I don't have a bottom but I have symptoms

[NicolaEvans]

Hi everyone, Im new and feeling pretty alone in my world of having had my anus & rectum removed, 6 rounds of strong chemo followed by full pelvic radiotherapy finishing with 5 more doses but of higher dose in 4 specific areas. I will know how effective it has been for the cancer in 2 days time with my PET scan results but in the meantime whilst I feel alone due to my rarity I would love some help to see if im not alone with the certain pains i'm having after pelvic radiation.

Pain in legs when sleeping.

Not feeling like I have completely finished urinating and having to wear small daily pads for urine to leak afterwards.

Change of bowel habits

Groin pain. Feels like maybe where my ovaries maybe but comes later in afternoon?

Tiredness ( I haven't thought that my tiredness could come from pelvic radiation)

Hope this is not too long a first message, but thanking you all in advance!

Nic x

ps i thought i would use this pic as only pic i could attach from my laptop (very out of date but it is me and my loving family)

[HarleyQuinn82 Community Pioneer]

Hi Nic, Beautiful photo!

I’m so sorry you’ve been through so much! All of the symptoms you are experiencing could well be related to pelvic radiation including the fatigue although chemo can do that too.

I will keep my fingers crossed for a good result 🤞🤞🤞

Have you spoken to your team about your symptoms? Are you taking any medication to help? xxx

[NicolaEvans in reply to HarleyQuinn82]

Hi, thanks for responding to my first post. My PET results in which i was waiting on before going to my team and sharing my symptoms in fear i suppose they were cancer growing / spreading . My PET results were really good no spread and only a small 2cm cist to sort which i feel hopeful about but also appreciate the cancer i was diagnosed with does not show like most cancers and it is really sneaky. So i always need to be on alert which i need to get my head around mentally. The scan also showed my kidneys whilst are working are showing fullness of the collecting systems of both kidneys and both proximal and mid ureters without any obvious explanation. So next check is my renal functions and reassess the renal tracts. Im hoping this can be easily fixed and I know it sounds strange but the pain in my shoulders and back ribs is now explained by my kidneys and I am praying it will be something we can work on. Thanks again for messaging x

[Greeny85 in reply to NicolaEvans]

Hi NicIf they have mentioned your kidneys are full this could also be related to the pain in legs at night and tiredness. I had filling of both my kidneys after pelvic radiation as my ureters had developed strictures and when my kidney function is dipping or I get a infection I normally have fatigue and cramps in my legs which are worse at night. Hopefully they will refer you to a urologist who can advise you x

[Cruiseaholic]

Sorry to hear of your suffering. I have just finished a 6 week course of chemotherapy/radiotherapy for rectal cancer. Whilst my case is not as extreme as yours I too am experiencing similar problems. The bladder problems are entirely consistent, so I am told by my oncology team, with the radiotherapy and should improve over time. The tiredness is also consistent with both chemo and radiotherapy. I’m not sure how much radiotherapy you have been given but in my case it was 54 Grays. If you compare that with a chest X-ray which is around 0.007 Grays that’s around 8,500 times more powerful. That’s a lot of energy directed at one spot. As I understand it, the body is now fighting to repair itself both from the chemo which has suppressed the DNA and the radiotherapy which has destroyed the cancerous cells. It is thereby using up a great deal of energy to do that, leading to the fatigue. In my case it has given me terrible tenesmus which will hopefully improve over the next four to five weeks. I hope your symptoms improve too, I’m sure they will.

[NicolaEvans in reply to Cruiseaholic]

Aww wow thank you for sharing we really don't realise how much it effects us and I'm so pleased I've found this support network. I too had 54 grays of full pelvic for 5 weeks and a further 9grays for 5 more rounds in just 4 more targeted areas that showed up more metabolic activity.

I really didn't realise to be truthful but I knew it was my best option especially now having had my results it did the job for now. I will now listen to my body more especially with the fatigue etc , so thank you so much for educating me and also reminding me. I hope your symptoms improve too. Best wishes

[Larsonist]

Hi Nicola. I had my rectum removed but kept the anus, so I would imagine my problems were less serious. In fact for about a year after my operation (I had all my chemo and RT before the operation, for various reasons) I had a lot of pain, leakage, tiredness etc. It got better but it took a lot longer than I was expecting, and that was hard because I wasn't expecting it to be such a long haul after 18 months of treatment. Anyway, things did get better with long term work on muscle control and improvements in diet, getting to know my new body and what it would take and what would set it off. I have a really good quality of life now although long walks and standing around in pubs are asking for trouble!

[NicolaEvans in reply to Larsonist]

Aww wow this gives me so much hope. Thank you. I need to be patient now and know there is a life out there where exactly like you say I can stand and have a conversation which at present standing to have a chat my body is just screaming "Sit down, sit down". Thank you again, i am so grateful to have found this support network.

[Larsonist in reply to NicolaEvans]

Glad it was helpful. Just to give a little more perspective, I had a lot of pain and massive tiredness for at least 6 months after my temp iliostomy was removed. I didn't get full fitness for sport back for another 3 years, but got there in the end. Even now, 9 years after my radiotherapy I get the occasional spell of fatigue. On the up side, as my health recovered it made me realise how fragile life is and that we need to make the most of it, so I have put a lot of effort into spending time with family and friends, and having amazing adventures!

[SpaghettiBetty]

Hi NicolaEvans

I’m so sorry you’re experiencing these symptoms. Do you mind me asking how long it was since your treatment? If it’s less than 6 months it may well be short term side effects which hopefully will resolve.

As far as I am aware, symptoms are deemed ‘late effects’ or ‘long term side effects’ if they occur more than 6 months following radiotherapy. Definitely mention all of these symptoms to your oncologist/healthcare team.

Although I had cervical cancer, I have a permanent colostomy and urostomy (I still have my rectum/anus) but I can appreciate it is a big adjustment to make.

My bowel can behave differently even though I don’t ‘go’ in the conventional way so it can be tricky to get advice from other ostomates (I’m assuming you have an ostomy) so you’re more than welcome to ask me if there’s anything I can help with.

Cancer Related Fatigue can last months and sometimes years but it’s hard to tell who will get it and for how long. Just listen to your body, trying to do everything you used to go can be so exhausting.

What a lovely picture of you and your family 🥰

Sending you a virtual hug x

[NicolaEvans in reply to SpaghettiBetty]

Hi SpaghettiBetty (I love your name), thank you so so much for responding to me and for your help. I don't have an ostomy I have a permanent colostomy and have the greatest respect for those with a urostomy also. Im so pleased to connect with you. Best Wishes

[Mariecapp]

Hello. Sorry you are experiencing all these symptoms. I can identify with all of them. I am an anal cancer survivor, it will be 4 yrs ago on 10/11/20 that I was diagnosed. That was followed by chemo and radiation treatment. So far I'm ok, but I have a bad protein in my blood and if it activates I will have leukemia. Every 6 mos I get a whole battery of bloodwork. Hang in there, you are not alone!

[NicolaEvans in reply to Mariecapp]

Thank you so so much Marie for sharing! It gives me great hope and I am super grateful

[accidentalcarnivore in reply to Mariecapp]

Hi, you mentioned a bad protein in your blood that your docs are watching every 6 mos. I have this also. About a year after my treatment for CC, i was diagnosed with myelodysplastic syndrome, which is bone marrow insufficiency. About a year after that, it appeared to resolve itself, but i am warned it can return at any time after pelvic radiation. This protein they are watching is an early indicator of this sydrome which can develop into leukemia. i do experience more fatigue than i think is warranted for my activity level. But i also have an extreme diet (carnivore) to avoid small bowel obstructions and SIBO so i don't know if that has anything to do with it. good to meet someone else with this blood protein problem.

[Mariecapp in reply to accidentalcarnivore]

Wow! You are the first person that I know of that has the same problem! Please keep in touch!