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A crossroads


SDianneB

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For the 3rd time in about 6 months, I feel like I'm being shuffled around from one doctor/test to another, just so the oncologist can buy some more time during which she wrings her hands, not knowing what to do with me.

First was last fall when she was clueless about the timetable for post-chemo/radiation scans and clearance for PCI. Second was the recent cholecystitis problem when 3 doctors just let me get sicker and sicker, and it took one whole month from the first test before someone finally did something to treat it -- one month. Ridiculous.

Now, it's here again. The last PET scan showed just about everything I have "lit up," and the pulmonologist, GI doc and others said "no way." They believe it's because of the stopped up bile duct and pancreatitis I had at the time, as well as the infection I had from all that. The GI doc said he figures it will all settle down in a while, once everything gets back to normal. So then, the oncologist orders a biopsy of my adrenal gland, then tells me that if it comes back negative, it might be negative, or it might just be that the exact spot where they placed the needle was negative. (Gotta love modern technology.)

So, why have it? If it comes back negative, she's the 2nd oncologist to tell me it won't mean a thing, so why bother?

If she suspects I have mets, then she needs to DO SOMETHING ABOUT IT. This "wait and see" mode is going to kill me.

Instead of having a biopsy on Wednesday, I'm going to see the oncologist and we're going to have us a little talk. It's time to be treated or I'll take my insurance and go elsewhere. I've had enough of being shuffled around from one doc to another and having one test after another, and no one knows beans about what all the tests show.

Aaaarrrrggghhh!!

Oh well ... will let you know if they throw me into the loony bin or if I finally get some resolution on Wednesday.

Di

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Di....gave you my thoughts by email....but dangitall, I wish you weren't having to deal with all this indecision. I like your attitude though, that it's time to get some answers.

You know...my onc refuses to do PETs. I've never had one. He says they "don't tell him enough"...which is his way of saying (I think) that there are too many false positives and it gets confusing!

That might just apply in your case, as recent pancreatitis probably would light up....eh?

Anyway, hon....I'm thinking of you...hoping you get some "debris" cleared away with your onc AND get the back up from your pulmonary guy that you need. Keep us updated...okay...and hang in there. I'm so glad you're feeling better physically....NOW we gotta get you there mentally...eh?

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Hey Di. I sometimes wonder where my mom would be right now if we did not educate ourselves and advocate for her health. In this day and age, you JUST HAVE TO. We have to ask the questions, we have to ask what treatment options are available. We have to ask why why why. On the flip side, we are receiving what I feel like is the best possible treatments. I hope that your oncodoc will have a heart to heart with you. I think it helps to just say "OK, Doctor, I AM WORRIED." AND THEN PROCEED TO TELL THEM WHY. Good luck. I hope that your talk makes you feel better. : )

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Karen -- these oncologists (I'm on my 2nd since diagnosis) order scan after scan -- I've had CT scans, PET scans, CT/PET scans, ultrasound, et al. You name it! One problem, IMO, is that the oncologists work off the reports of the scans and not the actual scans. The pulmonologist looks at every scan I have and ignores the radiologist report.

Don -- I'm with you. I'm on the 2nd oncologist since all this started, but it may be time for a 3rd. Third time's the charm, huh?

Addie -- been there, done that, huh. I think this past weekend I made a mental breakthrough when I sat down and went over a lot of things since my diagnosis last year. I just could not justify this needle biopsy based on all I've been told, and will not have it just so they can play CYA. I think it's time they become real doctors and actually treat their patient, or let me move on to someone who will.

Thanks for the supportive words from you all. I really missed this when I wasn't feeling like posting. You are, as always, the best!!

Di

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Di,

I don't know. I think I'm going to put a little different spin on this. I, of course, understand your frustration w/the doctors 100%, but I just want to put in my 2 cents about your reports and the biopsy.

There could, of course, be something different going on, but from what I've read and learned on this board, SCLC can not be there one minute and be there the next because it grows so fast. I think if it were me, I would have the biopsy. The doctor talked about a "negative" result, right? What about positive? There's a possibility it could be positive, right? I know that's not the possibility you want to hear, but I shudder to think what might happen if it is positive, and you didn't get the test done.

I hope I'm not confusing you further or scaring you, and I know this doesn't help with the switching oncologist situation, but it just kind of scares me that the adrenal is suspicious, and you might not have the biopsy done.

Love,

Peggy

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Peggy - this CAN be confusing! What happened was that I had cholecystitis that led to panceatitis. I had a large gallstone and an almost completely blocked bile duct. In the middle of all that and before they did a thing to treat me (mind you -- I was more yellow by the day) they ordered a PET scan. I was even told before I had it that "just about everything" will probably light up since I had all the inflammation. (I'd already had a CT scan that showed everything to be exactly like it had been before, plus an ultrasound showing the pancreatitis, etc.)

Sure enough, "just about everything" lit up in the PET scan, and we already know from some washings done during the ERCP that most of it was a false positive.

So, if she believes any of that is mets, then she needs to treat them, right? Having a biopsy that turns out negative means I wasted my time and insurance money, and if it shows positive, we're right back where we are today, except another week/10 days have gone by with NO TREATMENT.

That's what bothers me most with this bunch -- with every test and every referral, a week or 10 days goes by with no resolution. In the meantime, I'm just expected to sit around twiddling my thumbs while they wait on reports that don't tell them much of anything. So, they order more tests. The cycle repeats itself.

I know the reality says there can quite possibly be mets in there somewhere, but at this point, a biopsy isn't going to help unless the results are worthwhile, IMO.

Just my thoughts.

Di

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Well we are on oncologist #3....I think the chit chat is a good idea. Regarding the biopsy of your adrenal, it sounds like unless they get several samples you aren't going to get any real information anyway (aren't adrenals little tiny glands near the kidneys??? Yikes!). Hang in there...sounds like it may be time to go doctor shopping.

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Adrenal glands are small glands that sit atop each kidney. And please, someone correct me if I am wrong, but why would anyone consider sticking a needle into a gland that could dump mass quantities of adrenaline into your blood stream because of the needle stick? Wouldn't it be safer to remove the gland in it's entirety (also the whole thing would be tested and then you would really know if there was cancer or not)?

Di, did you ever go out to Vanderbilt-Ingram? I wish we lived nearby.

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Hi there,

I am in the same dilema. My ovaries lit up higher than my lung tumors on the PET. Everyone was in a tizzy about it. Saw 3 specialists.... yada yada yada.

End result, I had the big talk, weighed it all, heard it all and decided I was in charge of my health care, they are consultants and since they didn't have any answers-I would be telling them. They seemed relieved and agreed w/ me. I was told the same about a biopsy, it will only tell yes if yes, but no doesn't mean no, I choose to wait 6 weeks to be rescanned.

I asked the tough quetions about if it is mets and if I am now extensive w/ 6 weeks matter. I was told, not really. The tx will be the same, chemo.

I am mixed on the PETS. My original 2 showed the second tumor w/ the CT did not. This was very important because the chest radiation needed to know this. They also had a hard time finding the second chest tumor on the rad. sim, but because of the PET they found the hidden little devil and could shoot it too. No pet, it would have not been in the rad,. field at all.

The greatest feeling in the world is the CT/PET fusion when NOTING lights up. You know its a good day. However, w/ something lights up it must be investigated. The PET and CT's alone miss many things. The combination seems to be the new standard of care.

Good luck.

Jen

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Di,

A quick weigh-in on the biopsy - I'm with Fay. I don't think I'd jump on ANY biopsy/needle bandwagon without a new PET to see if all those "hot spots" cooled off. If there's possibility that test is totally wrong, I sure as hell wouldn't plan any treatment on the reading of it!

Hang tough, girl!

Becky

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Di,

If there is anyway you can go to Vanderbilt, I recommend going. Take all of your CTs and results and see Dr. Sandler or one of his associates. They were wonderful to us when we visited them last Fall. They run a very efficient, yet caring organization. I'll be happy to give you more information if you need it. Take care.

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Tina -- I've been keeping copies of all my records since day 1 -- even copies of ALL the scans on CDs. In spite of my deep aversion to the chaos at Vanderbilt, it may wind up with me going there, at least for a 2nd opinion.

I had an appointment there a while back, but didn't make it because of the Vanderbilt chaos I mentioned, but if it comes to it again, I'll get someone to take me and drop me off and not have to fight the traffic. (Traffic within the complex that is the Vandy Medical Center is comparable to 5:00 traffic on the freeway - no kidding. Except it goes on all the time - constant.)

Tomorrow is the day -- I'll see the oncologist and we'll have our talk, and I'll go from there.

Thanks to you all for your helpful comments.

Di

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Di,

That's what I did with Charlie--dropped him at the door. I was able to park across the street in a parking garage and walk through to the hospital and to the dr. office. It wasn't too bad.

I found the traffic to be manageable...just slow. We always got his appointments for like 9:30 after rush hour was over. That seemed to be the best time to fight the traffic. Praying for a good meeting with your dr. tomorrow. Take care.

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Tina -- you're going to laugh really big at this. (At me!) I live literally blocks from Vanderbilt. About 5 minutes drive. I crossed the street into the Vandy complex that morning, and it was like I was on I-40 at 5:15 p.m. That was in December -- and docs are notoriously busy then anyway, and that day was miserable with the rain, cold, etc. The parking garage you parked in was bumper to bumper. I saw 1 parking place for a compact car (I drive a minivan) and sat to wait for a big truck to try and squeeze in because spaces were virtually non-existant at the time.

In frustration, I called the office again and told them I was giving up -- was already 30 minutes late, and had snapped my last nerve driving and driving. Of course, that's when it occured to me that a 5 minute trip back home to have my neighbor bring me back and drop me off would have been way less than driving around for 30 minutes. DUH!!! Double DUH!!

Di

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....my onc wont do pep scans either....dont forget about "the secret" parking lot on top of the tower @ vandy.....you have to get to it from Broadway (or W. End..i get 'em mixed up)....there's a medical bldg there (drive around it).....i was always able to find a place to park there when my dad was getting treatments...... ....s

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Had the talk with the Oncologist yesterday. Decided (thankfully!) before I got there to tone down, be calm and not confrontational like I can be at times! :oops:

I told her I'd cancelled the biopsy, and after thinking things through, decided to come back to see her because I really didn't ask enough questions, or the right questions when I was there before. She wound up spending 30 minutes with me -- she was kind, caring, open and honest, and extremely helpful. It was a good talk, and I'm glad I went.

I went over everything I've already posted about here, and it's her opinion that the adrenals are fine, based on my history with them. She says there just isn't any evidence to support more chemo right now. She did say I was right about the negative biopsy report, but she was more interested in getting a positive if it turned out that way.

Ironically, one of the things I wasn't happy about was having to wait and wait and wait, yet I walked out of there agreeing to wait another 2 weeks -ha! Will have a CT scan (she wanted to wait a full 8 weeks after the last CT) on May 4th at 7:45, then see her just after that at 9:45. She says we should be able to tell if there is any change anywhere, and if so, we'll take it from there.

I think that this was about a half and half situation -- "they" (the docs I saw during the gallbladder crisis) were indeed pushing me from one to the other, but I wasn't really reacting or asking the right questions at the right time either. I was more or less just along for the ride, thinking this was "ok." With her agreement, I told her that I'd be pushing harder for help if a time came again that I didn't feel good.

Bottom line is that she made me feel much better, I know what she's thinking now and why, and I'm willing to trust her judgment on this and wait for the CT scan and see where we go from there.

I'm sure glad I did this, and I think she was too. We'd never really talked like that since I started seeing her. I told her my goal at the start was the same as it is now -- to maximize survival. I've not asked for miracles or a cure, just to maximize my survival. She thinks that's a good and reasonable goal.

Thanks for all the comments and support -- it gave me plenty to think about.

Di

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Hey, Di, sounds good. At Dave's appointment, if the reason for doing something (or not doing something) isn't obvious I always ask why. The onco doc at times seems a bit annoyed so then I call him on it - "is this an annoying question" or whatever, and then he grins and answers.

anyway, sounds like you made some good moves opening the discussion up and understanding what she's thinking. I'm glad.

by the way, how was the parking/traffic situation this time? I'm guessing better, maybe that helped mitigate your frustration levels?

We waited 2.5 hours to see the neurosurgeon Monday. We've never waited less than an hour to see that man, so this time I brought along the portable DVD player and a movie, along with headphones. Best thing I ever did, been wanting to see this movie for a long time! (When the Clouds Roll By, the life story of Jerome Kern, the composer or Show Boat).

OK, I ramble, just glad to hear you've got aomse answers and had great discussions.

And by the way, I'd really like to see you cured!

Karen

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Karen, I'd like to see us ALL cured. I'd like to see cancer kicked off the face of the planet -- all kinds of cancer.

Parking wasn't like Vandy at all, although it's getting a little tight at the parking lot where I go to see the Oncologist (Sarah Cannon Cancer Center). In fact, when I got into my car to go home, I had a note on the window calling me an idiot and telling me I needed to learn how to park, because s/he had to get into her car from the passenger side. Poor baby. S/he didn't know that I had the same problem trying to fit into that space! Oh well. There's one in every crowd!

Di

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