• Frustrated and Sad

    Asked by LiveWithCancer on Friday, August 11, 2017

    Frustrated and Sad

    On Monday, I met with my Nurse Practitioner, since my doctor is out of town. We discussed options for treatment of the growing tumor in my supraclavicular lymph node.

    While they didn't ever suggest radiation, I did. I wasn't a candidate for radiation when first diagnosed, but currently the only active tumor is (relatively) easy to access and not too huge. It made and makes great sense to me to radiate it, kill it, and move on.

    Fortunately, I saw my NP and not my doctor. She listened to me and she schedule a rush visit with radiation oncology.

    I went to see radiation oncology on Tuesday. Loved the doctor. Learned I am a candidate for radiation. He feels completely confident he can zap the tumor with no long term side effects for me.

    All good!!! I get home and send a message to my medical oncologist, telling them the results of my visit with the radiation oncologist.

    Now, I feel like I am in a tug of war. I am the tug.

    Contact below

    41 Answers from the Community

    41 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Contact below???? I hate my phone and its idiotic spellcheck. Cont below...

      My medical oncologist, who is also a researcher, doesn't want me to have radiation. He wants me to continue on Opdivo, which is no longer controlling the growth of the tumor in my neck, for a few months, while we wait for some new trial that's coming.

      See, if I get radiation, all of my cancer will be gone or inactive. I won't qualify for a trial because there will be no cancer to watch.

      And, I ask you, what's wrong with that??????

      So, my doctor, who I have loved and have recommended and praised and trusted ... wants me to walk around with a growing tumor in a large lymph node for several months while we wait on a trial for drugs that may or may not work on me.

      This would be (somewhat) palatable if radiation wasn't an option. All it is doing to me right now is depressing me and making me look at my doctor in a whole new light.

      I always thought he would do what is best for me as a person. But, now I feel like he is wanting to do what is best for his research ... and since I like to participate in clinical trials, he wants me around for this one that's coming up.

      This is really long, but I can find no reason why I should not continue on with my plans for radiation and killing the active tumor. I might end up having to leave an awesome 4-year relationship with my medical oncologist over it, but in the end, I am the person who cares about me most...

      Does anyone here have words of wisdom for me? Does anyone follow my medical oncologist's logic?

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Hang in there Live With Cancer. I had to fight my medical oncologist every inch of the was not once but twice. My surgeon showed me the emails he sent to her and we had a good laugh. If your radiation oncologist thinks this will work, for all means go for it. Or step out of the circle and get a third opinion. Pray to make the right decision.
      I will also pray

      almost 4 years ago
    • lh25's Avatar
      lh25

      I agree with thinking about a third opinion. And yes, you are the one who has to advocate for yourself. Did you ask the MO directly what waiting would do for you?

      almost 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Another opinion might not be a bad idea. Or simply go with your gut, which is an INCREDIBLY scientific way of making a decision. LOL. But ya know, sometimes you gotta do what you gotta do. And I understand losing faith in a doctor. If you don't have faith, it's hard to have trust. Does the radiation guy think the tumor will grow too big if you wait the few months that your medical guy wants to wait? Just something to think about when making your decision.

      almost 4 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Knowing your current treatment is not solving the problem and there is a good possiblity of a resolution through radiation seems iike a no brainer. I also am puzzled by your doctor's hesitation for the radiation. No one wants to feel they are a guinea pig. You have a chance to grab the brass ring and possibly rid yourself of the cancer, like you say " what's wrong with that?"

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      The radiation oncologist said the tumor could double in size and he can still successfully radiate it.

      My question is, why would I wait???? I have the opportunity right now to get this tumor gone. It is in a lymph node. It makes NO sense to leave it for any longer than absolutely necessary.

      My medical oncologist is out of town until week after next. They are IGNORING all of my questions (like, WHY would I keep on doing a drug that isn't working to wait on some trial that might not even work??) And just saying to delay.

      Well, my decision is made. Radiation happens next. If I have to find a different medical oncologist to treat me, then that's what will happen, but I am.not walking around with a live tumor when we can (relatively ) easily get rid of it.

      I can think of NO reason why that isn't the best plan.

      I don't mind being in clinical trials, but I am NOT willing to not look out after my own health just so I can be in a trial. That would be stupid.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thanks, everyone. This is bothering me most because I feel like my medical oncologist is seeing me as a subject and not as a person. I would have argued to the death that wasn't the case until now.

      I am 1000% comfortable with getting radiation and either continuing with Opdivo (research shows immunotherapy is even more effective when combined with radiation) or just going on maintenance until tumors start growing again.

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      I am so glad you made your decision. I pray that it works for you.

      almost 4 years ago
    • Bug's Avatar
      Bug

      I'm very glad you are at peace with your decision. That sure makes a difference in how we feel, doesn't it? And we are beside you 1,000%!

      almost 4 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Good for you! You HAVE to do what is best for you. After all, you are the only you you've got... Or something like that.

      almost 4 years ago
    • lh25's Avatar
      lh25

      I'm glad you made a decision for yourself, and feel good about it!

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      Live With Cancer, don't feel bad about your medical oncologist. He will get over it. And he will learn from the experience. These Dr.s have very big egos they wouldn't make it through medical school if they didn't. My former Dr, you remember Dr. Doom. He did not get along well with other oncologists but he worked fabulously with other specialists. Well he has finally found his true niche in the medical profession, He got a grant from the VA to do research. So your medical oncologist will most probably benefit from your decision.

      almost 4 years ago
    • Bug's Avatar
      Bug

      I echo that, BoiseB.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Well, I hope so, @BoiseB. It is like I told my nurse practitioner. I was feeling bad/sad ... almost like a traitor ... when I was looking at clinical trials at other facilities. I love my hospital and their staff. But, in the end, I don't love them more than I love me and my life.

      It is pretty much just that simple.

      I do hope it won't cause a rift between my medical.and radiation oncologists. Or, that I won't have to go elsewhere to get it done.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      But, I will do what I have to do. I can't fathom an argument that makes walking around with a growing tumor waiting on something that might or might not work to happen take precedence over getting the darn thing gone.

      almost 4 years ago
    • BoiseB's Avatar
      BoiseB

      There is nothing in the relationship between you and your medical oncologist that time won't heal. The trouble with specialists is they develop tunnel vision particularly the exceptional ones. Sometimes it takes a patient to pull them out of the tunnel.

      almost 4 years ago
    • Ejourneys' Avatar
      Ejourneys

      (((Hugs)))
      And what @BoiseB said.
      It *is* sad when someone who has been at your side for years in a life-and-death struggle suddenly stops acting in your best interests. We invest in our relationships. I am heartened that you know what you want and need and that you are advocating for yourself, but that betrayal still hurts.

      almost 4 years ago
    • Carool's Avatar
      Carool

      I'm glad you have the option of zapping the cancer now rather than POSSIBLY getting rid of it later. Maybe you could tell your medical oncologist something about how you feel, if you have the time and energy to do so? In any event, as BoiseB said, he will get over whatever he feels now.

      almost 4 years ago
    • Luie's Avatar
      Luie

      Hi LWC,

      I'm glad you made a decision that you're at peace with. I would've chosen to have the radiation now too. I certainly wouldn't want to wait for a trial if I knew something else could help me now. You are your best advocate and there's no need to feel like a traitor. You like the RO and if you need to find a new MO, so be it. Maybe the RO can recommend someone if needed.

      Trust yourself. Sending prayers.

      Luie

      almost 4 years ago
    • GranEM's Avatar
      GranEM

      Hi LWC - I agree with Luie - you know what is best for you. You are not new the process - you have made good choices to date - continue to trust your gut - as grandma would say - your gut is your soul - listen to it. Angels keep you safe - EM

      almost 4 years ago
    • Lorie's Avatar
      Lorie

      LiveWithOUTcancer, I think you're looking at situation objectively. Don't worry about Med ONCO feelings..you're life more important. You sound like one who doesn't want to upset the apple cart and hurt people's feelings. I used to be overly like that. I once switched doctors in the same practice and they're still together and the new one sees me happily and they take my money.
      Lorie

      almost 4 years ago
    • Dianem's Avatar
      Dianem

      Just realizing now all that has transpired for you. Busy lady. Seems that you are making the right decision. If your relationship with your mo is meant to continue, it will. If not, you will move on. You are so strong and such a role model for advocating for yourself. We can all learn from you. Keep strong and God bless.

      almost 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      LiveWithCancer, I think everything you've said sounds logical and like it makes perfect sense. However, since you've thought so highly of your doctor previously, I would ask him if there's anything he hasn't told you that's influencing his opinion, since you said he avoided your question. I would also ask the NP the same question.

      If you don't find out anything new, you could get another opinion or go ahead and do what you think is best. I'll pray for you to be at peace. Wishing you the best.

      almost 4 years ago
    • wmsavs' Avatar
      wmsavs

      I agree with BarbaraBham, perhaps your level of confidence in the MO has deteriorated since his decision conflicts yours and the NP. A second opinion with another colleague even of the same team may be warranted. I question how this MO handles disagreement?

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Part of, or maybe most of, the problem is that the MO is out of town. I think he has been out of town ever since I decided to explore radiation. So, I haven't presented my arguments directly to him (except through MyChart messages), nor has he given me his ideas. We are going through his nurse, who has his best interests at heart, but may not know the reasons why. So, rather than trying to respond to my questions, she just reiterates the doctor's preference for no radiation at this time. (The nurse and Nurse Practitioner are 2 different people.)

      She implores me to wait until he returns to town week after next. I see that as more time passing while nothing is being done. She wants me to get started back on the Opdivo right away, but I don't see the hurry since it quit controlling what I currently call Wayward Tumor.

      There is, however, new research supporting the fact that immunotherapy combined with radiation makes the immunotherapy work even better than without radiation. I say we study that :).:) even if there's no trial like that at my facility. (There is one at Houston Methodist. I tried to get in touch with them, but my email bounced. In the meantime, I spoke with the radiation oncologist here and felt comfortable just staying in the system that I know and that is much close to home, so I didn't try another method of getting in touch with them.)

      Thanks to everyone for your feedback and thoughts! They are appreciated! Very much.

      I am going on Wednesday for the simulation or whatever it is called to prepare me for radiation. I hope I get a chance to speak with the RO then. He seemed pretty excited about the double immunotherapy trial, too, and was in no hurry to take a viable patient from my MO by killing the cancer when we saw him last week.

      I want to ask him what he would do. He had left it with the fact that he can effectively radiate the tumor even if it doubles in size ... my question is why I would want to let that happen, rather than just getting rid of it now. My life is much more important to me than being a trial subject.

      I am fine with being a trial subject, but not when I am potentially putting my life in jeopardy.

      @Lorie, loved the emphasis on LiveWithOUTCancer!!! :) :) that sounds fabulous!

      when I chose my name, I was thinking positively. Because of Opdivo, my cancer and I have co-existed just great for 4 years. I was living life to the fullest (still am) and my name was supposed to denote that cancer is not holding me back from living. I don't think others have seen it the way I was thinking when I came up with it, though. Nevertheless, yours sounds better, no matter what :).:)

      almost 4 years ago
    • banditwalker's Avatar
      banditwalker

      I've had specialists who act like I'm not as "important" since treatment ended. And yes, it sounds like you have a better grasp on this than the professionals.
      I can't really add anything more to what you can/can not/should do about the current situation than others have already mentioned.

      I do want to however point out how this is such a great example of how we, as patients, can and should be in control of our own destiny. With just a little research we can help the doctors figure things out and raise questions they may be too busy to think about. I believe in my heart of hearts that most doctors truly want to help but if you don't act like you are involved and ask questions, they will not be as prone to go all out, so to speak.

      You have my profound respect for this whole journey you have traveled and the guts it takes.

      almost 4 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      I think you have proven how well you " live with cancer" to all of us on WhatNext and beyond. You have given yourself to clinical trials in the hope that you and others would be helped as a result. Your doctor does NOT live with cancer he treats it. You are your best advocate .

      almost 4 years ago
    • cards7up's Avatar
      cards7up

      You do what you think is best for you, not what your onc thinks is best for it seems him/her. I'd go with the radiation and save trials for when or if you ever need one again. And don't feel bad about it. Just tell them this is what you've decided and want to do.

      almost 4 years ago
    • Lorie's Avatar
      Lorie

      Live, thats the key word. I see your point and get it. I was stumped on picking a name so just used mine.
      So glad you're going for radiation and you can deal with MO when he gets back

      almost 4 years ago
    • RubyFaye's Avatar
      RubyFaye

      @LiveWithCancer, I feel as you do. Why wait for something that may or not work for you or may not even get to try it, when there is something that can eradicate the cancer.

      I will be praying for you.

      almost 4 years ago
    • SandiA's Avatar
      SandiA

      I am so glad you made the decision. You will be in my prayers.

      almost 4 years ago
    • jhale17's Avatar
      jhale17

      I agree with the comments above that you are the one to decide on your treatment. I am sure your RO can remove the current tumor. I suggest you ask these question of your MO: Will radiation for removal of your current tumor “cure” your cancer or does he expect you to have additional tumors?

      - I am sure your RO can remove the tumor but does that result in a “cure.”

      - Does having the radiation hinder the effectiveness of the clinical trial?

      - How fast is the tumor growing and how will that growth affect you while waiting for a clinical trial?

      - Will waiting for a trial hinder later normal treatments?

      - Has a name been given and is there information on the clinical trial?

      Here is the story of one wait-times I went through. In the third of my four occurrences of NHL-DLBCL I agreed to what turned out to be a wait-time of six-months in order to get a safe biopsy.

      In December 2006, I was in remission and in for a follow-up CT/PET. It showed an uptake in a few enlarged lymph nodes in my abdomen near my spine. My OD ordered a biopsy. This was to be done in the hospital with the assist of a CT scanner. A doctor there, while viewing the locations, found that he might have to go through something to get to one of the lymph nodes. Those somethings were my lung or possible the aorta and suggested the biopsy be postponed. I promptly arose from the CT machine, thanked the doctor and left the hospital.

      In talking with my OD later he said that I was in an early stage and the wait would not interfere with my treatment. I agreed and in June of 2007 the biopsy was made safely and confirmed that the cancer was the same as before DLBCL. I received successful secondary chemo treatment.

      Should my cancer or a new one return and I qualify for it I am considering a clinical trial using CAR-T that has been shown to be suitable to treat BLBCL.

      Holder good thoughts for you and good luck.

      almost 4 years ago
    • geekling's Avatar
      geekling

      Havent ever liked your nickname. Glad you are now willing to change it.

      You still need more information. How much radiation? Probable side effects? I know you love your agility.

      Why would they want you back on optivo if it isnt working? I 33rd the idea of another independent opinion.

      Get as much information as possible before making a final decision.

      Good wishes and very good luck to live without cancer.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      You apparently misread, geekling. I honestly could care less if you like my nickname or not. You read it differently than it was designed. I have absolutely no intention of changing it. I like it just fine because to me it says that I am fully living my life, despite having cancer.

      You make so many assumptions. Don't think I am not fully aware of what the radiation entails. I met with the radiation oncologist for an hour. Trust me when I tell you that I am smart enough to know what questions to ask. Furthermore, I discussed my options with a number of individuals that I admire and trust.

      I didn't need another opinion. My decision has been made. I have absolutely no misgivings or fears. I am looking forward to getting the tumor zapped.

      Man, it was a great vacation. Sorry it has ended. :( :(

      almost 4 years ago
    • RubyFaye's Avatar
      RubyFaye

      @LiveWithCancer I get your name. In fact, I posted something somewhere and I ended my statement with "I am living with cancer NOT dying of cancer" !

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Thank you, @RubyFaye!!! Maybe it takes getting a truly dire prognosis like we did to appreciate just how awesome it is to be able to say that we are LIVING with cancer!!! Perhaps better would be LIVING in spite of Cancer :) :)

      Yesterday, I visited my friend who was diagnosed with lung cancer in late June. He is in ICU and chances are way too likely that he will never leave there :( :( :( He is still smiling and joking around, but I am afraid he isn't going to be given the opportunity to Live with Cancer :( :( :( Breaks my heart...

      almost 4 years ago
    • Lorie's Avatar
      Lorie

      Breaks me too. Recently had two friends passed away with heart disease. I'm so sorry for your sadness. Good memories will come after a while. I'm still checking on the house of one of them and it was very sad at first but then I started to get glimpses of the good times. Lorie

      almost 4 years ago
    • RubyFaye's Avatar
      RubyFaye

      @LiveWithCancer, I think 'living in SPITE of cancer" is better !!
      I am sooo sorry about your friend. Sending prayers

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Lorie and @RubyFaye, I talked to Bud earlier this evening. He's doing better!!! They have moved him to a regular room and are trying to wean him off of high speed oxygen (however you phrase it).

      I am heartened and cautiously optimistic.

      almost 4 years ago
    • Lorie's Avatar
      Lorie

      How great was that.

      almost 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I went to see Bud this morning. They are now talking about him going home early next week!!! Considering we were very worried he would die in the hospital this stay, that's very optimistic news!!

      almost 4 years ago

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