Friday, June 27, 2008

Oncologist Visit

Sometimes when you meet someone you instantly click. Maybe you can’t put your finger on why you like them but just know that a spark is there.

Other times, you meet someone who seems to rub you wrong and you may not even know why, you just don’t like them and avoid them like the plague.

Then there are those times that you just aren’t sure. They might be ok, but you might end up disliking them. So maybe you give them a chance, check them out a bit and maybe in the end they let you down or you become best friends.

That indecision is what I faced when I met with the new oncologist and his staff this past week. I just don’t know. A part of me wants to grab all my paperwork and keep searching and a part of me wants to wait and see what happens.

I did go ahead and let them schedule my tests that are overdue. So I’ll be going back on July 11th. I still wonder if that was the right decision.

The things that have me wondering if this is the place for me are:

1. They pulled up the national standards for my stage of cancer and that is what they will go by. This means no PET scans unless a CT scan shows an issue. CT scans are cheaper they say. Both of my previous oncologists used PET/CT scans and I fear something may be missed this way. These scans are the only thing that give me piece of mind because my tumor never showed up on a CT scan, nor in my bloodwork. National standards are fine but I would think that oncologists would make decisions on a case by case basis.

2. They fuh-reaked out when they found out my port hadn’t been flushed since January. They wanted to do it right away but couldn’t get approval. So now they think we’ll just see how the tests go then take it out. The taking it out is ok with me if my tests are ok, so this isn’t 100% bad. Just weird that they didn’t want to touch it now.

3. They don’t know if they can remove the port. They say that often their surgeons don’t want to remove a port placed by someone else.

These three things make me feel that they are worried about covering their own butts instead of taking care of mine.

4. They requested that I bring all my records with me yet they didn’t take the time to review them. They got “overwhelmed” by all the paperwork and simply talked to me, then requested more paperwork even though the info they wanted was already included in what I had given them.

5. Part of a normal oncologist visit is that they feel my neck, under my arms, stomach, groin, feeling the lymph nodes and check the ankles for swelling. This was done so quickly that I didn’t feel it was thorough. They did however ask if the node that was biopsied in August could be felt and I told them no, it was too deep and was only seen by the PET because it had uptake. So I’m not so sure the feeling the nodes thing matters on me.

6. They would not help me with my weight issues. They are happy I have a few extra pounds and were very adamant about it. Maybe a regular doctor will help me with that? I just feel like I’m cheating when I have more than one doctor.

There were some good things:

1. They will load all my previous PET/CT scans into their system and give me the cds back. This will make it much easier for me to change doctors in the future.

2. When I told them that my bloodwork, specifically the CEA (cancer marker, there‘s more info here) was always good, even when my cancer was so severe they replied with “Oh, you’re one of those people.” Which leads me to believe they are familiar with people like me. But also furthers my belief that other tests are needed. My CEA levels were never elevated and believe me I had a lot of bloodwork before my diagnosis, I was continually told, “Your blood looks good, your urine looks good, go home”. Normal CEA levels are less than 2.5, the highest mine has ever been was 1.8 and that was while I was on chemo, at tumor time it was .7

3. They see no reason I can’t start taking hormones again which should help with some of my issues. They do advise getting a gynecologist and I’m cool with that. The only reason I don’t have a regular doctor now is because the one I had never wanted to do anything. She always asked, “What did the oncologist say?” So I didn’t see the point in seeing her. Like my husband said though, it felt like once I was diagnosed with cancer she didn’t want to touch me. So, I will find me a regular doctor of gynecologist to take care of my bone density scans (I have osteopenia) and mammograms. Things my previous oncologist took care of as well.

4. They told me of a study conducted which showed that taking an aspirin a day helped colon cancer survivors have less recurrences. The problem is they didn’t think a specific amount was mentioned, so I have no clue how much to take but I will take one 81mg pill a day, it can’t hurt.

After writing all this down I am wondering why I am even going back. Who knows, maybe I won’t. You can bet I will be doing some more research. I am wondering if I could call a place and find out what their typical follow-up procedures are for my stage of cancer before ever walking through their door.

So, I am still frustrated. Maybe it’s time to drag my cancer books back out and study up again. Honestly, it seems like oncologists prefer little old people who just do what they’re told. They aren’t very fond of well educated people asking questions and seeking results.


These are my favorite cancer books. I think I have one or two more around somewhere but maybe I just checked more out of the library. I know right after diagnosis I checked a huge mound out from the library.

But anyway, the huge one, Cancer Survival Guide: Everything you must know and where to go for state-of-the-art treatment of the most common forms of cancer, describes each cancer and the warnings signs, gives advice on how to pick a doctor and places to find support, but the big reason I liked it is that it also tells you what to expect from chemo. So if I had a symptom I could refer to the chemotherapy area, scroll around and know that it was a side effect of chemo or something to be worried about.

The smaller book, There’s No Place Like Hope: A Guide to Beating Cancer in Mind-sized Bites, is full of little tidbits to help get through the day. From diagnosis to everyday life to children and insurance there’s a section for all you will encounter along the way. I found a bookmark left from those days of chemo so I picked one quote from those pages to share with you.
Choose to live each day fully, not merely to draw one day closer to death, for it is within the day’s journey that life’s treasures lie.


  1. I don't envy you having to do this research and make these decisions...though I know someday I might have to do just that. I think that last line is the one to focus on, for sure!

  2. Hi, Lisa.

    Wow. That's tough. I hope you're able to come to some sort of peace...

    I'm sure those books will be Google search terms to lead people to your site... The people who are helped by reading will be glad to have found you.

  3. Making that list of pros and cons really helps. I know you haven't actually asked anyone for advice, but #1 says it all for me -- no PET scans, and that's the only way your previous tumor showed up. If I were you, I'd stick around to get my overdue tests done and get that handy CD, but then I'd be outta there. At minimum, question them further. State that bloodwork and CT scans did not show your tumor, so you'd like PET routine scans. See what they say.

    Aspirin: The results are mixed. In one study, patients received 325 mg (standard dose) and had favorable results over the placebo. In a follow-up study, patients received 81 mg (low dose) and had favorable results, while those on 325 mg had no improvement.
    This article is old (2003).

    Oh, this article is much newer. It's not about a specific study, though. It just says, "Large studies have indicated that a full-strength aspirin daily will reduce the frequency of colon polyps and colon cancer by about one-third."

  4. Wow they do seem a bit dubious don't they? I would hate to think that a doctor is just referring to books and statistics and not individuals. I hope you make the right decision for yourself. Go with your gut instinct. Its usually to be trusted. Hugs xxxx

  5. anglophilefootballfanatic.comJune 28, 2008 at 4:30 AM

    I hope you figure out what you want to do. I think you need to be 100% comfortable with your doctor.

  6. Thank you for sharing the information. There is so much to think about and one really needs to research and take so many things into consideration. I would be insistent on them taking all the tests as you are not a typical case to be using stats as a guidepost. Good luck with your searches and getting the answers for and from the oncologists.

  7. This is a tough one. I think I'd see how the next appt. goes, get the test results, then make a decision. Instead of a 'regular' doctor, I'd get a gyno. She can handle the mamo's and osteopenia. Lisa, go with your gut, but don't be in a hurry, July 11th isn't too far off.

  8. Hi Lisa. I am so sorry that this doc didn't turn out to be everything you need. In a perfect world, you would feel very safe and secure in your treatments. I agree with someone else...if your tumor was only discovered by a PET scan, I would ask them to do one. Whether insurance will pay for it is another issue all together. Can you pay for it if the insurance won't? Can I ask, other than the fact that you have to travel, is there a reason you are not going back to Mayo for all your follow ups? As I remember, you were really happy with them...or did I forget something? If you did love them, would it be worth the trip to have the confidence that you were being taken care of correctly? At least through those first five years or whatever the window is? I'm keeping up with you and you are in my heart. Cathy, your Lhasa friend

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