I got strange vibes from my oncologist today

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Marlene_K
Marlene_K Member Posts: 508
edited March 2014 in Breast Cancer #1
Ok, so I had my regular visit to my oncologist before getting my last chemo treatment on Thursday. So I asked him 'what's next'. He skated the question, as he often does, and went on about scheduling my next chemo. I asked if I would be having a petscan done. He said 'no'. He went on to explain that if the chemo didn't work and the cancer spread, it would put me at stage 4. I said 'yea.... and'?? He said that if I was at stage 4, it wouldn't be curable. He said it's treatable but not curable and that puts us in a whole different scenario. I was like, this is really strange!! I said 'ok, but isn't it better to find out now'? He said it's not common practice to have a petscan done and even the ACS doesn't recommend it. I came out of this appointment extremely down. I am a very positive person and like to be surrounded by positive vibes. I liked him my first appointment but since chemo started, I haven't gotten a real good feeling about him. He talks about the weather and how fast time is going EVERY single time I see him, which is once a week!

I thought I've read a lot of posts here about having a petscan done after chemo. Am I wrong? Is this something I shouldn't pursue? HELP! I thought I would be happy that I was having my last chemo treatment, but instead I'm being showered with major anxiety!

Hugs to all of you ~ Mar

Comments

  • Kat11
    Kat11 Member Posts: 1,931 Member
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    I would have to ask my ONC
    I would have to ask my ONC again, but I believe that she also told me no scans would be done after treatment and I am in Rads now.
  • teresa41
    teresa41 Member Posts: 471
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    hi
    hi marlene i finished chemo sep17and radiation on nov 18 my oncoligist hasnt had any scans ordered for me, i just have blood draws before each time i see him i guess he keeps check somewhat that way for me.everyone is different on the way they do things i guess.wishing you the best..hang in there..


    teresa
  • Marcia527
    Marcia527 Member Posts: 2,729
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    I didn't have any scans
    I didn't have any scans unless I was having symptoms. Just the blood draws and some docs don't even do that. I was told they rely on me to tell them when something is wrong.
  • Sher43009
    Sher43009 Member Posts: 602 Member
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    teresa41 said:

    hi
    hi marlene i finished chemo sep17and radiation on nov 18 my oncoligist hasnt had any scans ordered for me, i just have blood draws before each time i see him i guess he keeps check somewhat that way for me.everyone is different on the way they do things i guess.wishing you the best..hang in there..


    teresa

    Hi Marlene
    My oncol. follows

    Hi Marlene

    My oncol. follows the American Society of Clinical Oncology (ASCO) guidelines for follow-up. They don't recommend any scans, tumor markers, or x-rays as these expensive tests don't lengthen the life of a person with breast cancer. You can get a read-out (4 pages) on www.cancer.net or call 888-651-3038. The name of the artical is What to Know: ASCO's Guideline on Follow-up Care for Breast Cancer.

    If you're not comfortable with your doc. it may be time to change docs.
    Good Luck
    Sher
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    Oncologist Attitude
    Hi, Marlene, I am sorry your oncologist is not forthcoming or reassuring. Mine is just so-so, though he is a very cheery sort. He and Joe get along great.

    Post chemo, this onc. did not recommend any scans. The onc. I had seen in St.Louis for a second opinion ordered a petscan when I visited her between chemo and rads. Then, my onc. here ordered a petscan after rads were completed. I also have bloodwork every 3months, before I see the onc.

    So, it sounds as if, like me you, can't really discern your onc's opinion of your prognosis from his overall demeanor. That doesn't mean he thinks you're in trouble. The "let's wait and see" approach is standard patient interaction mode for some. I am focusing on communicating to my onc, "Yes, let's see how well I'm doing!"" You do that, too, Marlene. Have faith, even if your onc. doesn't always show any.
  • shortscake
    shortscake Member Posts: 228
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    scans
    Hello and how is everyone? I went to see my onc on monday and he said that we will redo all my scans in march i have been having chemo since nov09 he wants to make sure the chemo is working, i am on my 2nd set of treatment i have to do 3 total for now then the surgeon and onc will see what steps will be next.I am happy to know that he wants to redo the scans to make sure things are working. I think i would ask him lets do the scans just for my own to know things are working. They do draw blood every time i go for chemo but that's just to check my blood count.wishing you the best...girl power
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
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    Marlene
    So sorry your doctor left you feeling so unsupported, but like others my onco also told me that she was not planning to run any scans or other tests other than regular mammos and possibly MRIs once my treatment is finished.

    If you do feel like you're not getting the support or answers that feel right to you, don't be afraid to tell your doctor that. If you do that and still don't feel comfortable, it's never too late to consult with another doctor if it will give you peace of mind.

    (((HUGS)))
    Cindy
  • RE
    RE Member Posts: 4,591 Member
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    Vibes
    Hello Marlene, time has changed how the doctors treat cancer patients. I started with cancer treatment in 97, back then they did bone scans, CT scan, blood work and the occasional PET scan done approx. once a year. I have had three cancer battles the first two were during the times when all he scans were done yearly. The third time my cancer returned was in 07 and that is when I discovered the cancer world had reconsidered how they manage patients in the long term, most oncos no longer do follow up scans. Now I LOVE my onco he has kept me alive for 13 years and I trust him immensely. I will admit I have a problem with not having scans, but I also must say when I have had problems they did leap into action with by doing an ultra sound, blood work, colonoscopy and endoscopy which all looked good and gave me some mental relief. My doctor has explained that the "new" way the cancer docs look at managed care of survivors is that time has proven that over the years it has become evident to them (maybe not us but them who see many of us) that the annual scans are not truly finding new cancers but is subjecting us to rads we may not need, costs incurred we may not need and could be more harmful than good. They are going with the "we know our bodies best" type idea that is something is wrong we will know it, we will sound the alarm and in many cases that is true. For me it has boiled down to listening intensely to what my body is saying to me, if something is odd to me or hurts I am in the doctors office complaining. I am not a pest to my doctors (well maybe sometimes I am :-D) but I am firm in my conviction to have tests done and to be sure they are doing all they can do to assure me that I am healthy. I suppose what I am saying is that once all treatment is over and we are sort of on our own it is our responsibility to do all we can to know we getting the care we need to continue living.

    In regards to your doctor I think I would express my concern to him that perhaps you are not understanding what it is he is stating, does he or does he not think the treatment plan he has put you through is working and what is the basis of his opinion in regards to the answer he gives you. It is important to know and understand where you are, tell him you are looking for a comfort level and need to know his honest opinion, does he believe your treatment is working and if he does how are the two of you to proceed to ensure your health remains well, sugar coating does not work well with this type of illness yet honesty goes far.

    Now all that said if it does spread and you become a stage 4 you can live a long time and live well, I was stage 4 in 98 with cancer to my chest wall and sentinel node. I did have a recurrence (my doc said it was not recur but new cancer) in 07 and and currently doing well. Please never lose hope and always live life to enjoy it, cancer does not have a right to our happiness. Sorry if I rambled a bit.

    RE
  • Marlene_K
    Marlene_K Member Posts: 508
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    RE said:

    Vibes
    Hello Marlene, time has changed how the doctors treat cancer patients. I started with cancer treatment in 97, back then they did bone scans, CT scan, blood work and the occasional PET scan done approx. once a year. I have had three cancer battles the first two were during the times when all he scans were done yearly. The third time my cancer returned was in 07 and that is when I discovered the cancer world had reconsidered how they manage patients in the long term, most oncos no longer do follow up scans. Now I LOVE my onco he has kept me alive for 13 years and I trust him immensely. I will admit I have a problem with not having scans, but I also must say when I have had problems they did leap into action with by doing an ultra sound, blood work, colonoscopy and endoscopy which all looked good and gave me some mental relief. My doctor has explained that the "new" way the cancer docs look at managed care of survivors is that time has proven that over the years it has become evident to them (maybe not us but them who see many of us) that the annual scans are not truly finding new cancers but is subjecting us to rads we may not need, costs incurred we may not need and could be more harmful than good. They are going with the "we know our bodies best" type idea that is something is wrong we will know it, we will sound the alarm and in many cases that is true. For me it has boiled down to listening intensely to what my body is saying to me, if something is odd to me or hurts I am in the doctors office complaining. I am not a pest to my doctors (well maybe sometimes I am :-D) but I am firm in my conviction to have tests done and to be sure they are doing all they can do to assure me that I am healthy. I suppose what I am saying is that once all treatment is over and we are sort of on our own it is our responsibility to do all we can to know we getting the care we need to continue living.

    In regards to your doctor I think I would express my concern to him that perhaps you are not understanding what it is he is stating, does he or does he not think the treatment plan he has put you through is working and what is the basis of his opinion in regards to the answer he gives you. It is important to know and understand where you are, tell him you are looking for a comfort level and need to know his honest opinion, does he believe your treatment is working and if he does how are the two of you to proceed to ensure your health remains well, sugar coating does not work well with this type of illness yet honesty goes far.

    Now all that said if it does spread and you become a stage 4 you can live a long time and live well, I was stage 4 in 98 with cancer to my chest wall and sentinel node. I did have a recurrence (my doc said it was not recur but new cancer) in 07 and and currently doing well. Please never lose hope and always live life to enjoy it, cancer does not have a right to our happiness. Sorry if I rambled a bit.

    RE

    THANK YOU!
    Once again, thank you to all my dear pink sisters! I can rest a bit easier tonight knowing that what he is recommending is common practice. After reading all the posts, I'm guessing whenever I've heard about a scan after chemo, it was because they needed to check to see if the tumor was shrinking? I had a mastectomy back on August 27th. I have read many posts that they had 'clear margins'. I don't know if mine was but imagine if I didn't, I would've known it?? RE, I don't believe my doctor has any idea whether or not the treatment is working. How could he? Of course, we are only going after the microscopic cells that "could have" been floating. I had a petscan before surgery and it only showed cancer in my breast and nodes... I had 4 out of 21 nodes positive. I also had bloodwork right before chemo which indicated there was no active cancer cells at the time. My oncologist has an excellent reputation but I guess doesn't have real good bedside manner or just plain doesn't know how to 'talk' to his patients. I can't imagine I'll stay with him for life, but you ladies have helped me accept that he's doing the 'right' thing.

    Good night... I'll be sleeping much more peacefully tonight thanks to you wonderful women!

    BIG HUGS ~ Mar
  • New Flower
    New Flower Member Posts: 4,294
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    Marlene
    So sorry your doctor left you feeling so unsupported, but like others my onco also told me that she was not planning to run any scans or other tests other than regular mammos and possibly MRIs once my treatment is finished.

    If you do feel like you're not getting the support or answers that feel right to you, don't be afraid to tell your doctor that. If you do that and still don't feel comfortable, it's never too late to consult with another doctor if it will give you peace of mind.

    (((HUGS)))
    Cindy

    Marlene did you have your surgery before Chemo?
    My oncologist told me that I do not need any scans if I do not have any symptoms or complaints. My surgery was before Chemo with clear margins and my both scans were negative (except breast). I think he is following ACS and NCI on scans. But I have 3 moths follow- up visits with blood work and tumor markers test. There is no excuse for poor communication and lack of compassion.
    New Flower
  • pattimc
    pattimc Member Posts: 431
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    Scans
    I asked my onco last week too about any pet scans. She said that they don't routinely do them anymore. Unless I started up with some unexplained pain or something they don't do them. I do have a mammo set for June.
  • deanerick
    deanerick Member Posts: 7
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    Marlene_K said:

    THANK YOU!
    Once again, thank you to all my dear pink sisters! I can rest a bit easier tonight knowing that what he is recommending is common practice. After reading all the posts, I'm guessing whenever I've heard about a scan after chemo, it was because they needed to check to see if the tumor was shrinking? I had a mastectomy back on August 27th. I have read many posts that they had 'clear margins'. I don't know if mine was but imagine if I didn't, I would've known it?? RE, I don't believe my doctor has any idea whether or not the treatment is working. How could he? Of course, we are only going after the microscopic cells that "could have" been floating. I had a petscan before surgery and it only showed cancer in my breast and nodes... I had 4 out of 21 nodes positive. I also had bloodwork right before chemo which indicated there was no active cancer cells at the time. My oncologist has an excellent reputation but I guess doesn't have real good bedside manner or just plain doesn't know how to 'talk' to his patients. I can't imagine I'll stay with him for life, but you ladies have helped me accept that he's doing the 'right' thing.

    Good night... I'll be sleeping much more peacefully tonight thanks to you wonderful women!

    BIG HUGS ~ Mar

    not routine is sad. we

    not routine is sad. we accepted what my wife's ocol. said after first stage 3 treatment ended in 3/09. 12/09 went to other breast and now probably stage iv - still testing.

    we need to change doc's to say the least. tired of dr. saying we dont do this, we don't do that. all they do is paint by numbers, and apparently don't want to see any more cancer in you to do more work or know that it will come back and just like to wait it out....

    our case, this was faulty. they should have done scan's afterword. mammos dont do a thing routinely.

    if dr. says no. ask to explain why and in depth. they like to generalize and talk down to patients. lord, knows if we did not have access to online reports and labs, we would be completely in dark.
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
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    Hi, Marlene. I am told the
    Hi, Marlene. I am told the same information as the others regarding any scans. I finished rads late December and have just recently started Arimidex. My onc has ordered a bone density test to have a baseline to use as Arimidex can cause bone loss. Other than that, I have nothing scheduled until my mammogram in June. Good luck your last chemo treatment tomorrow.
  • mimivac
    mimivac Member Posts: 2,143 Member
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    Hi Marlene
    I have never had a PET Scan. Had surgery, chemo, rads. Now I have yearly MRIs and mammograms/sonograms every 6 months. I also have a blood test with tumor markers done every 3 months. Your oncologist is right that scans are not recommended unless there are symptoms. I am completely fine with that. I'm going to be frank right now: There is not much evidence that catching Stage IV cancer earlier rather than later extends or improves life. Not that one can't have a long and fruitful life with Stage IV. Just that scanning for it frequently doesn't improve outcomes. I did have a bone scan because of hip pain that would not go away. It was clear. Oncologists don't like to discuss Stage IV cancer with their early stage patients. It causes a lot of anxiety and may never happen. The fact that your doctor skirted the question does not mean that he thinks something bad will happen to you. My doctor can barely say "metastatic" to me. She mumbles the word and moves on quickly. Don't worry.

    Mimi
  • Rague
    Rague Member Posts: 3,653 Member
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    Before starting chemo in Aug
    Before starting chemo in Aug 09, I had so many scans it seems like I can't remember them all. (Not true I do remember all of them LOL - there were just so many that it seems like it.) Since then, the only scan (a CT scan) I've had, was ordered by the radiologist and done the day of the 11th Taxol (2 weeks ago tomorrow) to be sure what he was dealing with after the chemo. It turned out great and I start rads tomorrow for 5 weeks.

    We're all different and different cancers 'behave' differently.
  • girls4444
    girls4444 Member Posts: 34
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    scans
    I had a pet scan prior to starting chemo, and my oncologist told me that I would have another one in between completing chemo and my surgery. I have one tumor that you can feel has shrunk but my other two tumors you can not feel due to where they are at, so I think it is important to do this scan. You shouldn't leave anything to chance.
    betty
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
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    Marlene_K said:

    THANK YOU!
    Once again, thank you to all my dear pink sisters! I can rest a bit easier tonight knowing that what he is recommending is common practice. After reading all the posts, I'm guessing whenever I've heard about a scan after chemo, it was because they needed to check to see if the tumor was shrinking? I had a mastectomy back on August 27th. I have read many posts that they had 'clear margins'. I don't know if mine was but imagine if I didn't, I would've known it?? RE, I don't believe my doctor has any idea whether or not the treatment is working. How could he? Of course, we are only going after the microscopic cells that "could have" been floating. I had a petscan before surgery and it only showed cancer in my breast and nodes... I had 4 out of 21 nodes positive. I also had bloodwork right before chemo which indicated there was no active cancer cells at the time. My oncologist has an excellent reputation but I guess doesn't have real good bedside manner or just plain doesn't know how to 'talk' to his patients. I can't imagine I'll stay with him for life, but you ladies have helped me accept that he's doing the 'right' thing.

    Good night... I'll be sleeping much more peacefully tonight thanks to you wonderful women!

    BIG HUGS ~ Mar

    Clear Margins
    Marlene -

    I'm not sure if they even look at margins with a mastectomy. I know they do with a lumpectomy to ensure they have gotten all of the cancer with the excision.

    If they do look at margins on a mastectomy, it should be in your final pathology report. This is a question you can ask your oncologist about the next time you see him.

    Glad you're at least feeling and sleeping better - the lack of information and knowledge is the scariest part of this!

    Take care,
    Cindy
  • New Flower
    New Flower Member Posts: 4,294
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    Clear Margins
    Marlene -

    I'm not sure if they even look at margins with a mastectomy. I know they do with a lumpectomy to ensure they have gotten all of the cancer with the excision.

    If they do look at margins on a mastectomy, it should be in your final pathology report. This is a question you can ask your oncologist about the next time you see him.

    Glad you're at least feeling and sleeping better - the lack of information and knowledge is the scariest part of this!

    Take care,
    Cindy

    Yes, they do look for clear margins after mastectomy
    if the margins are not clear they should continue re-exsision until they feel comfortable.