Anal Cancer Newbie

[Heidsta]

Hi folks,

At 46yo I was diagnosed with T4 anal cancer back in September 2019, finished the 6wks of  chemo radiotherapy in December, & am now dealing with the physical fallout so thought it might be a good time to connect with some of you folks who understand. I've been incredibly blessed with an amazing husband & two gorgeous, caring young men (15 & 12yo) for our sons, so have beautiful support at home, but no-one quite understands like those who've already walked this path. Am not quite sure at this point that I have any expectations from joining this community, but I thought it may just be helpful to connect with others, & if I'm able to help anyone along the way too, then this whole journey will be all the more worthwhile. Thanks for being here! Heids 🙂

[Katekat]

Hi there @Heidsta and welcome to our community!

I am glad you've got a good support system at home, as that is very important. But you're right, people who have been there or are going through the same thing as you is different.

So welcome!! 🙂

-Kate

[sch]

Hi Heids,

Sorry to hear about your diagnosis.

How are you? How is your family coping?

Do you have much treatment left or all complete?

-s

[Heidsta]

Thanks SO much S for replying - it's lovely of you to take the time to message me. And thank you for your empathy. Are you also a cancer sufferer, or have been?

I am doing very well thank you. My treatment of 6wks radiotherapy with a 96hr chemo pump in weeks 1 & 5 finished on December 13th. I don't know if you're familiar with pelvic radiotherapy, but my beautiful nurses revealed to me at the end of my treatment that it's basically the worst radiotherapy a woman can endure - it's pretty horrendous, & I really struggled physically through the two weeks post treatment. I'm still doing two small dressings on a few stubborn spots, but the majority of my skin has healed very well, thankfully. Internally is another story... still very red & swollen, & I don't have great bowel control yet, if I ever will?! & trying to reintroduce certain foods seems to be proving very slow going with regular 'upsets'! But mentally I'm very strong & at complete peace with it all.

My hubby & sons have been truly amazing & an incredible support. They are also very strong & extremely encouraging & caring. The whole process has certainly made us count our blessings & be thankful for every day. Besides the first week of treatment we stayed in accommodation on the hospital campus for the rest, & it was a beautiful opportunity to connect with others going through various cancer treatments as well as hospital procedures, etc. We shed tears, laughed & hugged people we may never see again, some of whom lost everything in the bushfires & then we're facing serious procedures. So it may sound a little odd, but we are all hugely thankful for our journey so far, & thankful for the opportunities it's brought to be able to help others in ways that otherwise would not have been possible.

So now we await a PET scan some time in April, then a biopsy in June to determine whether any surgery is required. 

Thanks again for your concern,

Heids

🙂

What is your journey S???

[Heidsta]

Thanks SO much for your warm welcome Kate - it's greatly appreciated, bless you!

Cheers,

Heids

🙂

[sch]

Hi Heids,

It's great to hear that you've had good support from your family. That makes such a difference.

Not everyone is so lucky, so it's great to hear that you have.

Yes, when you stay in hospital with critically ill people, you really learn just how luck you really are.

I'm glad to hear that you've finished radiotherapy. I haven't had it before, but from all reports, it's not very nice.

Are you from a rural area too? I hope your house is OK.

My story? I have genetic predisposition to bowel cancer (lynch syndrome) and in late 2017 I was diagnosed with bowel cancer. I had an operation for a total colectomy and 6 months of chemo (FOLFOX).

Lots of monitoring to continue on, but so far cancer free!

Good luck with the PET scan and biopsy!

Let me know if you have any questions.

-s

[Heidsta]

Yes, I am extremely thankful for my beautiful family & recognise how blessed I am to have such great support from them. A few people we came across during treatment were not so fortunate & got treated really quite badly by their dismissive partners, so again it causes you to take stock.

We're from the NSW north coast & spend most of our year housesitting in this region as well as south east QLD. We have a little shack at the beach which is our base when we're not out & about. One of he earliest fires in the season at Shark Creek came within a few kms of our little town, but the fires stayed north of us thankfully. Where abouts are you located?

Wow S! What a huge journey for you. It's wonderful to hear you are cancer free so far - congrats! 🙂 My colorectal surgeon who I had my initial colonoscopy through has warned us that if my treatment does not clear all the cancer then I will need a resection resulting in a colostomy bag. They initially detected my cancer literally just inside the anus, but there was also a lemon sized growth pushing against the colon & vaginal wall. I can't feel that discomfort anymore which is wonderful, so we're hoping & praying the treatment has been successful. But even if I do end up having to have the surgery, I'll be thankful just to be alive! I have a lovely friend who is a clinic nurse & she said I need not fear having a bag if necessary as they've come such a long way with them, & many people have them but you'd never know. I hope you don't mind me asking, but how are coping with it all S? Was it a difficult transition for you, or relieving to have alleviated a lot of your risk?

Thanks SO much for chatting - I really appreciate it.

Heids

🙂

[sch]

Hi Heids,

That sounds like a nice little place. Glad to hear that you escaped the fires. Nasty business that.

I'm in Sydney, but I've lived in a number of places including various places throughout Victoria.

As far as coping with the change, it hasn't been so bad. I've had to adjust my diet a bit, as some foods just go straight through me. I had to try and workout what foods I could tolerate and which foods I couldn't.

How long they were going to take to digest and of course, I need to go to the toilet more often.

So now with different foods taking shorter lengths of time to travel through and needing to go to the toilet more often, if I'm going to be away from a toilet for an extended period of time, I need to plan accordingly. Sounds similar to what you are going through at the moment?

But generally, other than needing to go to the toilet more often, there hasn't been too much change, just being conscious of what I eat. I'm still getting tired a lot easier and I need more sleep. That's proving difficult, but otherwise, life goes on.

And yes, very happy with the lowering in risk.

How is your family going?

-s

[Colin81]

Hi Hiedsta,

I read your posts (and Sch's) with interest, a lot of it resonated with me, there is a level of camaraderie with those people you meet with along the way, especially in the cancer wards. I always thought I was ill until I met all these other people who seem to be worse off than me, yes I was ill but they for the most part went stoically forward no matter what confronted them. I am pleased that you have taken the time to join our community, you will find an enormous amount of experience from people who have/are dealing with or been a part of through their friends and/or family. There is nothing like hearing first hand how to get through and deal with this insidious disease that affects so many people. Many of the stories are awe inspiring and assist you in dealing with all the issues that you will be confronted with. Right now you seem to be in a great place (mentally and physically), I can't emphasis strongly enough the support of family and friends is in going through this.

I had my first brush with anal-rectal cancer (Non-Hodgkin Lymphoma) a number of years ago, like you six doses of chemo (individually intravenous) but no radiation at that time, left me pretty devastated and I was unable to work for 2.5 years. Did not want a colostomy bag at the time but was warned that it may occur, fortunately it did not. Many years of partial sigmoid's and colonoscopy's together with seemingly never ending biopsies. 

Times are changing and the treatment regime and medications have improved enormously over the years and a positive outlook is imperative no matter the diagnosis. I hope your PET scans are all okay. Hospitals and Covid19 is a problem at the moment, hope it may have eased off in the next few weeks for you to have your scans.

Fortunately we live fairly remotely north west of Sydney, no neighbors, no contact with anyone generally speaking. My GP has banned me from going anywhere and now I do my  GP & Specialists consultations by phone. Life's not that bad after all.

[HeyJude]

Hi, my story is similar to yours (and my age) and Hi, I was wondering how you are going now? I’d like to get an idea of what I might expect over the next few weeks and months. I completed the 30 day chemo radiation treatment on Friday and am now back home with my family - husband  and 8 year old daughters living at home and adult son and stepdaughter  in the district. Lots of community support but I don’t know anybody who has had anal cancer that I can talk to. Did your side effects increase post-treatment? Have your skin and bowel movements gone back to normal? What scans/investigations  did you have and how long post treatment? Any information appreciated