Seeing a PA at follow-up instead of ONC?

thatblondegirl
thatblondegirl Member Posts: 388 Member
edited February 2022 in Uterine/Endometrial Cancer #1

Hi, Ladies

I have a 9mth post-treatment follow-up appointment tmo at ONC’s office. When I called today, I was told I would be seeing the PA. I said, “I won’t be seeing the doctor???” She said, “No. For 3-6-9-….blah…blah….you see the PA. If she thinks there’s some reason for concern, she’ll tell the doctor.” This is new. And I had no idea this was the new way of doing things over there.

I was NOT happy! I didn’t say anything and kept the appointment because I need my port flushed, but am certainly going to discuss this tomorrow! This is a cancer office! Not some corner store clinic! And I’m not even a year out yet! The FIRST thing my husband said was, “What? That’s ridiculous! It’s not like you’re going to a PCP’s office for a follow-up after a UTI!!!”

And I can’t forget that the GYN (an actual doctor!) was inside my body for 45 minutes doing the hysterectomy and didn’t see, completely missed, 8 bright, neon orange little tumors in my pelvis!! How can I trust a PA to spot something?

Not to mention I’m still taking that powerful immunotherapy and I wanted to discuss it!

What do y’all think? Don’t you think these follow-ups should be done by an actual doctor? Have you ever heard of this? Do y’all see your doctor or a PA at follow-ups?

Comments

  • Forherself
    Forherself Member Posts: 1,013 Member
    #2

    Hi Alicia,

    9 months. That is good. In answer to your question, yes I see a PA, and have since my 12 month visit. I saw my oncologist for my two year visit, and just realized yesterday I couldn't remember her name! I love them both. I will say that there is a shortage of gynecological oncologists. They are super specialists. Using PA's for follow up frees them up for the surgery and treatment. PA's are highly specialized. They know a lot about a very narrow subject, and that is gynecological cancer in this case. You can trust them to do follow up. You can ask your questions. They should know about immunotherapy, and if they can't answer your questions request a visit with the oncologist, or a message with the oncologist. I found that I had some symptoms that could be recurrence, the visit was with the Gyne oncologist. The PA is very good at doing the exam. Ask them all your questions. If they can't answer, go higher.

  • Ribbons
    Ribbons Member Posts: 154 Member
    edited February 2022 #3
    https://csn.cancer.org/discussion/324748/seeing-a-pa-at-follow-up-instead-of-onc

    Yes I usually see a PA. I go to a highly rated oncology center, my ONC/GYN is s very good and I like her but she likes to visit with her patients during appointments so is usually running late. Her PAs are very good and highly trained specialists, I have no problem seeing them. If I want to see the Dr. though, I can but it might be a bit of a wait. If I have a question for my Dr. the PA relays it to her.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #4

    Thank you so much, Forherself and Ribbons!

    That is VERY reassuring! I feel much better about it! Technically it’s closer to a year since my last infusion, but since I had to get a second CT because of the seromas, it was 4 mths ‘til we got the “You’re in remission” declaration!

    It was unsettling because I had not been told there was a new system for appointments. Anything I’ve ever known or read referred to seeing the ONC every three months for two years. I hadn’t considered that the PA might also be specialized in oncology. I hadn’t looked at my doctor’s website in a long time, but found her bio there this morning. She’s new in the office, is a NP-C, and has a masters in nursing with much experience in ONC, specifically at MD Anderson.

    It’s also reassuring to imagine that he’s in such demand…and needs a NP-C to see patients like me… because he’s so good! And having her do follow ups allows him to help more women!

    You have helped me a lot, ladies! You know what else occurred to me as I read your posts? That I’m not in the “She’s sick” group anymore! That I’ve moved into the “…been taken care of, “ and “She’s good, now,” bunch! That was a bit of a revelation to me!

    Thank you! Thank you!

    ❤️❤️❤️, Alicia

  • Forherself
    Forherself Member Posts: 1,013 Member
    #5

    Yes graduating to the PA is kind of a good thing. OR nurse practitioner. That is actually the training of the lovely woman I see. She is well qualified to do the exam. I am an RN and I keep my eye on her.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #6

    Hi! OK….so all went well with the NP-C! I was asked immediately if I was going to be OK with it, and I said yes. They actually asked me at least 2 more times if I wanted to see doctor to discuss the immunotherapy. I declined.

    At this point it’s a waste of time. I know what protocol is and my body is doing fine now with the 100mg. Doctor’s advice is to still take the 200mg. Repeatedly I heard…well, if you feel better taking the 100… At least 3 times I said, “ I WANT to take the 200, but my body has said NO! It’s not like I’m sitting around thinking…oh, I don’t feel good, or Gee, I wish I wasn’t so tired…It’s not that!! A hemoglobin level of 7.5 makes the decision!

    As an aside….At the end she says, “ You don’t have cancer. We’re just trying to keep it from coming back. You need to go out there and live your life! Go places! Have fun!”

    OK….well….first of all there’s COVID, and despite vaccinations & boosters, the last time we vacationed we both got COVID. I would not like a repeat!

    And… I thought about this later…(This would be funnier if it weren’t true!)

    So, let’s see….. 🤔 I’m supposed to be living my life like I don’t have cancer, but every time I step out of the shower I see that ugly port, every night I have to watch the clock to swallow a huge pill at a specific time, I have to get bloodwork once a month and wait anxiously for 2 days with baited breath for the stupid CA125 result, every 3 months I get to slather lidocaine on my port and put a big piece of Saran Wrap over it (this brings back lovely memories) and go back to the ONC’s office (also my infusion site, more lovely memories) and allow them to violate me with a large, ice-cold, stainless steel contraption, and get my port flushed! That is a VERY long list of things to ignore!! Sure!! I can ignore all that! Does that sound like the life of a patient who’s past cancer?!? I’m just sayin’….😆

    I’m NOT complaining ….I’m just sayin’ it’s rather ridiculous to suggest that it’s all over!

    ❤️❤️❤️, A

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #7

    A,

    I saw an NP once during my chemo treatments. I was alarmed but I just went with it realizing the Oncologist must have been busy and everyone in the office told me I would love her. I did, she was very nice and responsive to all my questions.

    Skip ahead to post chemo and radiation and I am enrolled in the Cancer Survivors Program which is led by the same NP in 3 sessions. She presented me a binder with my dx (IIIA- high risk) treatment plan and followup plan (every 3 months). We discussed how I could cope better post treatment. I explained my anxiety of reoccurance and my fears. There was crying. I take Lorazepam. I asked what specific signs of reoccurance I should watch out for and she wrote them in my notes. We discussed diet and exercise, all explained in the binder. We agreed on three goals to help me to cope including getting support from the right resources and curtailing my google statistic research and coming up with some thought or phrase to motivate me daily. I just recently came up with NOT TODAY!. Cancer will not take me or my joy in life or my sense of humor, NOT TODAY! The NP said, "You have a PET scan and a ct (now 2 ct's) that say you do not have cancer, embrace that." I think this program is a great help. I wish more oncologist offered it. It does not take away all my fears but like this site, it gives me the platform to voice my fears. I look forward to my next Survivor's visit with her in May.

    I hear you, A!

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #8

    Thank you, Lyn!

    The support Survivors Program sounds really good! I’m so glad it’s helping you! I really like your phrase, “Not Today!” I use that pretty often as to other things, but it’s a great way to handle this post-treatment mindset!

    Actually, I was thinking on a scale of 1-10 my fear of a recurrence is only about a 1! Which happens to mathematically coincide with the statistics! Whereas, my fear of being killed in a car accident on Houston freeways is much higher!! More like a 7! (The statistics say it should be a 6!) Does this keep me home? Of course not! 😆

    I would really prefer not to think about cancer! In a healthy way…not a denial kind of way…because perseverating about it accomplishes nothing! As Scarlett O’Hara famously said (after she had killed a Union soldier on her stairway), “…..I can’t think about that now, or I’ll go crazy. I’ll think about that tomorrow.” That stuck with me since I was a young girl! There’s no point in worrying about it until you have to!

    😎, Alicia

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #9

    Dear, Alicia,

    You are wise and I LOVE the Scarlett O'Hara reference! Love that movie and that line never stuck with me until now. Thank You for that. I will think of it with Scarlett's Southern accent.

    Your scale of 1 is awesome!!!! I am at about a 7 but working my way down. Your encouragement and all the other survivors plus a 3rd Angel mentor I have surely helps me. The Survivorship Program is fantastic. I keep asking myself, " What more is it going to take to reassure you?!"

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #10

    Thx, Lyn!

    I read your About Me page a long time ago, and was so sad imagining you in the parking lot by yourself sobbing. You’re just a few months behind me on this difficult road. And your treatment was much more than mine. I’m glad we’re both past that part!

    I guess I would add to Tamlens’s “mental game” strategy question, that to even get a mental game we all have to get through the total shock phase first. The shock lasted for at least 3 months. I know for months the first word in my head every morning…the very first word, it was awful!…was “cancer.” I couldn’t WAIT until that wasn’t the case anymore! Chemo pretty much fixed that! Then it was, “Try not to throw up!”

    I do love my movies and I’ve always hung on to the ones I find funny, or little pearls of wisdom. I hate to be inaccurate with my movie quotes, so I looked it up! In the stairway scene she says, “….I won’t think about that now. I’ll think about that tomorrow.” In the final scene (thinking about how to get him back) she says, “I can’t think about this now. I’ll go crazy if I do. I’ll think about it tomorrow!”

    Just for grins….one of my other favorites….is from Giant. I really appreciate this one because Elizabeth Taylor’s character is repeatedly unapologetically feisty and forthright, and reminds me of myself, especially if I get a “a little wound up” about something! She says to her husband, “You knew what a frightful girl I was when you married me. I did not deceive you, Sir.” …..Followed by that beautiful smile!

    Absurd. Wistful. Sweet. Optimistic. Beautiful. Honest. In Pretty Woman, Vivian says, “I want the fairy tale.”

    ❤️, Alicia

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #11

    Alicia, you did say one thing that put my antennae up - that you are taking immunotherapy drugs. Those are still a developing area of cancer treatment so I do think your concerns are important on that subject.

    I remember seeing the gyn onc in the beginning, and he would leave me (and others) just waiting forever for a follow up appointment. I used to get upset until I remembered just how much time he took, and would have taken more, when first dx and prior to surgery. I was switched to, and still see, the onc in the office annually which I like very much.

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #12
    https://csn.cancer.org/discussion/comment/1693507#Comment_1693507

    Alicia,

    I reread your about me page and what a journey you have been on! All the waiting on pathology and staging with two surgeries! The dishonesty of the Gyno and the rush job. At least my Oncologist warned me the Stage 1 frozen section and the less than 50% invasion section was not the final word and he could not find my Sentinel Node and chose not to remove lymph nodes. The final pathology with upgraded stage and invasion was quite the shock to me as well but finally the Truth. Thank Goodness for M.D. Anderson pathology and their wise counsel. I don't know much about them but I hear good things here. Each of us ladies must be our own advocate. You are very resourceful. I am including the drug Zejula to my notes of immunotherapy drugs which includes Ibrance, Keytruda, Lenvima and Jemperli. My Onc hasn't expressed much hope regarding reoccurence with, "Of course there is chemo therapy BUT...." My list is my possible second opinion/immunotherapy reminder from the ladies here. Proactive.

    We are both movie buffs and you have quoted another couple of favorite movies of mine. TY, a pleasure to read your quotes from these two ladies. Elizabeth Taylor, fabulous! Remember she was Maggie, the cat, with Paul Neuman.

    I am sending out my most hopeful and positive vibes on your future blood test. May your RBC be improved greatly.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #13

    Thank you, NTFC & Lyn!

    My bloodwork was normal this week with hemoglobin: 13. WBC RBC & platelets all normal! So, my body seems to be fine with the 100mg dose. The monthly bloodwork will continue for at least another 3 months.

    My original concern this week was more about getting a good exam than having the Zejula conversation. And NP-C did a good job.

    I pretty much decided after the second blood infusion that I was on my own with the decision about dosage. I wasn’t going to get anywhere discussing with him. He keeps saying 200mg, but my body is saying no. The larger dose, might or might not do a better job of preventing a recurrence, but we’re never going to know. Since my chance of recurrence is pretty low anyway, this seems like the best decision. I have had conversations with another medical professional who is very familiar my history, and with the drug and dosing. Her opinion is that 1) I need to be careful with my blood because it’s already been through chemo, and to keep taxing it might be harmful, with the known worse side-effect of the drug being leukemia. (Don’t want to go there!), 2) I’m not a spring chicken (66!), and 3) she and the drug maker both believe that a 100mg dose is enough to be effective. Dosing is also based on weight, with 100mg being prescribed for women who weigh up to as much as 15 lbs more than I do, so I’m good there, too!

    Thank you for your support! Making these decisions is tough!

    I’m a girl who loves words, so when someone has found a way to put a string of them together in a way that is funny, makes me think, reminds me of myself, or just seems like a darn good way of expressing a thought, I like to remember it and use it! I wrote this down fairly recently. From Yellowstone: Kayce says to John (after he narrowly escapes bleeding out from a ruptured ulcer), “….well, bright side…you don’t have cancer. You’re not dying yet.” John replies, “Yeah, maybe not, but I’m living like it, and that might be worse.” An excellent point! So, I try to remember that! I’m trying not to live like it!!

    ❤️, Alicia

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #14

    Alicia,

    Now that is great news for the good exam from the NP-C and on your blood work. Further confirmation your 100 mg. Zejula decision is best for your body.

    Good point on not living like you are dying. You know Tim McGraw's country song Live Like You Were Dying, where after looking at apparently terminal xrays, this dude proceeds to go sky diving, Rocky Mountain climbing and bull riding. He certainly isn't living like he is dying. I always wondered before my cancer dx, if he had cancer and how does he have all this energy? Then I found I could drive myself to chemo and still walk daily, do my housework and cook. Perhaps, he was taking two naps a day, too.

    ((Hugs))

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