Scan question

[naturaleigh]

When you ladies and gentlemen have scans do you actually get to see the results? I have never been shown any results. My Onc just always says everything looks fine and your blood work is good.

I would think I have a right to physically see the results, is that true?

Thanks

[Sheila]

I sit and read my chart from front to back every time I have chemo...it is your right to do that...if the nurses give you static, take it up a notch and talk to the Dr. or someone higher up.....I also get copies of all scans, bloodwork etc....

[Yorkiegirl]

I always look at my scans, I as well have copies of all my reports, blood work and any thing else.

[Blanche]

wow, i consider you all brave that can read scans and dr's notes. I wish I had enough courage to it, but I just can't even though my onc says I'm ned I still feel like I'll read something with my untrained eye and go to far with it. Blanche

[DonnaD]

Anita,
I always see my scans, blood tests etc. I asked after the first ones where done and now my Dr. just hands me a copy each time. Don't hesitate to ask for them, they are yours. I think some Dr's assume patients don't want to know. But there are many of us who want all the info.

With the scans in my hand I can then ask my onc. questions, like the many words and phrases in the report I don't understand.

Do what is comfortable for you. Give Boone a pat for me.
Donna

[Blanche]

anita, I like the idea of holding the file and then asking the dr to explain there rather then when I home. Thank you Blanche

[BonnieR]

Last week I had an MRI of my shoulder and requested a printed report. In addition to the paperwork they gave me a CD of the test. I had no idea they were putting these on CDs now!! It was great to be able to bring the disc to the consult with the orthopedic doctor for him to look at it and explain things to me. It moved the process along.
I think it makes consultations so much more efficient when I know I have the information with me rather than counting on someone else "sending it over" from another doctor's office.
But I would add a caution that it is important to be able to review the results with someone who can interpret them so we don't misunderstand what we are reading. That is probably one reason doctors try to "protect" us from ourselves. And sometimes they are reluctant to release the results until the doctor has seen them first. Which I understand.
But in the end, we have a right to see all of these if we want. Times have changed!

[DonnaD]

Bonnie, you are right. I forgot to mention I get a CD of my CT every time I go in. At first they were a dollar now they are free. This is extremely helpful if you are going for a second opinion.

[Mary Jo]

Nope, not me. I just listen to them tell me all is well and that's good enough for me....at least at this point. IF, this disease ever decides to rear it's ugly head again and scans showed it, I would most definitely want to see it for myself. At the beginning when there was visable cancer in my body (right breast) I did look at the actual PET/CT but that was the only time. Since then I've had another PET/CT, abdominal CT and a bone scan and only listened to my doc tell me all was well.

Mary Jo

[rebecca0623]

From a lawyer's perspective - HIPAA gives you the absolute right to see and have a copy of anything in your record. As somepne who represents medical facilities, just mention the dreaded HIPAA and you will get what you want (although they may ask you to sign a form). I can email you the HIPAA request form if you would like and/or need this. I have gotten copies of everythin so far and will continue to do so.

[Colleen007]

Like DonnaD, I asked my oncologist for a copy of the report after my first scan and now she automatically gives me a printed copy of the report after every scan. I recently (June) went to Dana-Farber in Boston for another opinion and went through the process of rounding up all of my scans on CD so that I could bring them to my consultation (I set everything up in a binder with the CD's in a sleeve with the report that went along with the pictures). My hospital provides the CD for free, so going forward, I will ask for the CD so I can keep my binder up to date for the next time I go elsewhere for another opinion.

As for bloodwork, my oncologist shows us the report every time I go for chemo (which my husband then logs in our notebook) and if tumor markers are done, we always get those results as well (actual numbers).

You do have a right to see everything...but, as BonnieR said, it is important to have someone (like your doctor or one of the nurses) help you interpret things so you don't get worried for nothing over something you may not understand.

Good Luck!

[naturaleigh]

I have in the past asked for copies of my bloodwork, but was not sure if scans fit in the same catagory. CT on CD, how cool is that!! Do you know if the PET are treated the same way?

Rebecca, I would love a copy of the HIPPA. Can I pm you my e-mail address?


DonnaD - Boone says "thanks so much for the pat". He and his older, but smaller sister Jinx (the cat), just can't seem to get enough of those!

[Patb]

The Doctor always explains everything and then
I say can I have a copy and they say yes and I keep
them all in case I should need a second opinion or
whatever, I have all the results. A few times they
have said everythings fine but then the results were
a little questionable and I question it and they say
its not worth worrying about?
patb

[Joan M]

Anita, There's probably not much use in seeing the scans unless your interested. However, it's always a good idea to get copies of your reports and to read the doctor's impression. And if you are curious about anything in the report than you can ask your onc about it. Joan

[Bill]

Anita, we always got copies of scan results and X-rays. You are entitled to those. We would read over them in the docs office, ask questions, and then carry them home, and reread them, and write down more questions for the docs next time we saw them. Often we would call them the next day with our new questions.

[ElaineM]

Aloha,
Yes. You can get copies of all your tests, including blood work, reports from every test or scan and you can even ask to see the actual films. It is a federal law in the U. S.
All you have to do is ask.
I learned alot by getting copies of everything. I look things up or ask about whatever I don't understand or need more information about. Sometimes docs don't think we are interested in looking at those things.

[goops]

I used to just hear the results but now my doctors have lap top computers and they can bring up the scans and actually show them to me.

[Believe51]

We always look, we always get a call from our nurse advocate before the appointment, we always get copies. Start a book for yourself and include all bloodwork; we have been graphing bloodwork and tumor markers for 2 years now, sounds like a lot of work but we can SEE better what is going on. We have every disc, every result in writing. Even if it is bad news we get to start working on it right away, good or bad. Best of luck my friend>>Believe51

[Lori R]

Again, based upon the consistently good advice of my sisters on this site, I recently started to back track with Drs. to obtain copies of all notes and scans.

I began with my radiologist and was VERY surprised at the level of detail that were in his notes. I actually found it reassuring that I had a Dr. who took notes on everything from my diagnosis to my religious beliefs.

I also feel more in "control", knowing that I will have everything neatly compiled in case I need them in the future. I owe a huge debt of thanks to a sister that wrote in and said it was a nightmare gathering information to support a disability lawsuit.

[Brenda_D]

I always get a copy of whatever scan I'm having, before I leave the facility. I get copies of all scan reports, but I don't usually bother with my blood work, since they have always been low for CA 27-29.
I have never got copies of my medical records from my GP, but may soon do that.