Treatment Decisions

Aren’t always clear cut. For some tumors things are very clear: there is a standard treatment. Protocols are well worked out and a high percent of patients do excellently. ALL (acute lymphocytic leukemia), Hodgkins Lymphoma, skin cancers, most basal cell tumors are some of those areas where great strides have been made. Other cancers – pancreatic comes to mind – are particularly nasty both in the way they so rapidly grow and in the fact that they are often discovered at an extremely late stage. Non-Hodgkins Lymphoma is no more a single disease than Breast Cancer is a single tissue type. It is those pesky details of cell line original, actual typing and cell behavior which determines what the medical community recommends.

I’m on the low end of the aggressive spectrum. No, wait – my particular form of lymphoma is on the indolent end. Tissue wise, same cell line and tumor that caused me problems in 1995 and probably has been very quietly and insidiously smoldering away for a couple of decades. It make a mistake in becoming a large enough mass to be noticed. So now I have to do something.

This leads to the question of what to do, and where to do it. I’ve mentioned Tumor Boards which review the path findings, the patient and make a treatment recommendation (in my case the surgeon said – nope, not touching that mess…..). The Sacramento VA group (affiliated with UC Sacramento) seems to be a bit more aggressive than the SF VA (part of UCSF for the purposes of this discussion). I can do research. I turned down everything 21 years ago because it didn’t make any sense to me. Why would I want chemo/rads and a bone marrow for what was essentially indolent disease (where the Germans recommendation was wait and see).

I find myself now in a not so dissimilar dilemma. Martinez is easy to get to, the nurses who run the infusion service are amazing. But there are a couple of catches. The waiting area is common with a couple of other services. The oncologist is solid, she knows and understands the military, she likes working in the VA system. Mostly, she is a solid tumor person – specifically breast cancer. If that was my issue – I’d be first in her line. But it became obvious to me today that she is not really comfortable with my turning down her recommendation of adding a chemo agent to the immune therapy. My desire to lead a normal life (fit it in with your plans to travel? Hello – we are not communicating well) doesn’t work as well for her. I’m looking to control with minimal risk to the rest of my body. I’m quality over quantity.

So if I take the choice of driving the 35 minutes to Martinez I am putting her in the position of having to support a plan she honestly doesn’t think is right. I am forcing her to practice substandard medicine in her view. I’m also afraid that I am going to continue to get pressure to change my mind/disapproval. She has a right to her professional opinion. I have the right to be a Nopetpus. (I don’t use the W or B words)

After Wed, depending on how it goes, I can also check in with the SF VA and tell them that I would prefer to come there for infusion therapy. The downside is the time and distance. Bus+Bart+BauerShuttle. Reverse that in the afternoon. The upside would be that the docs there were fine with my choice of only immune therapy. If something doesn’t go well – the infusion room is down the hall from the inpatient ward.

The two most knowledgeable people in my household (Dani & Alex) are all for comfort, confidence, and supportive staff. That being at potential odds with your provider is a “very bad thing.” And if nothing else, switching to outpatient at the SF VA, I could provide a cautionary tale to oncology fellows on how not to act if they ever become a patient…

(Hey – did you think I was going to entertain you with trying to find a parking space @ Costco on the way home?)


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About Holly

fiber person - knitter, spinner, weaver who spent 33 years being a military officer to fund the above. And home. And family. Sewing and quilting projects are also in the stash. After living again in Heidelberg after retiring (finally) from the U.S. Army May 2011, we moved to the US ~ Dec 2015. Something about being over 65 and access to health care. It also might have had to do with finding a buyer for our house. Allegedly this will provide me a home base in the same country as our four adult children, all of whom I adore, so that I can drive them totally insane. Considerations of time to knit down the stash…(right, and if you believe that…) and spin and .... There is now actually enough time to do a bit of consulting, editing. Even more amazing - we have only one household again. As long as everyone understands that I still, 40 years into our marriage, don't do kitchens or bathrooms. For that matter, not being a golden retriever, I don't do slippers or newspapers either. I don’t miss either the military or full-time clinical practice. Limiting my public health/travel med/consulting and lecturing to “when I feel like it” has let me happily spend my pension cruising, stash enhancing (oops), arguing with the DH about where we are going to travel next and book buying. Life is good!
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19 Responses to Treatment Decisions

  1. Clint says:

    You have to be your own advocate.

  2. Barbara says:

    Any chance of getting a insult at Sloan-Kettering? They live complexity….actually I meant to say “love” but they also live it.

    • Holly says:

      Not just no, but absolutely not.

      What I have is one of the most types out there. We have learned a lot in the last 20 years. You don’t ever do more treatment than is needed. You can always add, taking away doesn’t work.

      It really comes down to – do I, for convenience of transportation – put myself in the position of working with doc who is not happy with the treatment plan?

  3. Pat says:

    This sounds an awful lot like how things went the previous time, too. As I recall, they also weren’t very happy with your decision, and the numbers were in your favor.

  4. Holly says:

    The US was still over treating in 1995, and came around to the German way of thinking close to a decade later. Too many patients died from treatment, rather than disease. The immune therapies weren’t out till 1997. Most of the early research was actually done between Stanford and UCSF.

  5. Cat says:

    I am thinking it is a pity you aren’t in Germany – except that in the US you have family at hand.

    • Holly Doyne says:

      nah, not anymore. They are huge fans of bendamustine. I’m not. It is an alkylating agent,

  6. Alison says:

    I love that you’re taking how the Martinez doctor feels about it and her comfort level into account, even when that makes life harder for you in the transportation department. You’re a peach. And you know how I feel about great peaches.

  7. Mark says:

    Get yourself a handicap window hanging tag. Use it when you need to.

    • Holly says:

      Nah – the problem isn’t parking. The problem is the drive itself. It takes longer to drive than it does to take public transport. and the transport is cheaper. There are more cars at the VA then there are parking spots. The handicap slots fill first.

  8. Mary says:

    Sounds very wise to me. You’re approaching this very sensibly.

  9. Janet says:

    I think you have made the best decision. While Martinez is easier, why be at war with a doc? Also, it is in the end your decision and she should be doing whatever you want…

  10. Kathy says:

    “I’m on the low end of the aggressive spectrum. No, wait “ ?

    Sounds like you will be more comfortable at the SF VA. And the good news is that it is only once a week for a limited period of time.

  11. Ruth says:

    So, you find the right person who understands your needs as well as cancer-treatment. And if you have to go out of your area or to a non-VA hospital, go for it. It made all the difference for him, and it will for you, too.

    And on a much light note, it hit 9 deg sometime early this morning. I want winter to disappear. Feh.

    • Holly says:

      and we are whining here while it is still above freezing.

      Most people can’t live without “Something being done….NOW”

      Perhaps I think because I have been lucky so far I am entitled to stay that way? But then the stats say being “over 60” is not good.


  12. Bill R says:

    Thank you for your share. Seldom do I get an in site full account of a real situation and the decisions (sp) that may have to be made. Your a peach !
    Happy Hanaka again (sp)

    • Holly says:

      don’t worry about spellings – especially with Hannuka, Hanukah, Channuka etc etc. It is transliterated from a non-latin alphabet (Hebrew) so there isn’t a right spelling!

  13. Brad says:

    Transport hassle is temporary.

    You know how to use audiobooks.

  14. Donna says:

    hmmmm. dilemma for certain. But the doctor still needs to be flexible and give you choice if you so desire not to be overly aggressive. Your decision, and only you know all the circumstances, but I would opt for the easier commute, as this entire treatment will be quite taxing enough.

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