The power of words

[Juls]

In Scotland.
I think you can ask for them. Only problem is it doesn't always go down well. So we are reluctant to "rock the boat". Have been on receiving end before when I queried something. Don't want to go there again! Think the GP might be an easier way to get some of the reports but not sure they get full updates. Haven't seen my GP for over 2 years but have been thinking of getting him to check blood & Vit D level, so this might be a way to get the info.

[Juls]

Just remembered - one of the other Ladies takes her notes to the toilet and reads them there before going back to treatment unit from Doctors office. Its the only time we get our file ( not supposed to be able to touch or read it - apparently it should be put in large envelope, sealed and taken back to ward by staff member. But to save time they let us take it as long as no-one sees us with it as they will take it from us! As I said "top secret") I haven't done this yet - would be worried about what I'd find!

[Andrea Barnett Budin]

That's unfortunate. Guess I'm lucky that my constant queries, which I started out (in '95 and '98) apologizing for but marched forward nicely anyway -- I was told that I was doing just what I should be doing. Asking questions. I had my lists with me.

Here, if I get a doc who says I don't need to know that, I am gone. That's the last time I go to him or her. Doesn't happen often at all, but it's a deal breaker.

I've been collecting my every report (blood, CT, whatever, including from my 2013 surgery was so in depth I was blown away) for 20 yrs. I have folders full.

It was ME who discovered my metastasis in '98. I compared my bld results ea x to the last and the one before that.

I noted a rising of my liver enzymes. Doc said not to worry. 3 mnths later, same discussion. What could be causing that? Anything. Your cholesterol medication. It's a very slight rise. But I was consistent in all my #s over the yrs and this was odd.

I asked for an ultrasound. Doc agreed he could ask for it based on the information (insurance companies are so fussy). The sonogram led to a CT scan cause they couldn't be certain of what they were looking at. Right. They KNEW. The CT scan led to a liver biopsy -- which was HER2+ bc throughout the liver!

My tumor markers were still normal. Didn't rise for mnths after. I caught it right off but it took 6 mnths to get any action, and that was b/c I asked for it. It just came out of my mouth!

Nurses are always telling me, Don't apologize, it's good that you ask. Mistakes happen. And they do. People are human. We are not perfect. Errors occur all the time. We must be proactive and watch out for ourselves, Juls, and all who are reading this. Please. You owe that to yourself.

Sending with love,
Andi

[Juls]

Totally agree.
To be honest - don't think I should have to ask. We should be given copy of all relevant reports. Then we could decide whether to read or not.
Months ago found out I had liver cyst. Onc just dropped it into conversation. We were talking about false positives etc. I was surprised that I had not been told about this. Her reply "not important!" Does make you wonder what else is not passed on!

[Pat94]

I am lucky. I am seen at a Comprehensive Cancer Center. All my reports, doctors' notes from exams, including the written information from scans are available online for me. I do wish they would put up the scan results before my meetings with the doctors so I could absorb the information, look up any terms I don't know, and formulate my questions in advance of the meetings. They don't want to do that though, they go online after. I don't always absorb everything up front but they have a way I can email my doctors. I have gotten answers back anywhere from 1 hour to 2 days later. My husband has always gone with me and takes notes. Together we determine the additional answers we want. Sometimes the staff respond back by return email and other times by phone. I am thrilled with their responsiveness.
If you aren't satisfied with their responsiveness and access, at least in the U.S., you can push to get your data. At the worst, you have to put your request in writing and wait a few days but you do have the right to have access to them.

[MaineRottweilers]

This is so counter to what is done in Veterinary Medicine, it is disturbing. When you leave your visit with you pet, you have a packet of paper with all DVM notes, nurse notes, copies of all imaging on a disk, all labwork that is complete. Leave with medications in hand, a list of what to follow up with, follow up appointments, contact information for a referral in case the DVM is not available (overnight or weekend)and detailed Ddx and treatment plan for next steps that any competent veterinarian will be able to follow. This is after you have had all the time needed to go over each detail with the DVM and again with nursing staff before your pet is discharged. We go over images thoroughly and labwork in detail. Surgical plans are discussed step by step. I am floored when my doctors don't mention results from imaging or just say labwork looks good. ???? Really? I want you to go through the imaging with me and show me what you think looks good or bad, I want to see the thought process that drew you to the conclusion you have made about my health. I swear, Veterinary medicine is far more detailed and compassionate, in a dozen ways, than its counterpart. I am training my team to give me what my Veterinarian gives me.

[Andrea Barnett Budin]

Yes, I like to read the report, as a layperson but as a person deeply concerned about the person whose report I am reading. I underline certain words and google. Then if I have further questions, they go on a list for me to ask the doc specifically.

By having copies of all reports I can see how my blood trends. I typically had all good blood at a certain point, but for my BUN and my triglycerides. I would ask what I can do to fix that. I yearn to be within normal range on everything!

For BUN they'd tell me to drink more. Well, I drink 10 glasses of water a day. So that's silly. I tell them and they don't have an answer. For triglycerides which keep coming up high for a decade, they really don't know what causes that. I have googled that and they really really don't know.

However, I started taking Coleus Forskohlii about 3 yrs ago, suggested by Dr. Oz for weight loss. I googled and it's been around for maybe 25 yrs. It's good for a wide array of reasons.
Since I've been on this supplement, I've noted that my triglycerides are suddenly totally normal!!

Juls, I also noted from CT scans (chest/abd/pelv) that I have a kidney stone sitting in one kidney along with some cysts. At first I was concerned about the stone cause I passed one in 1981 and never had one again. But I never ever ever want to have another!! It took me 10 wks to pass that stone the size of Texas. Refusing surgery as recommended as the only way to get it out back then. My urologist was grinning ear to ear when I handed to him. (I was told to drink, drink and drink and screen with a screener all day long. So they could retrieve the stone for analysis. I wanted to make it into a ring, I was so proud of having given birth to it.)

Apparently many if not all of us have cysts and things hanging out that w/o a CT we'd never know about. It is good to know your body. It's norms and it's oddities.

BTW, I am accustomed to same day response to my calls. Sometimes I now fax my question / reason for contacting the doc / office as they seem to be inundated with phone calls. I get faster responses that way.

And I have my doc's email which he checks all day long apparently and responds immediately to. I save those emails for what I consider emergencies, not abuse the privilege.

Sigh.

Keeping on top of your health is an art. And absolutely necessary. No one loves you more than you!!!!!!!!!

[Juls]

The strange thing is that they don't sugar coat it when initially diagnosed but don't tell you about other things ( in case you worry)! In the scale of things am I really going to worry about a liver cyst that's probably been there all my life! Mind you I could have had symptoms that were connected, if anybody had asked!
Blood tests here - don't include liver enzymes.
Traci - like you I would like to know how they decided on diagnosis etc.

[Andrea Barnett Budin]

Liver enzymes are included in: BUN, TOTAL PROTEIN, ALBUMIN, ALK. PHOS. ALT (SGPT), AST (SGOT), TOTAL BILIRUBIN.

I go line by line and check the nornal range for each. If I am just a little high or just a little low, I check my last blood work and compare.

I've discovered that my BUN is always slightly high. It's my norm. All my other #s tend to be pretty much the same within the normal range. If I note a variation I question it. Draw the docs attention to it next time we meet.

The reference range is great. They also tag H or L beside #s that are out of normal range, indicating high or low, to view at a glance.

Long ago, they didn't provide the reference range at the lab my doc used but nowadays, they are there.

I ask questions. I google. I compare the last blood work and the one before that and so on.

My thyroid #s are always on the low side but within normal range. Very low yet normal. One endocrinologist wanted to do more tests, ultrasound and biopsy. She looked panicky. Acted overly concerned.

I calmed her. I said, if you check those indicators through the yrs, I am always right there. It's my norm. I left that endocrinologist and found another.

Once they know you've had cancer, the rest of your life, every little thing is questioned and with alarm. I try to remain the calm one.

I DO NOT HAVE CANCER, I say slow and steady and with a smile. They stare at me. I don't care.

NO MORE CANCER.

Yup. I'm a crazy lady. ))

[Juls]

Andi - It is so frustrating that everyone jumps immediately to cancer . My Onc decided at one appt last year that a mark on my back was cancer. The reason - she thought it looked better! Had to tell her that I had CT and MRI reports saying otherwise. Now I'm not saying tests are always 100% but would think that numerous CT's and MRI's over previous 2 years might be considered. Can't say I was very pleased that day! Funnily enough never been mentioned again!! Once again comes back to "words".

[Andrea Barnett Budin]

I think they'll all busy covering their arses. Over-reacting, IMHO, to everything.

I'm 20 yrs out and it's not stopping.

When they found nodes in my thyroid area after that endocrin lady got all upset, she then wanted to biopsy. I said, No. She said, I don't understand, you're so vigilant about the rest of your body......

I told her, I DO NOT HAVE CANCER. I am fine. I am not biopsying everything they find. My blood #s are NOT alarming, b/c I checked and that is my norm!

Did go to another endocrin man (through cardiologist, long story) who is excellent, only does surgery but agreed to see me b/c he's a friend of my cardio guy. He happened to have a fellow w/him. He looked at each one of my apparently many nodes and explained each one to him, and me. See blah blah, that is nothing. See blah, blah, b/c whatever that is most likely benign and on he went, telling me at the end, not to worry. My blood #s were low but in normal range and all my nodes are nothing to be concerned about.

He told me to keep my immune system up, hearing my cancer background, which I do, with my supplements. He told me keep the inflammation down, which I do and don't let fear make me sick.

I liked this doc. He made sense, was well-informed, obviously bright and had a clear view of me as a person, not a thyroid or a cancer survivor.

[Juls]

Can you send him over here!!!

A few months ago I saw new younger Doctor. Usual Doctor on holiday. I wasn't fussed on seeing him for various reasons. So decided that I would be polite but not prolong the appt. Well I was totally disarmed. He had read file, looked at CT's (not just last one), told me how good the reports were etc. I left elated!
Unfortunately never seen him again!
What a difference in attitude!

[Juls]

Here we go again!
Have to moan!

Just had another scan. It's 1 week early this time & 10 days before next Oncology appt. Could they not have left me until week I am due at hospital - for goodness sake it's Christmas week!! Aargh!!
Andi - Singing mantra again until 31st.
On the plus side managed to get Vit D tested at last visit and had a peek at file & blood test results. Got phone out and took photo of them to study at home!! Discovered calcium low so I'm reckoning Vit D will be too.
Role on the 31st!

[Andrea Barnett Budin]

Hi Juls!

So are you saying you have no results and won't till 10 days when your next onc appt is?

ARGHHH is apt. Let it out. Then move on to singing mantra.

I have requested SAME DAY REPORT for over a decade. My onc works with me on this. If not same day, next day is surely reasonable for doc to get back to you, or ARGHHH 3rd day for absolute sure. HE HAS THE RADIOLOGIST'S REPORT NOW, NO DOUBT.

Just a courtesy. Cancer patients need their results.

I am glad you tested your Vit D. YOU HAVE THE RIGHT AS A PATIENT TO ASK FOR A COPY OF ALL YOUR REPORTS. I have them faxed to me.

I had CT last Tuesday. New DOC FAX # was given to Imaging Center but -- had to call doc's office 2 x and then Imaging Center. They told me if the doc doesn't get it today (last Tues.) he will get it tomorrow (Wed.)

I politely explained I am a 20 yr survivor of cancer. I always get same day reports. I verified that with the person who signed me in and with the tech.
I had a procedure last July and I am anxious to know if what they've visualized has spread. I don't know if I will need more surgery. I don't know if I will have to go back on chemo again.

She then responded like a human being and said, within the next 10 min. (it was 3 o'clcok, I left the Imaging Center at 10:15) I will go and check myself to see if the report has been faxed. If it hasn't, I will personally send it right away.

10 min. later my phone rang. It was my onc. He said he just got the report. He was on his way out, leaving for Pakistan. He gave me the bottom line. I asked to have it faxed. He said, Absolutely. And within minutes I had my copy of my report.

I don't mess around.

Today, or tomorrow, I will call the Imaging Center and make sure they have the doc's new fax # on record. I had scrawled it in large letters/#s on the script and had explained it to registration and to the tech. They understood. Apparently, the next person in charge of sending report to onc failed to note any of this and sent to the old fax #.

This is what is called LIFE. We have to calmly move along knowing mess ups have, will continue to, occur. Just cover all your bases. Not hysterically, accusatory or whatever, but like the human being you are. With a loving Spirit... Just saying.

Now you peeked at your report. I have done the same since I'm 30, pre cancer. I decide that after all it is about me, the patient.

Glad you took a picture. Good girl! To study at home. For good measure, ALWAYS GET A COPY OF EVERY REPORT THAT HAS ANYTHING TO DO WITH YOU AND YOUR LIFE.

Regarding CALCIUM -- I have read that the body can only absorb 400 mg of calcium at a time. I used to take 1200 at once.

NOW -- I take 500 twice a day -- CAPSULES, because I cannot swallow those gynormous tablets!

That's my best advice.

Let us know what your D is when you get it. It's really really important. Our organs are begging for more D3 all day. Sunshine isn't enough.

Merry Christmas for goodness sake!

Happy New Year, full of love and laughter, health and harmony.

Why are due at the hospital this week??????

Hugs,
Andi

[Juls]

Hi Andi
Thanks for your very quick reply!
Yes - officially no results for me until next appt on 31st! I know that reports usually take a few days minimum here and that they prefer to have same person read the CT & he is not in until Wednesday.
I've decided to call the hospital and ask for results on Wednesday late afternoon. They probably will not be to happy about this but going to try! Really don't want to wait 10 days for report. Especially at this time of year (also Son & Daughters birthdays in next week). Had hoped to have next appt postponed to 7th January but 31st is considered a normal working day here so appt not moved. I am on a trial so they are not keen on any change.
Good luck tomorrow when you call Imaging Centre.
Re Vit D - Live in Scotland so almost guaranteed it will be low. What's Sunshine!!

Merry Christmas & Happy New Year to you and all!

[Andrea Barnett Budin]

They won't give you results until doc has signed off. So hope that is done. Initialed.

My granddaughter's 11 bday is dec. 25. we're jewish. but the date is memorable. seeing star wars. and dinner. chinese, as that's all that's open christmas.

31st is not normal day here. IT'S NEW YEARS EVE!

what time is your appt???

I am only calling Imagine Center to try to get the doc's fax # officially changed
to prevent ongoing MIX UP ev 6 mnths!!!!!!!!!!!!

Imaging Center says they sent it, doc's office says they never received it. AND I, THE PATIENT, AM LEFT HOLDING MY BREATH.

MERRY. HAPPY.

Juls you don't have a signature, explaining your journey. I would love to see that.

It helps.

I know w/trials they will NEVER do changes. However, my experience with friends on trials, if you get a bad CT and they say WAIT and see next CT -- if it were me -- I would insist they change my chemo drug cause it's not working!!!!!!!!!!!

As a patient I would think we have that right, even if it means we're out of the trial...

[Juls]

My Specialist Nurse seems to be allowed to tell us the results. Because I am in a trial I get CT at another hospital. The reports are then delivered by Messenger direct to trial ward. This also makes timing erratic. Would have thought e-mail or fax but no - they are hand delivered! I might be out of luck on Wednesday but going to try. If not then I will have to wait till next week.

Appointment on 31st is at 9am and treatment not till the afternoon. So it is a long day hanging around the City. Usually not home till 7pm or later.

I think I misread the part about Imaging Centre - Thought you had still to get results clarified.

I have not put my journey info up yet - partly because it has been a bit of a mess with delays and mistakes.
The trial is for Perjeta (with Herceptin) and I have been on it since May 2013. The drug is not approved here yet and has been turned down 3 times already. I think because of expense. So if you go off trial for whatever reason unlikely to get it again.

On Christmas Day most Hotels and restaurants are open but difficult to get booked in the good ones. We were too late in booking. So like you we are going for a Chinese meal but on Boxing Day.

[Juls]

On my own & just got CT result. Not good. 2 bony lesions! Say they have probably been there since January!
Not sure what to do now!
Words!!

[MaineRottweilers]

Sorry, Juls. That's some rough news. You have my prayers. Keep us posted.

[Juls]

Thank you Tracy.
Can't get my head around -- "been there since January". I think this is hindsight!