New to the Community- It's Been a Whirlwind But Finally Starting Treatment Mon. 7/28

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I am so thankful & blessed to have found this community and that you allow us from across the pond! Any place I looked at on this side was only horror stories (purely negative) and only during treatment. I did not see ones where people were responding to others that had been thru it that had months or years after treatment under their belt. This community is so truthful, helpful, uplifting & encouraging!!

For me, I have to thank my wonkey head for my diagnosis. I do not have symptoms from my anal cancer. I have had what I call a wonkey head since July/Aug 2024. Dizziness/foggy headed maybe best describes it. I feel really off in my head with everyday at some point feeling like I am going to fall forward or backwards with a few really bad episodes. Anyhow, my doctor ordered blood work among a bunch of other tests. My iron came back on the low end, 13 with the low of 11. I have had a history of bleeding hemorrhoids and stomach ulcers so she had me follow up with my gastro guy - took 4 months to get that appointment. Of course the word blood leads to a colonoscopy, took another month to get it. Well, they found an area that did not look right, close to bumpy looking skin & biopsied it. It came back not good and lead to a CT scan and an unhappy groin lymph node, then a biopsy of it.

So here I am. Learning...

Learning patience, with all the doctors appointments (18 in 3 weeks) and waiting to hear back; waiting to hear the start of treatment date -medical oncologist's first goal was to start 7/7, radiation oncologist said that was too soon for them 7/14 would be the earliest because it takes them time to do the radiation plan. Which is OK because I want them to pin point that beam as much as possible. That got completed finally so I start Mon. 7/28.

Learning about treatments- my medical oncologist specializes in anal cancer. It's rare, only about 10,000 people in US will be diagnosed with it this year and most of them are women in their 60's. But it is highly curable and the treatment that is highly effective is the same one they have been doing since the 70's, 5-1/2 to 6 weeks of radiation with week 1 and week 4 including chemo.

Learning about side effects. The dr's have told me about them however, I think I have learned more from the people on here as to what they really went thru. I so appreciate what everyone posts about this side of life. And not just the effects during treatment but afterwards as well! My dr. said that recovery will be 1 week for every week of treatment and that I will feel a lot worse before I get better. Thank you all for giving me insight as to what that may look like! 

Oh yeah, she also said this has nothing to do with my wonkey head. Neurologist thinks it is spine/nerve related. But if I would not have had it, it would be another 5 years before I had a colonoscopy.

Thank you all for being you!

Crissy

  • Glad you finally have a start date and that you got your diagnosis before things could have become worse! It took two years for my diagnosis. Like many others, my symptoms were put down to hemorrhoids and it wasn't until a colonoscopy that they found it to be anal cancer...

    Things probably feel a bit surreal and overwhelming right now, but you will get through this. Everyone responds differently to treatment and side effects vary greatly from person to person, but you can ask anything here and there will undoubtedly be someone with experience to share and advice to offer.

    Best of luck to you going forward,

    Jenna xx

  • Hello Crissy,

    It certainly sounds like your medical team were very thorough, and although it’s absolutely not a diagnosis you want to hear, it’s good that it has been detected before getting symptomatic. 

    You must be reeling from all the endless appointments and scans and hopefully it will be a relief to finally get started on the treatment on Monday. I hope that your work has been supportive as you will need time off for recovery. 
    As others have said, the side effects from the treatment build gradually and your team should support you with the creams and medications to manage. 

    The treatment has a really good success rate. My 6 month scan showed no evidence of cancer. 

    I hope that you can get help and clear diagnosis for the head symptoms. Sounds really unpleasant but also also quite something that it’s led to your ac diagnosis.  Lots of us on this forum had a very long journey to diagnosis as so many doctors have never come across anal cancer. 

    Wishing you all the best for Monday xx

  • Hello Crissy

    I am so sorry that you are on this road, but a warm welcome to this forum; you are amongst those who really do know what it is like.  Those first few weeks are mind-blowing - I couldn't even answer the phone such was my fear and it was appointment after appointment and my dread of all these scans and investigations went through the roof.

    You really will feel better and hopeful once treatment starts and your team sound very thorough.  My first oncologist also specialised in anal cancer and led studies world-wide and I thought at the time, if anyone gets me through this she will.  And everything she said came to pass, in exactly the order she outlined at me very first appointment.  So you already know that the treatment has a very high success rate and bear in mind many go back to much as they were before.  I didn't but it is nothing I can't live with and I am totally ok with that, it is better than the alternative.

    We will all be rooting for you on Monday, please let us know how you get on and we will are always here to support should you need it.

    Big hug

    Irene xx

      

  • Hi from one Chrissie to another !!!

    im 13 months post treatment for stage 2 anal cancer with retrorectal cysts …

    The advice from others on this site is priceless as we have all been where you are now .. I came through the treatment without painkillers but late effects came in around 4 months and continue today .. I now have a new normal but still seeking answers .. you will come through this … 

    take care 

    Chrissie xx

  • Wishing you all the best for Monday Crissy.

    Ally xx

  • Hi Crissy ( ),

    Firstly welcome to the MacMillan Online Community although I’m so sorry to learn of your recent diagnosis. I’m also pleased you’ve found the posts here beneficial & informative. Me personally I’m a little over 7 years post treatment & enjoying life. 

    It’s really good that the investigations for your ‘wonky head’ found this anal cancer before you began experiencing any symptoms, this has obviously lead to a much earlier diagnosis. Anal cancer is so often misdiagnosed for months leading to later diagnosis & therefore higher levels of radiation needed & sometimes radical surgery to achieve cure. 

    I'm really pleased you’ve a start date, not long to wait now, most people find it passes really quickly once you’re in the routine of daily hospital visits. 

    Remember we’re here to support you however we can do please ask if you’ve any questions you think we may be able to help with. 

    Nicola 

  • Hi Crissy ( 

    Welcome to the forum. Everyone here will be there for you however you need. Sounds like it was a good job you had a wonkey head. Good luck for the 28th. Sending hugs. Xx

  • I so appreciate all of you & your responses! This is exactly why I am so grateful I found this site!I am not sure if you all realize how impactful what you do is.

    I know every body has different experiences with side effects. But am confident in no matter what I go thru, there will be someone here to give me insight on how they handled it. My team has already told me multiple times to call them no matter what or when. So I really feel I am covered since I do not know anyone personally who has gone thru this.

    Big Hugs to you all (and that is a big one as it has to go across an ocean)!!

    Crissy

  • Thank you Jenna!

    I am sorry it took you so long to get a diagnosis. I have had internal bleeding hemorrhoids for sheesh, probably close to 15 years now. Had 3 colonoscopies because of them. But that was the only thing they found with them when I had them. I will say a difference for me in the last 6-8 months is now I have an external one as well. No pain or itching, it just kind of hangs out there. But in the back of my mind I wonder if this may be my one symptom? My dr. said no and did also tell me that this treatment will not take care of them either. That will be another time.

    Hugs & luck to you too going forward.

    Crissy

  • PEB24 that is great to hear that you are 6 months cancer free!! That had to have been a big sigh of relief!

    Very thankful for my wonky head and my primary dr. for checking my iron. I am sure she was not expecting the results I got!

    I can say I have heard more on here about how the side effects build gradually than from my drs. They mostly go over, 'here is what you may get'. The only 2 they have talked about being gradual is the fatigue and diarrhea. And I think that may be because they seem like they could be the most common ones. 

    Thanks for all the wishes and wishing you well as well.