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new to cancer issues - how to organize?

9K views 23 replies 13 participants last post by  hubbub 
#1 ·
First...Thank you for having a forum open to search engines!

Approximately a month ago, we learned that my girl had a likely cancerous tumor. In my anguish and a desire for as much information as possible, I turned began searching, but found many forums are either closed for searches or difficult to search. Truthfully, I probably wasted more time searching for an open forum, but I wasn't thinking clearly at the time. Fortunately I stumbled on this forum and have been reading and searching since then and absorbing so much info which has helped me to understand what I'm being told by the oncologist and also helped me form better questions.

We went to the original surgeon who, after looking at her, said he would like to refer us to an surgical oncologist because of the locaction of the tumor (interior of leg, near vulva). Nearly two weeks ago, she had surgery to remove what was a hemangiopericytoma.

We go back this week to go over the histology report (they didn't get clean margins), remove staples, check on a few other things and then come up with a game plan.

I'm trying to keep all her medical info straight on my end, but still find that I'm flipping through things more often than I would like. I've got lists of medications/supplements (including dosing/duration), bloodwork, urinalysis, examination reports, etc. I wondered if anyone had any suggestions about organizing things. I've had things in envelopes, but am thinking about moving things to a 3 ring binder instead. Any ideas?
 
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#2 ·
Welcome to the forum. I'm sorry that your girl is facing the cancer diagnosis. I hope you get some hopeful news when you go back to the vet.

I wonder if an accordian style folder would be helpful in organizing your information. Perhaps you will be better able to determine what information will be helpful to you after your appointment.
 
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#3 ·
When we had a dog undergoing cancer treatments, we went to an office supply store and bought a 3 ring binder that had tabbed sections. We tried a folding accordion type first, but there were too many papers and not easy to access.

We titled sections:

Lab Reports
Vet Visits
Meds
Food/Supplements
Resources/Research

You may think of others. I send you positive thoughts as you go through this. I know it can seem overwhelming and hopefully you'll continue to be part of this board.
 
#5 ·
Im so very sorry to read your news...and wish you and your dog all the best...

It gave me goosebumps to read your post....
Some of us will agree that GRF can be a bit of a big dysfunctional family at times...but no matter the issue, when the chips are down...there will be people here to talk to...It is the best of what we can be as a group...

All the best...
 
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#6 ·
Thanks for the welcome everyone! :)

After my reading online and sitting at the hospital for 2.5 days and talking to other patients, I know that I'm incredibly fortunate. Even though it's a 2+ hour drive (university teaching hospital), I have access to a specialist and immense support from most of those around me. Before we proceed with anything, I want them to aspirate every little knot I can find on her.

My girl's 10 years old and already been though a lot, but this is our first cancer trip. Aside from wanting to scratch/chew the incisions (she had 3 total masses removed - thankfully 2 were benign), she's been a trooper and her mood hasn't changed.

I think I'm going to take everything to work with me and see if I can "test drive" some options from our supply closet during my lunch break.

And aren't we all a bit dysfunctional at times? I think that's why I'm zero-ed in on organizing things - I guess there are worse coping techniques - but between the envelopes/papers/medicine bottles/etc combined with a dog skidding down the hallway, I felt like I could be more improved.

The oncologist asked if I had a medical background (because of my research and questions), I responded that I didn't, but that I'd found a fantastic forum that had helped me generate good questions and make the best use of his time. :)
 
#7 · (Edited)
Thanks for the welcome everyone! :)

After my reading online and sitting at the hospital for 2.5 days and talking to other patients, I know that I'm incredibly fortunate. Even though it's a 2+ hour drive (university teaching hospital), I have access to a specialist and immense support from most of those around me. Before we proceed with anything, I want them to aspirate every little knot I can find on her.

My girl's 10 years old and already been though a lot, but this is our first cancer trip. Aside from wanting to scratch/chew the incisions (she had 3 total masses removed - thankfully 2 were benign), she's been a trooper and her mood hasn't changed.

I think I'm going to take everything to work with me and see if I can "test drive" some options from our supply closet during my lunch break.

And aren't we all a bit dysfunctional at times? I think that's why I'm zero-ed in on organizing things - I guess there are worse coping techniques - but between the envelopes/papers/medicine bottles/etc combined with a dog skidding down the hallway, I felt like I could be more improved.

The oncologist asked if I had a medical background (because of my research and questions), I responded that I didn't, but that I'd found a fantastic forum that had helped me generate good questions and make the best use of his time. :)
I'm so sorry you are dealing with this. I too found I was dysfunctional when we got word our boy had hemangiosarcoma. It bothered me so much that I couldn't organize my thoughts like I do for other projects. Finally after a few sleepless nights and angst filled days, I was able to write some questions down and I scheduled an appointment for myself with the vet who did our boy's splenectomy and we sat eye to eye as I asked and he answered. This vet spent over an hour with me answering all of my questions and giving me some great handouts to read about the chemotherapy drugs typically used for hemangiosarcoma and some other information. After we lost Barkley I went through all the questions and wondered what we would do if/when we are faced with a similar cancer scenerio. I wrote down my thoughts and questions and put them in a book I self-published detailing our cancer journey with Barkley, so I wouldn't forget and so I'd have them handy if ever we needed to deal with a canine cancer diagnosis. I just recently posted a thread sharing them. Just in case you missed it, here are some things to consider (or not) if you haven't already:
http://www.goldenretrieverforum.com...cancer-diagnosis-what-should-you-ask-vet.html
If you can contribute more questions please add them to this thread so we all can be better prepared and informed in the future.

Please keep us posted on your girl.

Edit: :doh::doh: I don't know why my computer doesn't go to the first post in threads this week, but I see now you want organizational ideas. I kept a binder with everything, but I also scanned everything into my computer into a special file on the computer to access.

Now that many companies are offering free cloud space you might consider putting your girl's medical records on the cloud for access anywhere. It's easy to organize files on it (I use the free Amazon cloud drive) and you can pull it up anywhere just in case you can't find that paper file you swore you put in the binder! I put all my Toby's medical and other important records in the cloud, based on each medical issue (abdominal ultrasounds, echocardiograms, routine labs, thyroid test results, opthamologist, CHIC DNA Databank registration, microchip information, rabies tag number and license, vaccination records, prescription list, supplement list, AKC registration). I actually used it at one vet appointment!
 
#8 ·
Gosh, I'm sorry you and your girl are dealing with this. Are you, by any chance from Nebraska and going to CSU in Colorado? I just saw your address "....the bluff" and know that CSU is about that many hours from "....the bluff" I know. If so, you're in VERY GOOD HANDS. You and your girl.

I have no experience with this type of cancer but I know that as you settle into a new routine, it'll all become second nature to you. I suggest keeping a journal - writing down things regarding her plus things regarding you and your feelings and things you're going through.

They don't know they have cancer - but we do. We can transfer our angst and fear to them and confuse them so it might help to write it down. I used this forum to do just that. Here's Duke's thread Confirmed - lymphoma
These fine folks whom I consider family now helped me through one of the most difficult times in my life. Duke was my heart. I still cry for him. Sometimes I still can't breathe thinking about him and missing him so. I'm so grateful I have goofy Coley to ease my pain.

I'm sorry you're going on this journey with your baby. One we never ever expect to go on and never want to but sadly sometimes we have to.
 
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#10 ·
I'm so sorry for you loss. I cannot imagine anyone else's pain and heartache, but reading the beginning of the thread made my heart ache for you.

As you mention, she doesn't know what's happening, so I work hard to get my emotions under control and give her nothing but positive energy. You are exactly right...when I'm worried, she's worried. Journalling is a great idea!

Actually our house is near the bluff side of a mountain in our town, but we aren't in CO. We were sent to Auburn University for surgical oncology. And this forum's community response, like the your personal example, also kept drawing me back again and again for searching (and watching videos when I needed a pickup).

Oh! My girl's named Hannah although she's got plenty of other nicknames.:)
 
#11 ·
Just wondering how the appt. went. Checking in...........
 
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#12 ·
Cautious, but Good News



Thanks for checking in with us Duke's Momma :)

I had hesitated to go into any of my concerns about the appt (it was yesterday) because I had found 3 other masses while I was warm compressing the three surgical sites and I was so worried about them. I almost feared that speaking about them would bring out my worst fears. Fortunately the three I found were just fatty deposits! So, they'll go on my list of things to watch.

We had a big talk with the oncology surgeon and they did a full exam again. He was incredibly disappointed with the report showing the cells extending outward to one of the margins.

The cancer was a low grade tumor. In fact, the mitotic figure was 1. We went over options (go back in, radiation, watch) and ultimately decided that our best action at this point is to do a monthly check at home and a recheck with the teaching hospital every three months. Ideally since we have an area to check monthly, if something comes back (which he felt was unlikely, but of course possible), we could remove it while it's quite small and would likely then be able to achieve a clean edge. With this route, he listed her prognosis as good.

Because of her age (10), the low mitotic number and the fact that they will examine her and do x-rays every 3 months, I feel very comfortable and at peace with it.

We got in late last night. Hannah slept for about 10 hours (I think riding in the car for nearly 6 hours total took it's toll) and I caught a few winks, then returned to work today.

Again I cannot thank those who responded to my small plea for sanity in the chaos and for this open/searchable forum. We've got some angels physically in our lives right now (great family and friends) and it was touching to have you all step up anonymously. *Duke's Momma, I'm going to finish reading your thread*

I plan to continue to hang out and properly introduce myself and Hannah to everyone as soon as I can find the cord to my camera. But boy, now I want a new camera and a video camera too ;)
 
#16 ·
I'm just reading this now, and wishing Hannah a speedy recovery. Yu are an amazing Doggie Dad. You and Hannah (and your family) are lucky to have each other. Prayers and good wishes for many more happy, healthy years to come. I am looking forward to seeing pics of your sweet girl!
 
#20 ·
#21 ·
hubbub, I am just now reading your thread also, sorry I missed it earlier. Since the passing of my old guy in Feb. from cancer I don't come to this section or the Senior section very often anymore.

Hannah is beautiful, she looks great. I'm glad to hear her surgery went well, enjoy the days with her. The Old Golds are very special.
 
#22 ·
Thank you. I'm not certain how well I'd be able to mange without her as she's my only pup. I caught my breath when I saw Taz in your sig. Hannah keeps that same look on her face most of the time.

When I was frazzled last night during the fireworks, I kept reminding myself that I'm glad I've got her to be frazzled over :)

I'm sorry for your loss.
 
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