Need some advice, please!

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I had treatment for stage 2b breast cancer last year in England (husband is Air Force and stationed in England). I recently moved to Florida and selected a new oncologist based on online reviews (that my insurance would approve)

I had my first appointment on 25 November 14. I was surprised to see his Nurse Practitioner instead of my oncologist. She did a quick breast exam and gave me a prescription for my AI. I had to tell her about my headaches (she seemed to be in a rush) and she ordered a brain MRI. I also told her that I never had a bone scan and she ordered a PET scan. I finally met my oncologist but only for a few minutes.

On 1 December 14, I had my brain MRI and had my PET scan the following day. Shortly after, both results were uploaded into my online records. the PET scan showed a spot on my liver that was of some concern. I never did receive a call, instead I had to call the cancer center and shortly after received a call back from the nurse practitioner. She said that most of these spots end up to be nothing serious but ordered an abdominal MRI.

I had my abdominal MRI yesterday (15 December) and asked the tech when the results should be ready. She told me that they should be ready either later that day or tomorrow morning. I contacted my cancer center around 10:30 this morning. The receptionist said that they received the fax but she couldn't say anything or uploaded the results into my online records until the oncologist signed off on it

I left a message to have my oncologist or the nurse practitioner contact me. I called several hours later and was told by the receptionist that they have 24 hours to respond. I dont understand why they can't contact me to just give me the results.


My questions are as follows:

1. Is it normal to see my oncologist only for a few minutes, especially at my first appointment with him?

2. Is there any reason why they take so long to give me the results? Do you think they'd contact me if everything was okay?


Thanks for any help anyone can provide. I'm just trying to figure out how things work here in the states

Comments

  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    Not sure why my history doesn't show up on my initial post but here it is ;)

  • Tomboy
    Tomboy Member Posts: 3,945
    edited December 2014

    Hi, Bonski, I think that it is more normal than we would like, to have the initial oncologist meeting to be exceedingly brief, mine was, and I have read other women say so too. And, there is absolutely no reason to wait so long, good or bad. Sometimes waiting is the hardest part. but as another lady on here has said, " Don't go there till you get there", and it is just a good time now to take a few slow deep breathes, and the future will soon come. You did some excellent chemo, and now you are on some very strong pills. The problem with MRI's is, they show EVERYTHING, without being too specific at all about what it really is. And in my reading, it also takes quite a long time for something to be big enough to even image. A good approach would be to wait and see. A big and gentle hug to you, and I am sorry, yeah, it's hard to wait to hear.

    The original posts that you do when you start a topic, never show up! It took me a year to figure that out! ") !!!

  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    Tomboy, thanks for your quick reply. I just wasn't sure if it was normal not to see your oncologist as much....quite different than the care I had in England


    Thanks for the hugs...sending hugs your way too

  • bevin
    bevin Member Posts: 1,902
    edited December 2014


    HI Bonski, I depends on your center and your oncologists practice as to frequency of visits and whom you see.  I see my oncologist at  every visit, and my appointments are not rushed and I feel well cared for.  The nurse only checks me in and takes quick updates. The majority of my time is with the oncologist who also performs all exams.  I have only seen the NP on one occasion and that was when I needed to reschedule and the doctor wasn't available. However, I will say I felt well cared for by the NP as well. At some centers they switch between Onco and NP every other visit, other offices you only see the NP. 

    If you're not happy with the format of care there, call another oncology office and ask what their protocol is. That is definitely the beauty of our care here in the US. If you don't like your doctor for some reason there are plenty of others to choose from. You need to find a good fit for you and your needs.  It does appear though they were attentive to your needs as related to investigating the pain/issue and ordering scans. As to review of scans, my office requires the doctor to sign off prior to upload to the system. However that happens within the same work day as they receive results.  Which is generally same day or next day of the scan.

     

    Good luck with your results, I hope everything turns out fine for you and these are not cancerous issues. 

  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    Looks like I'll be looking for another oncologist. I spent a lot of my time today trying to get the results of my MRI with no luck. Don't they know how much anxiety it causes a person? I even contacted management and they weren't able to help.

    I later found out that the nurse practitioner and my oncologist only worked half days today (and they only work at my branch on Tuesdays...wich was yesterday....not sure why they couldn't give me the results then)

    I even tried to have the receptionist give me the results but she wouldn't budge...said it was protocol. To hell with their protocol! I have a right to know MY test results. It's my insurance company that's paying the bills!

    Am I being too dramatic? Do you think it's bad news that nobody is giving me the results? I mean, if the results were good, the receptionist could just have told me that there is nothing to worry about. Now my mind is playing tricks on me :(

  • LindaE54
    LindaE54 Member Posts: 2,054
    edited December 2014


    Hello Bonskie - sorry you're going through all this.  The waiting is hard and generates a lot of anxiety.  But don't let your mind play tricks on you.  The receptionist cannot give you results, good or bad, so try not to go down that path.  Here in Quebec, even the nurse cannot give results (which drives me insane!!!) and there is no such thing as on line results - which is a shame.  Following my last bone scan, the nurse told me my MO asked for an urgent appt in ortho but wouldn't tell me why - well that got my mind going for 5 days until the MO called me.  It turned out she just wanted to be extra careful because I'm planning a trip.  All my results were stable.  I never see the nurse - it's always my MO who takes as much time as required and is very helpful and patient with my questions, and for me that's reassuring  I only call the nurse when something pops up and she relays to MO.  Here's hoping you get good news.  Thoughts and prayers coming your way.  Keep us posted.

    Hugs, Linda

  • shoppygirl
    shoppygirl Member Posts: 694
    edited December 2014

    Hi bonsai

    It is unfortunate but the receptionist cannot give the results nor can the technician. Trust me, I have tried! Lol!!

    I had a thyriod nodule biopsied and was anxious about the results. A friend works at my drs office and I called her to see if the results were in. She knew how anxious I was so she gave me the results on the phone (benign) but she got in big trouble for doing so.

    I am so sorry that you are being put through so much worry and your oncologist is insensitive to that. Having incedential findings on scans is very common, especially on the liver and lungs I have a lung nodule that they have been following for 2 years with no change.

    Anyway I hope you get your results soon so you can put your mind at ease.

    Let us know when you finally hear. We are all thinking of you.

    Hugs.

  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    I finally received a call from my oncologist about an hour ago. He told me that there were two lesions....they were small but without previous scans they are unable to determine if they are anything to worry about. Luckily, my husband sent me my complete records along with all my imaging CDs. I will drop them off at the imaging department tomorrow morning and will call my oncologist once I do, so he can personally speak with the radiologist.

    More good news....I finally have my oncologist's private phone number....don't want to overuse it but glad I do have it!

    I'm planning on making another appointment with my oncologist to go over the things that have happened and to find out more about the protocol, etc. hope we can work things out. If not, I alreadt have a different cancer center in mind.

    Thanks for everyone's inputs?

    Hugs, Bonnie

  • shoppygirl
    shoppygirl Member Posts: 694
    edited December 2014

    So glad he called you back. I hope that you can get some more information on the spots asap.

    Hugs.

  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    I dropped off my CT scans from last year and the radiologist was able to take a look at them today. I received a phone call from my oncologist about an hour ago. The lesions were not on my last year's CT scan. My oncologist said the lesions are too small to be biopsied and wants me to repeat the MRI in 2 to 3 months. He said that he thinks it's nothing, but it doesn't give me any comfort. Can't they just cut them out and check them that way? I left a message on my oncologist's voice mail asking that question.

  • shoppygirl
    shoppygirl Member Posts: 694
    edited December 2014

    bonski

    Is it possible that the reason they did not show up before is that you had two different types of scans? The MRI might be better at seeing small findings than the ct.

    I know in my case the lung nodule was not on my xray but was seen on a ct scan.

    I know it is difficult to wait but I think a repeat scan is the usual protacal.


  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    thanks shoppygirl. Waiting is not a virtue of mine ;) guess I don't have any other option ;)

  • 208sandy
    208sandy Member Posts: 2,610
    edited December 2014

    I've had a lung nodule they've been watching for six years now - it hasn't done a darned thing!

  • shoppygirl
    shoppygirl Member Posts: 694
    edited December 2014

    Nor mine Bonski

    Sandy, those darn lung nodules are a pain in the you know what!!!!

  • ppplocke
    ppplocke Member Posts: 44
    edited December 2014

    Are you comparing two of the same tests? Ie. are they both CT scans of the same region? If the tests are the same and you now have two lesions, personally, I would NOT wait. This is your life you are talking about. If someone is dealing with mets to the liver (NOT that this is what you have...not at all) but if you have two new "small" lesions that were not there last year, 2-3 months could mean a huge difference. I am treated in San Antonio, Texas and my docs would NEVER "wait and see" on two new lesions on a liver. Never. In my opinion you need to be your own best advocate...let's assume it ends up being nothing but regardless you should fight now to find that out. Just my two cents.

  • Lauriesh
    Lauriesh Member Posts: 692
    edited December 2014
    Do you have a copy of the pet scan? If it showed up on that,it shoud have a suv number. That is how active the lesion is. The higher the number, the more likely it is cancer.
    You will not find a dr who will go cut it out without knowing what it is.
    I don't think waiting a few months is going to hurt.
    I had an 11 cm liver tumor ( which is Huge). Yet, because I responded to treatment, I am doing well. "catching it early" really doesn't mean much when dealing with stage 4.

    Laurie
  • Bonski68
    Bonski68 Member Posts: 57
    edited December 2014

    My CT scan was from England where I was first diagnosed last year. The report said that nothing was found on the liver. My new oncologist when I moved back to the U.S. wanted me to have a PET scan from jaw to mid thigh. The radiologist saw a lesion on one of the images, but only faintly because of the position, I guess. They followed up with a contrast abdominal MRI and found two 9mm lesions. I gave the radiologist my CT scan after speaking with my oncologist. Once I dropped it off, the radiologist took a look at it and couldn't see anything. Since they were different scans, and they are too small for a biopsy, my oncologist decided to wait 2 or 3 months and schedule me for an MRI end of February. I'm trying not to think about it, but can't stop thinking about life/death. I have major depression since my cancer diagnostics, ended up as an inpatient for 2 1/2 months during which my husband of 23 years announced he wanted to divorce me. Tried to commit suicide three times while at the institution in England and they medically evacuated me to the states near my parents where I finished my inpatient and outpatient therapy. Now I live with them and trying to find the meaning of life. Sorry to write all of this....I'm in one of those moods today :(

  • wrenn
    wrenn Member Posts: 2,707
    edited December 2014

    I think your bigger issue needing attention is anxiety and I hope you can find some help with that. The cancer if it is back is what it is but the anxiety is what you live with and the fears are very debilitating. I would work on finding the right doctor for that issue and the cancer concerns might fade a bit. I think you are very lucky that your oncologist responds to you as he does since the timing wasn't really that bad as many of us know. Hopefully when you get the anxiety treated the rest of your time with the oncologist and receptionists should flow a bit smoother. All the best to you. Anxiety can be a nightmare.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited December 2014

    Bonski, what part of florida are you in? We have several wonderful Cancer centers all over the state

  • Bonski68
    Bonski68 Member Posts: 57
    edited March 2015

    I live near Tampa but still scared of driving there and I'm not a night driver. All the cancer support groups are in the evening.

    Well, I received the results of my follow- up MRI and my lesions grew by 1/2 cm. I'm waiting to be scheduled for a biopsy. More waiting

  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2015

    Bonski, I am so sorry to hear of your troubles. I had forgotten that they were waiting for a few months for an MRI for you. I am wondering how you are doing with the anxiety, you sound resigned. I just don't like to think of you having to deal with this all alone, is all. I will be holding you in my thoughts, and still hoping that the lesions are benign. OK?

  • Bonski68
    Bonski68 Member Posts: 57
    edited March 2015

    wrenn,

    Yes, I suffer from severe depression and anxiety. I take Klonopin for anxiety and effexor for depression. I also talk to a counselor on a regular basis.


    Tomboy,

    I have more support here, living with my parents than I had in England. I signed up for Relay for Life and hoping to meet others in similar situations

  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2015

    I am so happy for you, and I hope that you meet some wonderful new best friend there. And I do hope the biopsy results are benign. I hope your parents are happy to have you back too. it could be just cysts or something. When will your biopsy happen? I do hope you will come here and let us know. Big hugs!

  • Nightnurse
    Nightnurse Member Posts: 86
    edited March 2015

    Bonski, I will keep you in my thoughts and say a little prayer for you. I am in your position myself, waiting to have 2 lung nodules rescanned. I hate have scans or labs on a Friday because it will mean waiting over the weekend for results. Like everything else, hurry up and wait! I hope your biopsy results are NED!

  • Bonski68
    Bonski68 Member Posts: 57
    edited March 2015

    yes! Waiting is the worst!!!

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