WTF- chemo limbo

So, here in the US we must meet with NP or dr before start of each chemo cycle. My weekly schedules had been on Fridays. As many of you saw, my chemo last Friday was called off due to low blood counts in a few areas. I have had a rough week physically so was beginning to think a week off would be good for me. First thing this am, I get a call from the same np stating that my oncologist is not okay with missing a week and I will begin my second cycle tomorrow (tuesday) instead of Friday. And moving forward will be on a Wed vs Friday cycle. I am assuming the nurse practitioner paged my dr last friday and never got a response so had to make the decision based on my below threshold numbers. My family is frustrated given their schedules had been cleared on Fridays and wanted to be sure my dr was aware last Friday's chemo was pulled- and now BAM I am on a wed cycle and they are already scrambling to see who can take me next week. Anyone? Anyone?

What infurriates me is that this is not the first time my oncologist was not responsive when paged. (Last time an ER dr was paging her for hours and she did not ever reply- while I was in ER!) I'm really torn- i'm told she is the best, but have not been happy with her responsiveness or ability for me to forge any kind of bond with her (her support team is wonderful and always accessible- but my oncologist overrides their decisions on occasion ). She has been known to roll her eyes at some of my questions and has made light of some of my concerns. And I am guessing she isn't overly forthcoming with info given my high anxiety levels. That said, I have no reason to distrust her medical decisions. Have any of you changed oncologists mid-way through treatment by choice simply because you didn't care for your dr on a personal level? I have been told people travel far to see her and that she is a very well regarded gynocological oncologist/surgeon. But, I would prefer to have a Dr that develops a relationship with me and that is always looking out for me (side effects, advise etc..) But I am also concerned I could switch and be in same situation or worse. Thoughts?

-anne

Last edited by

11 Replies

oldestnewest
  • Anne,

    It is natural to be frustrated. I think the oncologist is trying to keep you as close to the recommended treatment plan as possible. Also, the support staff may say anything but it is the oncologist who has the final say since oncologists are the ones who have gone through all the training and know the best course.

    If I were you, I would take the oncologist's reputation and skill over her bedside manners. I would also hesitate to change the doctor's midway through the treatment.

    Hope you get over this hump soon. Did they give you shots to boost your numbers? I got Neulasta shots. They come with their own side effects :(

    Al the best.

  • Thanks Yoga- i think your advice is right. Not going to disrupt my team in midst of treatment. I have had transfusions and/or neupegin shot in past. That shot made me feel much worse than chemo, but was necessary for my surgery to take place. Unless dr says i need the shot, i am not asking for it. On other hand, will take blood whenever they say I can have it. We will be monitoring carefully as it only helps with some symptoms and blood counts. But they know I like it and will give it to me when warranted. Appreciate your direct advice and kindness. 🌸🌺🌼

  • Hi, I'm in the US too. The same thing has happened to me in treatment with my white blood cells being low which changed my chemo schedule. Unfortunately, things like this happen and it's out of our control. I was really really frustrated when this happened because like you said my husband was taking off work etc and I had mentally prepared my finish date which changed. I understand your frustration but I have learned stuff like this happens and looking at the big picture it's not that big of a deal. Everything will work out.

    The best care and doctors are the most important thing! I would keep your doctor like others have said.. the skills and experience is far better then bed side manner. Where are you getting treated in the US?

  • I am being treated at UCSF in San Francisco. How about you?

  • Johns Hopkins in Baltimore Maryland.. but have my infusions at Sibley Hospital which is closer to me in Virginia. Sibley is affiliated with Johns Hopkins.

  • I was ok with chemo delay, just pissed my dr wasn't and the delay wasn't cleared by her, thus the scramble. Given her history of not responding to pages by her own team, ER etc.. its has continued to leave me and others treating me in limbo. This wasn't the first time. But I 'm moving on. We all have bigger issues. She was probably in surgery saving another fellow warrior! At least that is what I am telling myself.

  • Yes, I can see how that is frustrating. Especially when in ER! Does her team say anything? Keep pushing and think positive for your levels to go up! 😊👍🏼

  • My oncologist is the practical sort. Not the touchy feely sort. He says it as it is. He has no time for my questions about my side effects from chemo. I had to ask different practitioners for answers. Ido wander if the nature of his job has made him like this. He has to keep a protective shell round him.

    So i choose to stay with my oncologist but if he was unkind to me i would change.

    Good luck with your chemo.

  • Dear Anne, I completely understand and would have felt exactly the same. Because the shock of the diagnosis is really just the beginning of a long and arduous journey.

    I managed this time to get through my chemo schedule without changing days even when my bloods were on the low side and then was very relieved. My husband had scheduled each week and friends were on call and driving duty for the kids. In my mind it would have been a huge mess to change and mentally, I was so focused on the dates and schedule that I wasn't able to accept any change. Our Drs have no understanding of this part of our treatment.

    But, like the other ladies I want to offer pragmatic advice. The most important thing here is the oncologist doesn't want you to wait. The nurses/her team made a best guess decision based on your bloods. The dr decided that this was maybe over caution and wants you to continue. I hold onto structures and plans and so completely understand your feeling. If only she'd picked up her pager last Wednesday.

    But my practical side says - stay with this highly rated dr and the team you respect. I would add, that when you next meet you dr you are fully entitled to express frustration that your treatment was postponed and future dates changed. I would ask for an explanation of what happened.

    I hope the chemo goes well tomorrow- good luck.

    T. X

  • Hi Anne!

    I completely understand your frustration! Dealing with this dreadful disease is enough and it is nice to know we have qualified AND caring doctors on our side!

    That being said......I would definitely go with reputation and skill over bedside manner. If she didn't have the reputation at being the best I would say you should get a second opinion to see if you could find a better match. I'm glad you like her support staff! Perhaps you could talk to them about your frustrations. They may not be able to 'fix' things, but maybe explain a little more about the doctor to make you comfortable. Sometimes it just feels better being able to talk about it!

    I had a similar situation right after surgery. I was with the best GynOnc in the area. I was expecting him to be compassionate and hold my hand and answer every silly question I could think of. However, his PA and Onc nurse were wonderful and did just that. They never rushed me and I felt I got more information from them than I would any Doctor. :)

    Not that it's an excuse, but I think the Dr's (especially the best in their field) are so busy doing surgeries and saving lives they pass on our questions of 'what about this or what happens if' to the highly trained and compassionate support staff.

    All the best! Hugs!

    Jodi

  • Hi Anne.....I'm in the US, too. I live in southern NH and the oncology center at the hospital here is affiliated with Mass General. I found the team very accommodating regarding my schedule, etc. I was lucky to have two excellent MGH doctors......my husband and I didn't "hit it off" with the first doctor I saw, so I changed, and was very happy I did. That was at the very beginning, so I realize what a bind you're in this far into your treatment.

    I guess I would just try to express my concerns to your dr and go from there. Sounds like she has a good reputation, and that is more important than a good bedside manner.

    I was diagnosed at Stage 4, and I am in remission two years now,so take heart. There is light at the end of the tunnel. I also had neupogen shots twice a week along with my chemo regime and 3 blood transfusions. Seems so overwhelming to go through, and then thinking about it now, but it becomes a dim memory as time goes on. You'll get through it for sure.

    Sending hugs from the east coast.......JudyV

You may also like...