What happens after treatment ends and monitoring begins?

StruTanToot
StruTanToot Member Posts: 126 Member
in Anal Cancer #1
My last radiation treatment is Monday, Oct. 8. You all have been so incredible in helping me through the fear, the pain, the lack of knowledge...on and on and on.

Now for yet another question. I met with my radiation oncologist for the last time and asked "what happens next?" In three months, I will have a PET scan and will see the radiation and chemo oncologists and the surgeon. The doc said that all three will monitor me.

First question...why all three?

Also, when I started treatment, the docs said they were going for the "cure." I asked him how will they know if I'm cured. He talked about being monitored for two years. Then he said some things I really didn't understand and I was not feeling good, so I didn't ask a lot of questions.

I do trust my doc, and although this doesn't matter in the scheme of things, I know other people will be asking me if "they got it."

The doc seemed to say that there might/will be things that happen down there, but they find that things down there "usually regress" and that they really keep an eye on things.

Instead of rambling, let me try to get to the bottom line...I thought after treatment that they would do the scans, the DREs, etc and would be able to say it's all gone. That doesn't seem to be the case.

Can anyone educate me on what happens next and what to expect? Also, is it this way with most cancers?

One thing I've learned from this experience is that some people are truly insensitive, inconsiderate, and nosy. I'm sure I have been that way at times in my life. People who ask these questions literally exhaust me and make me angry as well. They don't ask out of concern for me, but they want to be in the know and be able to gossip.

Anyway...I've told most people like that that I have colorectal cancer. Is the follow up to rectal cancer similar to the follow up for anal cancer?

Sorry the long post...any info on how things are monitored or how one is considered NED would be helpful. It seems strange to me that I have to wait three months and still might not know. Oh yeah...the doc said he figured my question was really if I will have to have a colostomy. Then he talked about all the monitoring and didn't mention it again.

Thank you for any help

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
    After treatment....
    Congrats on coming to an end with your treatment! The after treatment emotional rollercoaster can be quite a ride also. There will be scans, lab work, and physical exams to moniter your progress. It will move from every 3months to every 6 and eventually less often. I had my colostomy prior to beginning treatment and as of yet have not been able to have reversed. (1.5 yrs now) My guess would be that although bowel movements will be painful at first, as you heal, and you will soon after radiation ends, you will be ok that way. As you know, we all react different to treatment. Some have more long term side effects than others, especially from pelvic radiation. I found it very hard to explain to other people that yes, I looked good, but inside I still had a lot of healing to do. My 1yr PET scan was NED on the Anal Cancer, so that was great, but....to me it meant just that, no "evidence" of the disease at the time of the scan. I don't often call myself a survivor, or say I am cancer free. Everyone feels different about those terms. Cancer not only effected my body, but my mind. There is no evidence in the body, but I don't think my emotional scan will or maybe even should ever be NED. Life happens, and we move forward though. You will still need patience, healing does come in time. Eat healthy, drink plenty of fluids, exercise, and appreciate life, because you have a lot of it to live yet! Things become normal again, and your body will rebound. Again, patience! I once said, that in a wierd way cancer was one of the greatest blessings in my life, tho I must have been having a really good day (lol), it has introduced me to some life long friends and forced me to look at life from a new perspective with a stronger appreciation for many things. Stay strong as you enter this next phase of this journey. As always, all in my prayers.
  • Lorikat
    Lorikat Member Posts: 681 Member
    #3
    eihtak said:

    After treatment....
    Congrats on coming to an end with your treatment! The after treatment emotional rollercoaster can be quite a ride also. There will be scans, lab work, and physical exams to moniter your progress. It will move from every 3months to every 6 and eventually less often. I had my colostomy prior to beginning treatment and as of yet have not been able to have reversed. (1.5 yrs now) My guess would be that although bowel movements will be painful at first, as you heal, and you will soon after radiation ends, you will be ok that way. As you know, we all react different to treatment. Some have more long term side effects than others, especially from pelvic radiation. I found it very hard to explain to other people that yes, I looked good, but inside I still had a lot of healing to do. My 1yr PET scan was NED on the Anal Cancer, so that was great, but....to me it meant just that, no "evidence" of the disease at the time of the scan. I don't often call myself a survivor, or say I am cancer free. Everyone feels different about those terms. Cancer not only effected my body, but my mind. There is no evidence in the body, but I don't think my emotional scan will or maybe even should ever be NED. Life happens, and we move forward though. You will still need patience, healing does come in time. Eat healthy, drink plenty of fluids, exercise, and appreciate life, because you have a lot of it to live yet! Things become normal again, and your body will rebound. Again, patience! I once said, that in a wierd way cancer was one of the greatest blessings in my life, tho I must have been having a really good day (lol), it has introduced me to some life long friends and forced me to look at life from a new perspective with a stronger appreciation for many things. Stay strong as you enter this next phase of this journey. As always, all in my prayers.

    Eihtah..
    I so agree with everything you said in your post. I do not think any of us will ever be emotionally NED. I was going to get a small survivor tattoo after I was told I was in remission... However I am afraid to jinx things, maybe speak too soon? (anyway, it would probably hurt and I have had enough of that! LOL). Lorikat
  • Dog Girl
    Dog Girl Member Posts: 100
    #4
    follow up care
    I believe that the followup procedures have changed somewhat since I was treated in 2009, but I have gone to my colorectal doctor who either performs a DRE or an anoscopy. I get blood work and CT scans (chest, abdomen; pelvic) ordered by my medical oncologist. (I think the CT scans are no longer prescribed and this should be my last one.) If Anal Cancer spreads, it usually goes to the lymph nodes first and then either to the lungs or to the liver. I went back to my Radiation oncologist one time and he just checked to see how my skin was healing. (I burned quite badly; everything was blistered so I got all new skin. :)). (Note that radiation keeps working after treatments ends and if you do have CT scans you can still have what appears to be "hot spots" which are where the radiation is still active.)

    My understanding is that if anal cancer reoccurs, it is generally within the first two years. And I believe there is a high probability that if it does come back it comes back generally in the same area as the initial tumor. The DREs and anoscopy will keep a close eye on that. If it does come back in the anal canal, surgery is generally recommended which would mean a permanent colostomy. I can't say what happens if it spreads to the liver or the lungs. You will probably become acquainted with what we call "Scanxeity" which means we get all wigged out when a followup is scheduled (fearing hearing bad news) and definitely between the time of the test and getting the results. My wish for you is the same as for all of us; NED forever!
  • Marynb
    Marynb Member Posts: 1,118
    #5
    Yay! You are almost done! Congratulations! So glad for you
    Thank God you are almost at the end! I hope that your body heals quickly. I am one year post treatment. I see the Radiologist, Oncologist, and surgeon every 3 months. They do a DRE, and a scope. After I was treated for anal cancer, they discovered that I also had another cancer which is much more difficult to treat and for which there is no known treatment, other than surgery, which I had. Soooo, my follow ups also involve several tests that are unrelated to the anal. My understanding is that the first two years are critical, but that the rate of remission is relatively high for anal depending on the stage at treatment. Sounds like you are in good hands.

    Take time to let your body heal. I made the mistake of trying to do too much too soon and crashed. I am so glad you are almost done!
    Plenty of rest, moderate exercise, eat protein to encourage healing, plenty of water, and not too much fiber for awhile.
    Hugs.

    Mary
  • mxperry220
    mxperry220 Member Posts: 496 Member
    #6
    Answer To Your First Question
    Each doctor has their own expertise. If your doctors are like mine the chemo doctor will monitor your blood counts, radiation doctor will use PET scans to see if cancer recurs, surgeon will make visual exams of your anus - DREs and scope. This was done every three months for first two years with the exception of PET scans. Then the chemo and surgeon went to every six months for the next year. I am now 3 years 8 months plus post treatment and am on annual exams. You will probably be examined once a years for the rest of your life.
    Mike
  • 7243
    7243 Member Posts: 249 Member
    #7
    Follow-up
    Your care and treatment was inter-diciplinary (oncologist, radiation oncologist, surgeon) and will continue that way for some time. As another friend stated, each specialist has their "focus" ... so this is a great way to be cared for. Did you go with Duke for treatment? If so ... they generally prescribe PET-CT, anoscopy, and lab work every 3 - 4 months for the first two years. Sadly, you'll only get a PET if your insurance pays for it or if you choose to pay for it yourself. There is little research that supports ongoing PET for the follow-up of anal cancer. Anal cancer is a rare cancer and there is not a lot of new research regarding follow-up and the treatment is pretty standardized to chemo-radiation. Some insurance companies WILL pay for PET beyond the initial 3 month post-treatment studies ... others will not. And frankly the NCCN Guidelines do not recommend scanning, so many insurance companies deny the study based on lack of "evidence". Your follow-up schedule will be personalized to "you" between you and your care team. So, you'll see different regimes/schedules discussed here. Look at the NCCN Anal Cancer guideline for recommended follow-up ... it is helpful, however nothing replaces working with your care team. Trust your team to the decisions and use your energy to heal and rest. Best wishes to you ... post treatment is difficult for some. You've been so focused on fighting the disease with chemo-radiation, you've had daily contact with your team ... especially your radiation treatment team. There can be some anxiety as you're alone now ... trying to heal. I hope you have a strong support system, perhaps might try meditation, guided imagery or get support through your religious or spiritual circle. Hang in there ... also, look into support groups focused on "post treatement".

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