Well, I think it’s time to seek a second opinion.  Now that the chips have fallen and I know the ultimate diagnosis, it’s time to bring in as many views as possible so that I can make an informed decision and feel confident about it.  I’m not looking for the perfect situation or some elusive cure, not even saying I don’t have confidence in the medical professionals with whom I presently deal, but this is a pretty final diagnosis if there ever was one and I have to get the treatment right.  I think it’s the responsible thing to do.

First thing, two yellow flags have been dropped about the lack of communication among by health care team.  One was minor, a question on the part of my oncologist the first day that I met her as to why my surgeon wanted to see me after I spoke to her and not before.  “I don’t know,” I said.  “Ask him.”  But the latest error concerns me enough that I’m losing confidence.

As far as the surgeon goes, I am as confident as I can be in this person’s background, experience, and opinion.  Period.  One of the top 1% in the country, I like his style and his reputation.  And I want to stick with him.  But I am concerned that he apparently did not inform my oncologist that he knew that I was Stage IV and has, in fact, seen the reports and talked to me.  When I spoke to my oncologist I was glad that I could let her “off the hook,” so to speak, and tell her that I knew.  But it was clear that she didn’t know that.  And that seemed odd to me.  She had been back from her vacation for an entire day before we spoke–what, no email?  A voice mail?  Nothing over the four business days (five if you count the weekend) in which she could have been informed of this knowledge?  I find that odd.

So with that in my craw, my oncologist tells me that she’d like to get the lesion in my L4 vertebra and sacrum biopsied.  “To make absolutely certain.”  Here’s the deal: no one touches my lower back.  It is the most pain-sensitive area in my body and there’s an eight inch scar from a laminectomy there to prove it.  NO ENTRY.

Okay, she says, then she’d like to biopsy the suspicious lymph nodes in the chest.  Well, I have suspicious nodes on my right axilla as well, let’s biopsy them again too because they were all negative.  And, sure, while we’re at it, let’s biopsy my ass for shits and giggles.  Oh, and a thoracic surgeon would need to do this.

What the hell?  I get a PET/CT scan that confirms areas and now you want more biopsies “to make sure”?  To make sure what?  That I have cancer?  I’ll be damned if I’m going to undergo an invasive procedure that requires general anesthesia to confirm that the subcarinal lymph nodes in my chest say that I have cancer or, very possibly, are as negative as the axillary nodes.  Fuck it.  I cancelled the appointment with the thoracic surgeon.

See, I’m a project manager. I know how you set the goal, identify the challenges, meet with the stakeholders, establish benchmarks, and manage the process through to the end goal.   It’s what I do better than many people, and I don’t see that here.  What I see is a patient being referred to other professionals, but each office an island of activity.  And that is without any question unmistakably unequivocally undeniably unacceptable to me.

When I am told that “everyone here is totally vested in what you are going through” I need not only to believe that, but I need to see it in action.  So  I need to take even more time visiting more doctors just “to make sure” my treatment is being managed well.  The fact that I have to police my physicians pisses me off.  What’s next, I have to call semi-monthly project team meetings so that we’re all on the same page?  I have to be a pit bull advocate for myself and stay as strong as a steel beam so I can get through this shit.  And there’s the rub.  There is no getting through this shit.  It’s like luggage.  And it doesn’t have wheels.

There’s no one else to be my advocate and fight for me when I’m just too overwhelmed or too tired or too sick.  It’s just me.   And I hate it.

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8 Responses to Second

  1. On one appointment with my general, I mentioned that my back had been bothering me ever since I overdid it gardening a few months ago. I wanted some physical therapy for the back strain. Considering I have had life-long back problems ever since a disc laminectomy at L4-L5, I have no reason to believe my low-back pain has anything to do with cancer. But my general said she wouldn’t prescribe physical therapy until I had a BONE SCAN to see if the cancer had spread to my back. Yep, radioactive dye injected etc.
    I am pretty close to firing her. I know they have to be thorough but they are over-the-top with these tests. SOunds like you are in a similar “overkill” situation?

    • Scorchy says:

      There is overkill, but I also recognize the benefit of testing. I think what I’ve begun to put my finger on is that when my oncologist recommends tests she needs to know that I’m not going to automatically jump on it. I’ll need to educate myself, and then we can have a discussion–like that which will take place on Wednesday. The PET/CT I had no problem with because I understood what it was and why it could potentially change my care and my diagnosis; indeed, before it was even suggested I asked about it. My back pain has increased significantly in the left sacrum and it is likely that it is cancer that is the cause for it is sharper than the usual lumbar swelling and located in a slightly different location. What I do not agree with right now is that a biopsy will significantly change the course of treatment. Especially in the lymph nodes. We really have to balance what is needed to what is beneficial to us and to what is not really needed. It’s not an easy thing to do, as I have discovered. I also have to realize that my relationship with my surgeon, whom I like very much, is not really the most important relationship now. It’s oncology. Man, that isn’t just a different ball game, it’s an entirely different ball park.

  2. anomar13 says:

    I am getting my treatment at Mayo, and everyone on my medical team, from the GP in the breast clinic, to the oncologist (who was the second one they assigned to me, as the first one couldn’t answer a couple of my technical questions, and I believe wanted to get rid of me), surgeons, radiologist, etc. knows EVERYTHING right away. It’s all in a central computer system, and each caregiver has all the info right away, after any test, etc. So, IT IS POSSIBLE. I would never have believed it, as I have dealt with Northwestern Memorial Hospital here in Chicago for years, on behalf of my Mother-In-Law. NWMH is a highly respected institution, yet I was constantly dealing with lack of communication. Furthermore, the specialists seemed more interested in “curing” whatever was ailing “their” body part or organ system, and ignoring overall wellness of the patient. As far as being your own advocate, IT SUCKS. I have a husband, which is a great help emotionally, however, I am still the one who does the research, understands the technical aspects from the mountains of studies, and coordinates my care. I have done it for everyone else, now I have to do it for me, as I don’t have anyone in my circle of friends or family who can. When you feel sick, it will be harder, but KEEP IT UP! You are doing a great job, and don’t let any doctor convince you of something you feel in your gut is wrong. They are well educated, however, doctors believe in the odds (until they change, or a patent runs out on one of Glaxo’s top drugs, or they have lunch with a new pharma rep). Only you know what is best for you, especially if you are as well-educated as you seem to be. Don’t do the biopsies, unless they can tell you it will change your treatment. I doubt it will. If it is not going to change your treatment options, there is no reason to have one! If you like, I can send you links to numerous studies that show biopsies have their own set of problems, as well. STAY TOUGH, YOU’RE DOING A GREAT JOB! Never doubt your gut.


    • Scorchy says:

      Ramona, you rock! Thank you! Just the push I needed to keep moving forward; why we feel better when someone else says it sucks is not at all clear to me. But I feel better because it sucks for you too. : ) I have one set of records going to Columbia University Medical Center (Breast Surgery) and another going to Sloan Kettering. Second and third opinions pending. Plenty more to learn and manage. Thanks again.

  3. Janet Golden says:

    You are doing the right thing.

  4. Abby says:

    One more thing. You aren’t getting a second opinion because you don’t believe the diagnosis and are living in some alternate reality. You are getting the second opinion because you believe the diagnosis and want the best treatment. The best doctors are not necessarily the ones with the best rankings. They are the ones who know how to do their jobs while also knowing that they are dealing with people’s lives and show their patients the respect they deserve. Not so easy to come by.

  5. Abby says:

    Seriously brilliant! I’m so glad to hear you are still being you. Don’t let the fucked up medical world just bulldoze you. You take control of the situation. It’s your life. Absolutely brilliant! There is no reason you can’t find doctors who talk to each other, don’t want to cut you up like a piece of meat, and respect you. Bring it!

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