Newly diagnosed

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.

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 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?

 

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

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.

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

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!