My sister's tentative diagnosis metastatic cancer

Discussion in 'The Watercooler' started by seriously, Sep 17, 2011.

  1. seriously

    seriously New Member

    My sister just called me. As I wrote in an earlier post, my younger sister is in an acute rehab facility recovering from a blood infection. A CT scan of her back showed abnormalities.

    Yesterday the bone scan results came in and she and her hospitalist thought she was OK - arthritis according to the spine surgeon.

    Apparently the oncologist came in either early this morning or late, late last night and reviewed everything. Her conclusion was that everything is consistent with myeloproliferative metastatic cancer.

    The hospitalist came to see her this afternoon and shared this with my sister. He was downcast and she said he felt that the oncologist's diagnosis was most likely correct because she has access to all the records, CT, bone scan, labs etc. and the spine surgeon was just looking at the CT.

    Next step is a biopsy to confirm the diagnosis.

    I do not know what she will decide to do once the biopsy results are back, if they confirm metastatic cancer. If it is metastatic disease then I would expect it carries a grim prognosis. Until we know more about the type of cancer it's hard to say for sure. My sister said the oncologist's notes suggested radiation treatment.

    I think my sister thinks this is for treatment to cure the disease. My guess it would be treatment to alleviate her symptoms since she is in very bad pain, using a PCA with dilaudid around the clock.

    I cannot travel to be with her so I was very relieved to hear that our youngest sister is able to go for this week and be supportive to my sister and my mom.

    Healing thought, wishes and prayers are welcome - healing of the body and the spirit.
  2. Mattsmom277

    Mattsmom277 Active Member

    I'm so sorry to read this update. Healing thoughts, wishes and prayers on their way (((hugs)))
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'm sooooooooooooo sorry. Hope it's not really that grim...hope that there is help out there for her. (((Hugs)))
  4. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Definitely adding in my prayers. (((Hugs)))
  5. Steely

    Steely Active Member

    Oh wow....I feel sick for you.
    I am sending your sister many thoughts and prayers for healing and prayers of her body.
  6. keista

    keista New Member

    Also sending healing positive thoughts. Prayers and pretzeling in Florida.
  7. KTMom91

    KTMom91 Well-Known Member

    Many prayers and hugs going out.
  8. Hound dog

    Hound dog Nana's are Beautiful

    I'm sorry to say I think you're right about the radiation treatment. I certainly hope the oncologist is upfront and honest about the goal of treatment and the prognosis.

    Your sister and your family is in my prayers.

  9. Liahona

    Liahona Guest

    I'm praying for you.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    wow that is incredibly scary! Would never even think of cancer of the spine. I am sure praying for her here.
  11. hearts and roses

    hearts and roses Mind Reader

    Adding my thoughts a prayers. This is a lot to absorb and I hope that her team of doctors are open with her, giving her the opportunity to be proactive in the process. Many hugs to you as well, you must be so scared and worried.
  12. gcvmom

    gcvmom Here we go again!

    I was so hoping the news was better P. I hope they can at least keep her comfortable. Does your mom know yet?
  13. seriously

    seriously New Member

    No my Mom doesn't know yet and I personally feel no one should tell her until they have an actual confirmed diagnosis from biopsy or whatever is the appropriate way to confirm it.

    At this point the oncologist has not been to see my sister since she told her a week ago that the CT showed that my sister had cancer.

    I am really ticked at the doctors at this facility.

    First the hospitalist tells my sister there's an abnormality on the CT scan but doesn't have a diagnosis. Sister calls me anxious but OK.

    Then the oncologist visits my sister and tells her she has cancer while my sister is totally loopy on pain medications and afterwards isn't sure the whole thing was real. Sister asks nurse who says they are no female oncologists and the CT report said there were no abnormalities. Nurse tells sister she must have overheard other patients and visitors or doctors talking.

    Sister calls me confused and upset.

    I call the hospitalist. Yes there are abnormalities on CT. It would be premature to give a diagnosis until a bone scan has been done. Yes the oncologist is female and he didn't know she'd seen my sister. And he is going to ask a spine surgeon to look at the CT because he might have a different opinion than the radiologist. Apparently the radiologist also said cancer but the hospitalist didn't actually say that when I pressed him.

    I call sister and say - need to wait for bone scan on Wednesday. Sister anxious but OK to wait for results.

    Bone scan Wednesday.

    Hospitalist visits my sister on Friday morning and tells her - all OK, the spine surgeon says it's arthritis.

    Sister calls me happy and relieved.

    Hospitalist comes back Saturday morning and tells her - no the oncologist says everything is consistent with myeloproliferative metastatic myeloma. Hospitalist says we will do a biopsy to confirm but yes he thinks oncologist is right since she had access to all my sister's records. His conversation with my sister is based on his hearing the oncologist's chart notes rather than an actual conversation with the oncologist.

    Sister calls me distraught.

    Then Saturday evening the darn PAIN doctor comes to see her and scoffs at the cancer diagnosis. Tells my sister there's all kind of possible explanations for the abnormalities in the bone marrow that showed up on the CT. WTH????

    Sister calls me happy and relieved.

    I swear I have whiplash from all this.

    My sister would much rather hear the good news than the bad. I cannot blame her since the cancer diagnosis appears to be pretty much a death sentence with life expectancy in the months not years category.

    I find it very hard to believe that even the most arrogant and inexperienced oncologist would diagnose someone with this if they were not pretty darn sure of the diagnosis. And, after doing some research, I know that it explains some aspects of my sister's health problems over the past several years including her frequent life-threatening infections, some persistent lab abnormalities like very low WBCs and high calcium levels and her ever increasing severe pain that has been blamed on her gut problems but has only gotten worse despite ever increasing levels of pain medications.

    I surely hope that the oncologist is wrong. But my gut tells me she's not.
  14. TerryJ2

    TerryJ2 Well-Known Member

    Holy cow, what a mess. I am so glad you called and spoke with-so many people.
    Keep the note you typed to us and send it to the state board of medicine. This is very bad practice you are experiencing. Inexcusable.
    Your poor sister.
    I know you can't wait for the biopsy. That, indeed, will help.
    Many hugs.
  15. DaisyFace

    DaisyFace Love me...Love me not


    I'm so sorry...

    I am even sorrier that the doctors are making it worse with their double-talk and confusing diagnostic information.

    Hopefully it will get sorted out soon...and that your sister will get some treatment to relieve the pain.
  16. Hound dog

    Hound dog Nana's are Beautiful


    I understand both your sister's and your frustration, and it's very valid. Unfortunately, with medicine being so utterly specialized these days, this is common. It shouldn't be, but it is. A doctor is expert in their area of expertise, knowledgeable but not very informed when it's not. And in all honesty, in many instances, docs don't communicate with each other the way they should due to chaotic schedules. They rely on test results, patient feedback, and doctor and nurses notes.

    After I had my heart attack, I literally had an argument with the cardiologist over the fact that I have chronic renal failure and a result of 3 other renal diseases. Three sentences into the conversation I realized she only had a rudimentary knowledge of the urinary system.....basically what she needed to know in relationship with the heart. She boldly told me the diseases I have were impossible for me to have...........and I told her to stick with what she knows. Basically to mind her own business. I'm certain my urologists and nephrologists who have been treating me for years know what they're doing.

    Unless the oncologist is just dead wrong, which is possible as everyone can make a mistake, I'd say he's judging based on his area of expertise and experience. Radiologist can make a tentative educated guess, but they can't diagnosis as that is not their "area". They don't get to see the whole picture. Just as some of these other docs who are giving their opinions.

    I think you said a family member is with your sister right now. They need to talk to the nurse (nurse manager might be better) and tell them that for your sister's sake they need to get their act together. She doesn't need this bull, she needs accurate information without contradictory information being tossed into the mix. Nurse manager should run interference and get to the bottom of it for your sister....even if it means pulling in the right doctor to explain it to her better with nurse there to fill in the gaps.

    Don't feel bad about asking the nurses to step in either, it's their job to look out for the welfare of their patients and this is part of that. I'm surprised one of them hasn't stepped up to the plate and done it already.

    Your sister can't make an informed decision about anything when she's not getting the right information from the right people.

    I'm hoping the oncologist was wrong as well, but I'm thinking he knows what he's talking about.

  17. seriously

    seriously New Member

    I completely agree about the whole specialist thing.

    However I expect every doctor to act with discretion when they disagree with another specialist's diagnosis.

    In other words = argue and disagree with the other doctor. Don't tell the patient your pet theories, especially when you are talking life and death stuff like this, undermining the patient's relationship with the primary treating doctor/specialist and causing unnecessary emotional distress. Not without a ton of evidence to back you up. Which the pain specialist most certainly does not have.

    Jeez. You would think they would have figured that out by the time they got out of medical school.

    My sister told me that she has one nurse on staff who is being helpful in trying to get the oncologist to come see my sister and talk to her directly. The night shift nurse has such a heavy accent that I cannot understand 90% of what she says unless I get her to slow way down. Which she does for one sentence and then we are back to nonsense - lovely musical intonations - but still nonsense from my brain's perspective. Unfortunately my sister can't understand her either and she is the one who told me and my sister (eeked out in sentences of 4 words or less) that there was no problem with the CT scan that first day. So I have not made any attempt to get her to help and neither has my sister.