Newly diagnosed

csalek
csalek Member Posts: 23 Member
in Anal Cancer #1

I just was diagnosed with anal cancer and will not be able to see the oncologist for over a week and the radiologist for 2 weeks...I am so nervous and that seems like such a long way  out. Is this normal...thanks for being here guys !

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    csalek

    I'm sorry to hear of your diagnosis.  I posted a comment on the other thread by Sunflower Lady where you commented, so I won't repeat myself here.  It takes time, so be patient and you will begin treatment before you know it.  This treatment is very effective and you have every reason to be encouraged that in a couple of months you will have completed treatment and won the battle.  I am a 7+ year survivor, if that gives you any encouragement.

    I wish you all the best and hope you'll keep us posted on your journey.  We are here to help you through it, so do not hesitate to ask questions and seek advice.  Good luck!

    Martha

  • csalek
    csalek Member Posts: 23 Member
    #3
    mp327 said:

    csalek

    I'm sorry to hear of your diagnosis.  I posted a comment on the other thread by Sunflower Lady where you commented, so I won't repeat myself here.  It takes time, so be patient and you will begin treatment before you know it.  This treatment is very effective and you have every reason to be encouraged that in a couple of months you will have completed treatment and won the battle.  I am a 7+ year survivor, if that gives you any encouragement.

    I wish you all the best and hope you'll keep us posted on your journey.  We are here to help you through it, so do not hesitate to ask questions and seek advice.  Good luck!

    Martha

    Thanks Martha-I will check

    Thanks Martha-I will check other post. I would have had it start today if I could...but I will be patient and know that it will not change that much and you are right in a couple of months I will have completed my treatment. Thanks again for taking the time ! I hope I can do it for someone else someday !

  • z
    z Member Posts: 1,414 Member
    #4
    csalek

    Welcome and sorry you had to join us.  I had a couple of weeks wait before starting treatment with second opinions and all.  The treatment starts working right away.  I completed treatment on 6-30-2009 Stage II anal cancer on the anal verge.  So far so good.  I wish you well and keep us posted.  Lori

  • nonichol
    nonichol Member Posts: 170
    #5
    Waiting

    Waiting time seems to be the norm. I am five years out and was late stage 3. Hang in there. This is a great place to gather info and prepare for treatment.

  • Tracy figg
    Tracy figg Member Posts: 36
    #6
    Hi i was just diagnois my

    Hi i was just diagnois my self im not sure if ontario any different but by the time they finish the first test and i seen radition dr and chemo dr it was three weeks now i have to do the other test for them so by the time im done this set of tests it well be 6 weeks and the treatment well start. Hope your well  be faster. 

  • JJV69
    JJV69 Member Posts: 2
    #7
    how are you doing now?

    Looks like we were diagnosed about the same time. I was diagnosed in early Nov. 2015 folllowing a colonoscopy I pushed for on 10/26. How are you doing? If it helps,  I finished Rad/ Chemo treatment 1/12/16 and have healed very well. I am now looking to see what's next. I am 99% successfully completed treatment of my stage IIIa AC. I am back at work, no pain  and  very few side effects so far. I am being encouraged to seek a second opinion by my surgeon and oncologist as my biopsy following treatment showed a very small area of non- aggressive cancer cells. I just have to decide on what to do with this remaining little bit of cancer. How relieved was I to hear the surgeon say that he didn't want to do surgery without another round of chemo only first. I understand it is protocol if the rad/ chemo do not fully eradicate the cancer, surgery is the next step. Does pursuing another round of chemo make sense? Seems reasonable to me. What I have left is so small it looks like a tiny star on my PET scan. So, I appreciate the surgeon's position and encouragment and  on my journey now to Sloan Kettering for a second opinion on 3/29. And, since it's my a** on the line, I have an appt at Roswell Park in Buffalo in early April just for a third opinion. I have learned you can be optimistic and assertive. So, back to you... How have you been managing? Have you completed your treatment?

     

  • nonichol
    nonichol Member Posts: 170
    #8
    JJV69 said:

    how are you doing now?

    Looks like we were diagnosed about the same time. I was diagnosed in early Nov. 2015 folllowing a colonoscopy I pushed for on 10/26. How are you doing? If it helps,  I finished Rad/ Chemo treatment 1/12/16 and have healed very well. I am now looking to see what's next. I am 99% successfully completed treatment of my stage IIIa AC. I am back at work, no pain  and  very few side effects so far. I am being encouraged to seek a second opinion by my surgeon and oncologist as my biopsy following treatment showed a very small area of non- aggressive cancer cells. I just have to decide on what to do with this remaining little bit of cancer. How relieved was I to hear the surgeon say that he didn't want to do surgery without another round of chemo only first. I understand it is protocol if the rad/ chemo do not fully eradicate the cancer, surgery is the next step. Does pursuing another round of chemo make sense? Seems reasonable to me. What I have left is so small it looks like a tiny star on my PET scan. So, I appreciate the surgeon's position and encouragment and  on my journey now to Sloan Kettering for a second opinion on 3/29. And, since it's my a** on the line, I have an appt at Roswell Park in Buffalo in early April just for a third opinion. I have learned you can be optimistic and assertive. So, back to you... How have you been managing? Have you completed your treatment?

     

    Second opinion

    I think a second opinion is a great plan. After all it is your a__ on the line as you say! 

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
    JJV69 said:

    how are you doing now?

    Looks like we were diagnosed about the same time. I was diagnosed in early Nov. 2015 folllowing a colonoscopy I pushed for on 10/26. How are you doing? If it helps,  I finished Rad/ Chemo treatment 1/12/16 and have healed very well. I am now looking to see what's next. I am 99% successfully completed treatment of my stage IIIa AC. I am back at work, no pain  and  very few side effects so far. I am being encouraged to seek a second opinion by my surgeon and oncologist as my biopsy following treatment showed a very small area of non- aggressive cancer cells. I just have to decide on what to do with this remaining little bit of cancer. How relieved was I to hear the surgeon say that he didn't want to do surgery without another round of chemo only first. I understand it is protocol if the rad/ chemo do not fully eradicate the cancer, surgery is the next step. Does pursuing another round of chemo make sense? Seems reasonable to me. What I have left is so small it looks like a tiny star on my PET scan. So, I appreciate the surgeon's position and encouragment and  on my journey now to Sloan Kettering for a second opinion on 3/29. And, since it's my a** on the line, I have an appt at Roswell Park in Buffalo in early April just for a third opinion. I have learned you can be optimistic and assertive. So, back to you... How have you been managing? Have you completed your treatment?

     

    JJV69

    Welcome to this group, although I'm sorry you have a reason to be here.  Congrats on being finished with your treatment.  One thing I would like to say is that radiation can continue to work up to 6 months after treatment ends, according to my radiation oncologist.  I would want to ask your doctors about that before undergoing more chemo or surgery.  Perhaps your doctor feels that additional chemo will enhance the power of any remaining radiation to kill the residual cancer cells you have.  If you are seeking an opinion from another doctor at Memorial Sloan Kettering, that's great.  It wouldn't happen to be Dr. Martin Weiser, would it?  The reason I ask is that one of our fellow posters here has seen him and, in her opinion, he is wonderful.  At any rate, I wish you all the very best and hope you'll keep us posted.  Take care.

    Martha

  • nonichol
    nonichol Member Posts: 170
    #10
    mp327 said:

    JJV69

    Welcome to this group, although I'm sorry you have a reason to be here.  Congrats on being finished with your treatment.  One thing I would like to say is that radiation can continue to work up to 6 months after treatment ends, according to my radiation oncologist.  I would want to ask your doctors about that before undergoing more chemo or surgery.  Perhaps your doctor feels that additional chemo will enhance the power of any remaining radiation to kill the residual cancer cells you have.  If you are seeking an opinion from another doctor at Memorial Sloan Kettering, that's great.  It wouldn't happen to be Dr. Martin Weiser, would it?  The reason I ask is that one of our fellow posters here has seen him and, in her opinion, he is wonderful.  At any rate, I wish you all the very best and hope you'll keep us posted.  Take care.

    Martha

    Second opinion

    I agree with Martha. I still had hot spots from radiation for awhile. So, get another opinion if you like to make an informed decision.

  • csalek
    csalek Member Posts: 23 Member
    #11
    JJV69 said:

    how are you doing now?

    Looks like we were diagnosed about the same time. I was diagnosed in early Nov. 2015 folllowing a colonoscopy I pushed for on 10/26. How are you doing? If it helps,  I finished Rad/ Chemo treatment 1/12/16 and have healed very well. I am now looking to see what's next. I am 99% successfully completed treatment of my stage IIIa AC. I am back at work, no pain  and  very few side effects so far. I am being encouraged to seek a second opinion by my surgeon and oncologist as my biopsy following treatment showed a very small area of non- aggressive cancer cells. I just have to decide on what to do with this remaining little bit of cancer. How relieved was I to hear the surgeon say that he didn't want to do surgery without another round of chemo only first. I understand it is protocol if the rad/ chemo do not fully eradicate the cancer, surgery is the next step. Does pursuing another round of chemo make sense? Seems reasonable to me. What I have left is so small it looks like a tiny star on my PET scan. So, I appreciate the surgeon's position and encouragment and  on my journey now to Sloan Kettering for a second opinion on 3/29. And, since it's my a** on the line, I have an appt at Roswell Park in Buffalo in early April just for a third opinion. I have learned you can be optimistic and assertive. So, back to you... How have you been managing? Have you completed your treatment?

     

    I completed treatment

    I completed treatment 3/3/16...glad it is over. My doctor says the tumor is shrinking and can take up to six months to go away completely. My insurance company refuses to pay for my three month PET scan...so I am not sure what I am going to do about that. I will be seeing my doctor who is monotoring the tumor with a scope in the beginning of May...and see what she has to say.

  • pializ
    pializ Member Posts: 508 Member
    #12
    csalek said:

    I completed treatment

    I completed treatment 3/3/16...glad it is over. My doctor says the tumor is shrinking and can take up to six months to go away completely. My insurance company refuses to pay for my three month PET scan...so I am not sure what I am going to do about that. I will be seeing my doctor who is monotoring the tumor with a scope in the beginning of May...and see what she has to say.

    Pet scan

    Congratulations on getting through treatment! 

    I live in Wales and have never had a PET scan. I was diagnosed through biopsy MRI & CT scans. My follow up has been DRE, examination under anaesthetic, MRI & CT scans. I am 3 years and 3 months post treatment for stage 3A AC. 

    From what I know about PET scans (which is very little), they can show 'hot spots' after treatment due to lingering effects of radiotherapy. I seem to recall that the positives of PET scans is that they show up everything. The downside is also that they show up everything.

    I hope your recovery is uneventful

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
    csalek said:

    I completed treatment

    I completed treatment 3/3/16...glad it is over. My doctor says the tumor is shrinking and can take up to six months to go away completely. My insurance company refuses to pay for my three month PET scan...so I am not sure what I am going to do about that. I will be seeing my doctor who is monotoring the tumor with a scope in the beginning of May...and see what she has to say.

    csalek

    I agree with Liz.  PET scans have their advantages and disadvantages.  For initial staging, they are great.  However, the problem with PET scans for follow-up is that they are SO sensitive that they show everything, which may be incorrectly read as remaining cancer when a hot spot shows up.  Hot spots can also be due to inflammation.  If I were you, I would find out if your insurance company will pay for a CT scan of your chest, abdomen and pelvis.  With that scan, your doctor will be able to see what your area of treatment looks like, along with the usual places this cancer spreads, to make sure your tumor is resolved and that there is no metastasis.  I have had many CT scans for follow-up, but never an MRI, so I do not know the value of an MRI in monitoring post-treatment, but I know many people have them, which might be another option for you and one your insurance would cover.  I hope you get it all resolved and can have the appropriate follow-up monitoring that will put your mind at ease.

    Martha

  • csalek
    csalek Member Posts: 23 Member
    #14
    pializ said:

    Pet scan

    Congratulations on getting through treatment! 

    I live in Wales and have never had a PET scan. I was diagnosed through biopsy MRI & CT scans. My follow up has been DRE, examination under anaesthetic, MRI & CT scans. I am 3 years and 3 months post treatment for stage 3A AC. 

    From what I know about PET scans (which is very little), they can show 'hot spots' after treatment due to lingering effects of radiotherapy. I seem to recall that the positives of PET scans is that they show up everything. The downside is also that they show up everything.

    I hope your recovery is uneventful

    Liz

    Thanks Liz for your info

    Thanks Liz for your info ....I would not want to know about a hot spot...I think I would be discouraged.  Thanks for your words of encouragement it is always nice to hear about those of you somfar pit of treatment.

  • csalek
    csalek Member Posts: 23 Member
    #15
    mp327 said:

    csalek

    I agree with Liz.  PET scans have their advantages and disadvantages.  For initial staging, they are great.  However, the problem with PET scans for follow-up is that they are SO sensitive that they show everything, which may be incorrectly read as remaining cancer when a hot spot shows up.  Hot spots can also be due to inflammation.  If I were you, I would find out if your insurance company will pay for a CT scan of your chest, abdomen and pelvis.  With that scan, your doctor will be able to see what your area of treatment looks like, along with the usual places this cancer spreads, to make sure your tumor is resolved and that there is no metastasis.  I have had many CT scans for follow-up, but never an MRI, so I do not know the value of an MRI in monitoring post-treatment, but I know many people have them, which might be another option for you and one your insurance would cover.  I hope you get it all resolved and can have the appropriate follow-up monitoring that will put your mind at ease.

    Martha

    Thanks Martha. As I

    Thanks Martha. As I mentioned...I would be discourged if I saw something show up after that treatment we all go through. I do like the idea of the CT scan.

    Peace of mind would be good !

  • clouse
    clouse Member Posts: 12
    edited October 2016 #16
    Csalek

    Csalek

    I am also newly diagnosed. The waiting can be a ****. 4 wks out of hospital (colostomy bag hooked up). Having chemo pump attached tomorrow. Had to wait almost a month in 2004 (breast cancer) because of hurricane Ivan. (Breast cancer free 12 yrs). Anal cancer not related. Hang in there. I just work it one day at a time. Let me know how your doing. It seems we will be close together treatment wise.

     

    Llove and light

    Shelley

  • Stephaniee
    Stephaniee Member Posts: 2
    edited October 2016 #17
    So sorry you had to joined

    So sorry you had to joined this group but we are all here to help and support each other. I have struggled with what to tell people about anal cancer, but in this situation we should always share this with our family and friends because they are our support system. One of my friend had suggested me to start using Hemp oil in my daily meal. It is powerhouse of nutrition when it comes to healthy fats and its totally natural. It helped me a lot after my surgery to recover fast. After that I have started using hemp oil in my salad and juices too, it tastes quite nutty and crispy. It keeps you very healthy and active. I found Charlotte’s web hemp oil effective for myself and I suggest you to give it a try with reputed brands. Make sure they have complete control over their growing and manufacturing process so the product is the same each time. 

    Please keep asking things to us and we will be more than grateful to share our experiences with you. God bless you!

  • mp327
    mp327 Member Posts: 4,440 Member
    edited October 2016 #18
    clouse said:

    Csalek

    Csalek

    I am also newly diagnosed. The waiting can be a ****. 4 wks out of hospital (colostomy bag hooked up). Having chemo pump attached tomorrow. Had to wait almost a month in 2004 (breast cancer) because of hurricane Ivan. (Breast cancer free 12 yrs). Anal cancer not related. Hang in there. I just work it one day at a time. Let me know how your doing. It seems we will be close together treatment wise.

     

    Llove and light

    Shelley

    clouse

    I am sorry you have been diagnosed with this disease.  I hope you will find this site helpful and supportive.  Please let us know how we can help you and know that I wish you all the best.

    Martha

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