that help just a little?) Yes, keeping off the internet might be good plan for today.

Unfortunately, I don't know of anyone who has had any experience with this type of cancer or treatment. It is rather like the NETs that I have had - there is little information out there.

With that said, I pray that you will be able to experience some peace. Do you have any anti-anxiety meds to help you through this process tomorrow? Are you expecting any sedation for the procedure?

Keep in touch - I prayed for you first thing this morning when I woke up.

Teresa

Teresa,
Thank you. It calms me reading your words. I have anti-anxiety meds, I suspect I need something stronger. I don't have a clue what to expect, so that ratchets it up almost beyond control immediately. Unfortunately. And just because Murphys law runs my life, we blew a tire yesterday so my husband is out trying to find a dealership that has my tires in stock. BUT at least we weren't going down the interstate when it went so that's a plus. So my day is already a mess with "the plan" changing from a morning to pack the car and get ready to a morning of chaos. I suppose if we are going to have a lufe changing medical condition we may as well have something we can learn from. I thank you for your morning prayers! They are much appreciated!
Updates later,
Vicky

@vsinn2000 Yes, this next appointment will soon be over. I am glad that your tire blew before your trip and not during. I guess we have to be thankful for small blessings. 🙂

Teresa