Post TX questions

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  • Lorikat
    Lorikat Member Posts: 681 Member
    #22
    NYinTX said:

    Marynb scans

    I'm still at wk5 for first chemoradiation at MDAnderson. I am being scheduled for chest/abdomen/pelvic CAT scans every 3 months. This is disturbing to me as well. But MDAnderson dismisses my concerns......there are some lung opacities which they want to monitor for change, my benign thyroid nodules have been changing size as well.....I'm t3n0m0 so far but that is all speculative as there are hundreds of lymph nodes and changes can be microscopic not visible on CAT scan or any other scan......

    I'm quite uncertain about agreeing to q3mos scans....and I have to travel 200 miles from home to get to MDAnderson in Houston, so appts are not easy or cheap, as they involve hotel stays......I see no reason for being seen by radonc and surg and medonc and anybody else only to be told face to face results of cat scans.....I'm wondering if I can have a cat scan at home and then make appts for one day to review results. MDAnderson wants to do all inhouse as they do not trust "outside" scans. Isn't a scan a scan a scan? Not much individual discretion in the scan machine, I thought, unlike the radiation machines.

    I'm surprised Mayrnb that you haven't had any post Tx scans? would the scans have picked up the second tumor sooner?

     

     

     

    I travel 800 miles to Houston

    I travel 800 miles to Houston every three months.  The scans from my hometown were notlegible.

  • LaCh
    LaCh Member Posts: 557
    #23
    OMG 1012 said:

    followup

    RadOnc 2 weeks after TX ended and then 4 months

    Chemo Dr.  6 weeks after TX ended and then 6 months

    ALSO had a CT scan at 6 weeks

    Colon Rectal Surgeon (who did not do surgery but is my NEW go to Dr, because he checked me after my routine hemmy surgery showed cancer)

    6 weeks after TX ended he did a visual inspection and decided that I was to little and it would probable hurt to much that he scheduled a visit to the OR for a scope???

    and within the next month I will go to the OR for a complete exam and he decided to do a colonoscopy of me since I am  "at that age" and I will be under anethesia anyway for the EUA.

    Also scheduled visit with Gynocologist (wanted my area checked)--saw him last May but he had me come right in---test results due tomorrow.

    not a recommendation...

    ...just what I've chosen to do regarding followup. I don't recommend anything to anyone since these things are individual decisions, just as how much autonomy and self direction one wants away from one's doctors.  I've "fired" both my medical and radiation oncologists and don't expect to see either one again.  My gastroenterologist, a saint that fell off a cloud, has urged for a PET scan in a few months (I'm one month past Tx) and I told her "there will be no more PET scans," and the reason. "I've done a risk/benefit analysis"--yes, I have--"and I've deemed the benefit not worth the risk." I've told her that she's welcome to do as many biopsies as she wants and she's promised to revisit the PET scan question again, but I have no plans to have any.  In a for-profit system and a super litigious culture, it can be hard to separate medically indicated proceedures from those driven by profit and fear of prosecution (for perceived negligence if things go wrong).  For my part, I assume that my tumor is gone.  I'll have biopsies so that my gastroenterologist can know that too. But this is what I've chosen to do and don't advise it for anyone else. We all choose what feels right to us. This is what feels right to me. 

  • Marynb
    Marynb Member Posts: 1,118
    #24
    RoseC said:

    Hi

    As I understand it (and I'm not a doctor, just an attentive patient), a scan is not just a scan. The doctors rely on the radiologist to read the scan, thus having it done at MD versus another facility may be of importance to them. Also important is the capability of those performing the scan. One radiologist may not be as capable as the next in capturing the necessary information.

    As to Marynb's secondary cancer (which, Marynb, I hope gets resolved without additional pain or trauma or anything of the sort), I think it would depend on where it was. The catscan and petscan are localized and if the secondary cancer was outside of the scan area, no, it wouldn't have been detected.

    Scans
    Hi, I agree that all scans are not the same and a lot depends on the equipment and skill of the doctors reading the scans.

    In my case, my second cancer is unrelated and was picked up on a highly specialized scan, not available at all hospitals.
  • Marynb
    Marynb Member Posts: 1,118
    #25
    RoseC said:

    Hi

    As I understand it (and I'm not a doctor, just an attentive patient), a scan is not just a scan. The doctors rely on the radiologist to read the scan, thus having it done at MD versus another facility may be of importance to them. Also important is the capability of those performing the scan. One radiologist may not be as capable as the next in capturing the necessary information.

    As to Marynb's secondary cancer (which, Marynb, I hope gets resolved without additional pain or trauma or anything of the sort), I think it would depend on where it was. The catscan and petscan are localized and if the secondary cancer was outside of the scan area, no, it wouldn't have been detected.

    Scans
    Hi, I agree that all scans are not the same and a lot depends on the equipment and skill of the doctors reading the scans.

    In my case, my second cancer is unrelated and was picked up on a highly specialized scan, not available at all hospitals.
  • mp327
    mp327 Member Posts: 4,440 Member
    #26
    LaCh said:

    not a recommendation...

    ...just what I've chosen to do regarding followup. I don't recommend anything to anyone since these things are individual decisions, just as how much autonomy and self direction one wants away from one's doctors.  I've "fired" both my medical and radiation oncologists and don't expect to see either one again.  My gastroenterologist, a saint that fell off a cloud, has urged for a PET scan in a few months (I'm one month past Tx) and I told her "there will be no more PET scans," and the reason. "I've done a risk/benefit analysis"--yes, I have--"and I've deemed the benefit not worth the risk." I've told her that she's welcome to do as many biopsies as she wants and she's promised to revisit the PET scan question again, but I have no plans to have any.  In a for-profit system and a super litigious culture, it can be hard to separate medically indicated proceedures from those driven by profit and fear of prosecution (for perceived negligence if things go wrong).  For my part, I assume that my tumor is gone.  I'll have biopsies so that my gastroenterologist can know that too. But this is what I've chosen to do and don't advise it for anyone else. We all choose what feels right to us. This is what feels right to me. 

    LaCh

    You are right, we all have to choose what we feel is right.  Unlike you, I choose not to have any biopsies unless something of concern is found on a follow-up exam.  My colorectal doctor and rad onc both share this opinion.  The problem with biopsies is the potential for slow or non-healing due to the radiation.  I say if nothing looks suspicious, don't go messing with it.  But that's just my opinion.  As for scans, my med onc is a big fan of them and I am due for another one in about 3 months.  He told me the real blast of radiation came when I got treatment, not from the scans.  I don't know if that's true, but my friend who is a radiologist concurs.  That said, I know there is still risk with scans, just as there is with follow-up biopsies.  Neither come without the potential for problems.  The bottom line is we have to do what we feel is best for us.

  • LaCh
    LaCh Member Posts: 557
    #27
    mp327 said:

    LaCh

    You are right, we all have to choose what we feel is right.  Unlike you, I choose not to have any biopsies unless something of concern is found on a follow-up exam.  My colorectal doctor and rad onc both share this opinion.  The problem with biopsies is the potential for slow or non-healing due to the radiation.  I say if nothing looks suspicious, don't go messing with it.  But that's just my opinion.  As for scans, my med onc is a big fan of them and I am due for another one in about 3 months.  He told me the real blast of radiation came when I got treatment, not from the scans.  I don't know if that's true, but my friend who is a radiologist concurs.  That said, I know there is still risk with scans, just as there is with follow-up biopsies.  Neither come without the potential for problems.  The bottom line is we have to do what we feel is best for us.

    no concrete reason

    ...not to worry about any of it, but I'm not, not with slow healing from biopsies nor with recurrance nor with other problems. I just feel like it's a finished chapter in my life. Maybe I'm right, maybe I'm wrong but it's just how I feel. 

  • OMG 1012
    OMG 1012 Member Posts: 61
    #28
    LaCh said:

    no concrete reason

    ...not to worry about any of it, but I'm not, not with slow healing from biopsies nor with recurrance nor with other problems. I just feel like it's a finished chapter in my life. Maybe I'm right, maybe I'm wrong but it's just how I feel. 

    I am reluctant

    to keep seeing all these Dr's as well.

    I think I will most likely cancel my RAD ONC appt--what more can they do now?  4 months after TX?

    also the chemo Dr.  feel I am done their as well especially since I didnt even get to see my Dr after all I have been through!

    they sent in a nurse that I have never seen before ( I am pissed about this!) I really liked that Dr too--but for her to not take the time to see me after TX

    I think is RUDE!  and I have no use for a Dr that doent follow up "personally" and I know she was their cause I saw her!

    I do believe I will stick with the Colon rectal surgeon, I found him accidently (when the Hemmy turned out to be Cancer)

    and he is awesome.  PLUS I will need to see him every few yrs anyways for colonoscopys.

    I dont think it is necessary to see Rad Onc and chemo Dr anymore (and hope I never have the need to again!)

    on the 10th it will be 2 months post TX and I feel pretty darn good :)

    fatigue is slowly diminishing---

    if anyone thinks I need to be more concerned about seeing my Dr's please let me know 

    I appreciate ALL your opinions and posts

    Thanks

     

  • AZANNIE
    AZANNIE Member Posts: 445 Member
    #29
    OMG 1012 said:

    I am reluctant

    to keep seeing all these Dr's as well.

    I think I will most likely cancel my RAD ONC appt--what more can they do now?  4 months after TX?

    also the chemo Dr.  feel I am done their as well especially since I didnt even get to see my Dr after all I have been through!

    they sent in a nurse that I have never seen before ( I am pissed about this!) I really liked that Dr too--but for her to not take the time to see me after TX

    I think is RUDE!  and I have no use for a Dr that doent follow up "personally" and I know she was their cause I saw her!

    I do believe I will stick with the Colon rectal surgeon, I found him accidently (when the Hemmy turned out to be Cancer)

    and he is awesome.  PLUS I will need to see him every few yrs anyways for colonoscopys.

    I dont think it is necessary to see Rad Onc and chemo Dr anymore (and hope I never have the need to again!)

    on the 10th it will be 2 months post TX and I feel pretty darn good :)

    fatigue is slowly diminishing---

    if anyone thinks I need to be more concerned about seeing my Dr's please let me know 

    I appreciate ALL your opinions and posts

    Thanks

     

    OMG1012

    I continue to see my colorectal dr and med oncologist. I don't see the rad onc anymore - didn't particularly care for him anyway. I like the other two doctors. I'm 21 months post treatment.

    Ann

  • pializ
    pializ Member Posts: 508 Member
    #30
    follow up

    I completed treatment on 25th January. At almost 4 weeks post TX I was reviewed by Oncologist and had DRE. I am due an MRI scan on 15th March and examination under anaesthetic on 15th April. I had a diagnosis of anal cancer including 2 lymph noes in the pelvis. I live in Wales and my oncologist will see me monthly initially with colorectal surgeon being involved in an ad hoc sort of way.  

  • sephie
    sephie Member Posts: 650 Member
    #31
    NYinTX said:

    Marynb scans

    I'm still at wk5 for first chemoradiation at MDAnderson. I am being scheduled for chest/abdomen/pelvic CAT scans every 3 months. This is disturbing to me as well. But MDAnderson dismisses my concerns......there are some lung opacities which they want to monitor for change, my benign thyroid nodules have been changing size as well.....I'm t3n0m0 so far but that is all speculative as there are hundreds of lymph nodes and changes can be microscopic not visible on CAT scan or any other scan......

    I'm quite uncertain about agreeing to q3mos scans....and I have to travel 200 miles from home to get to MDAnderson in Houston, so appts are not easy or cheap, as they involve hotel stays......I see no reason for being seen by radonc and surg and medonc and anybody else only to be told face to face results of cat scans.....I'm wondering if I can have a cat scan at home and then make appts for one day to review results. MDAnderson wants to do all inhouse as they do not trust "outside" scans. Isn't a scan a scan a scan? Not much individual discretion in the scan machine, I thought, unlike the radiation machines.

    I'm surprised Mayrnb that you haven't had any post Tx scans? would the scans have picked up the second tumor sooner?

     

     

     

    different machines also

    no a scan is not a scan.....machines are upgraded at MDA.... the experience is far more at such an institution.... when i was diagnosed in 2009 , even tho  the protocol for anal cancer has been the same for 35 years,(with fewer APR surgeries),,  MDA had seen over 700 at the time where as some places had seen 5  or 10 or even just 2.... it is very hard to travel.... i only have to go 400 miles but it is worth it if you can do it..... also, at MDA,  they told me that after 2 years ,, the main doc in charge was the radiation team.... sounded odd to me but that is what i was told.... check into some of the other places to stay close by that might be less expensive....perhaps they would do your cat scans every 6 months instead of 3.... just ask....  thinking of you....sephie

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