Westie1981 (copied and started a new thread)

eihtak
eihtak Member Posts: 1,473 Member
edited December 2016 in Anal Cancer #1

Hi, I saw you had posted this in an old thread so thought it may get more response if started a new one. Often the older posts are still VERY useful so wise to read through them (check dates in upper corner) but they don't always get as much response. 

I am so sorry for your situation, it sounds quite frustrating to say the least! Yes, seven weeks is an unreasonably long time for biopsy results. If at all possible try to seek the advice from a medical team (doctor, clinic, etc. that you trust) If you can, search for a colo-rectal doctor, oncologist, surgeon, rather than a general practitioner. Keep in mind that you are the boss...your doctors work FOR you and you have every right to hire the best employees available to you. I am very confident in my oncologist and surgeon and know that this whole ordeal would have been much more difficult without that. (I was initially dx with Stage 3b anal cancer in 2011) Unfortunately, that is not always the way it works for some, but I will hope you are able to get lined up with responsible care from a provider that you trust.

To your concerns on radiation to that area....yes, it is painful, but, it is also doable. Everyone reacts differently and some have more discomfort than others. The usual course of treatment combines chemotherapy and radiation and is rather short in comparison to many other cancers. Although the side effects are worse for some than others the course of treatment is usually 6weeks.

Please continue to post as you move forward as this site has been a Godsend and wealth of information for myself and others. I will have you in my thoughts and prayers as you progress.

katheryn

 

Posts: 1
Joined: Dec 2016

Dec 14, 2016 - 6:16 pm


New



Hi there I am very new to this site and newly diagnosed with anal cancer just 2 weeks ago.  I have Crohn's disease which I have been treated for with an immunosuppressent just 8 months or so ago.  I had a routine colonoscopy and asked the surgeon to pleeaaase take off the hemorroids as they are excruciating.  He just said no it would have to be by general anaesthetic.  This was done within weeks.  It was really sore and the sutures came out unintentionally, so it was an open wound, it became infected, no follow up was needed I was told when discharged. 7 weeks went by and I had a telephone call from the hospital with an appointment to see an oncologist!  2 very intense days were spent trying to get answers from my doctor, the hospital etc.  It turns out I have squamous cell carcenoma and thought he sample was clear on one side the other side was in doubt so it means going through surgery again and removing the Crohn's portion of my bowel too.

I am feeling very let down by the doctor who removed the lump.  How long does a biopsy take to test? Is it normal to take 7 weeks?  I'm not sure what further treatment is needed but the thought of radiotherapy 'there' horrifies me.  Are there any alternatives?

My gp's have treated me for hemorroids for at least 12 months without even examining me, this can't be right can it? I've moaned about them enough and the fact the creams did nothing. They have also said the immunosuppressents could have caused this cancer. I'm so confused by all this and feel very let down by the medical professionals I have seen.





Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Westie 1981



    I copied and pasted the response below from the other thread.

    I became angry as I read your post and learned how long it took for you to get your biopsy results.  This is SO not right.  I was diagnosed in 2008 and my doctor had my biopsy results within a few days.  I am so sorry that your journey has gotten off to such a bad start.  I hope that things will go better from here on out and that the other doctors who will be involved in your treatment have experience in treating anal cancer. 

    I can understand your fear about radiation, as it can be a tough road for some people.  However, the course of treatment is relatively short, as compared to treatment for other types of cancers.  Typically, it will be 5-6 weeks at most, and there are lots of things that can be done to relieve some of the bad side effects.  You are already hooked up with all of us here and I can tell you the advice from those who have been through this already can be invaluable.  There are many here who will be forthcoming with tips and advice to help you get through this.  All you need to do is ask.

    So that you are well-informed about what lies ahead regarding treatment, I urge you to get on the website for the National Comprehensive Cancer Network at www.nccn.org.  You will need to do a quick registration first, but then you'll have access to the latest guidelines for the treatment of anal cancer, along with a lot of other good information.  Education is key when talking to your doctors about treatment.

    As for alternative treatments, there are none that I am aware of.  This treatment (chemo/radiation) has a high rate of success.  It will not be a fun few weeks, but getting the most successful treatment is what will rid you of cancer.  I wish you all the very best and hope that you'll keep us updated as you move towards getting a treatment date and plan.  You can do this!  Take care.

    Martha




  • malkin
    malkin Member Posts: 7
    mp327 said:

    Westie 1981




    I copied and pasted the response below from the other thread.

    I became angry as I read your post and learned how long it took for you to get your biopsy results.  This is SO not right.  I was diagnosed in 2008 and my doctor had my biopsy results within a few days.  I am so sorry that your journey has gotten off to such a bad start.  I hope that things will go better from here on out and that the other doctors who will be involved in your treatment have experience in treating anal cancer. 

    I can understand your fear about radiation, as it can be a tough road for some people.  However, the course of treatment is relatively short, as compared to treatment for other types of cancers.  Typically, it will be 5-6 weeks at most, and there are lots of things that can be done to relieve some of the bad side effects.  You are already hooked up with all of us here and I can tell you the advice from those who have been through this already can be invaluable.  There are many here who will be forthcoming with tips and advice to help you get through this.  All you need to do is ask.

    So that you are well-informed about what lies ahead regarding treatment, I urge you to get on the website for the National Comprehensive Cancer Network at www.nccn.org.  You will need to do a quick registration first, but then you'll have access to the latest guidelines for the treatment of anal cancer, along with a lot of other good information.  Education is key when talking to your doctors about treatment.

    As for alternative treatments, there are none that I am aware of.  This treatment (chemo/radiation) has a high rate of success.  It will not be a fun few weeks, but getting the most successful treatment is what will rid you of cancer.  I wish you all the very best and hope that you'll keep us updated as you move towards getting a treatment date and plan.  You can do this!  Take care.

    Martha




    Westie 1981

    If your cancer is localized in the anal canel, then Nigro protocol (4 days each of chemo in the beginning and the end plus radiation in between for three weeks) has an almost 100% success rate in getting rid of the anal cancer provided the tumor is not very large (no more than 5-6 cm).  This is one of the few true success stories in cancer treatment where REAL cure is possible.  This is a very standard protocol that all oncologists know about, and is not a serious procedure. You should not wait.   The real problem is if the cancer has spread at all.  Then the situation becomes very uncertain-- my very first diagnosis out of the blue was anal cancer metastatic to the liver in spite of me being asymptotic and excellent health (outside).

     

    I would insist that your oncologist does a careful staging with CT contrast and PET scans to ensure that your cancer has remained local.  If it is completely localized, you have little to worry, just go for the Nigro protocol  You will be cancer-free in six weeks!