Hello, recently diagnosed T2, starting treatment soon

1. Hi Loobylou178, welcome to the group. You will find members really great in giving tips on what helped them through treatment and the healing process. My diagnosis five years ago was the same as your but was given 5.5 weeks treatment of chemotherapy infusions the first day followed by tablets morning and evening when receiving the radiotherapy treatment which was Monday to Friday and we had the weekends off. I can only tell you my experiences as many of us are affected differently and side effects from treatment varies person to person. My very first appointment with my oncologist sat me down and proceeded to tell me all the possible side effects which left me pretty frightened. But I came on here and one of our lovely members reassured me that if/what side effects you possibly get will be cumulative. Many of them I didn’t get. 
   
   
2. I used a gel called StrataXRT during treatment that was trialled at Leeds hospital on cancer patients going through radiotherapy which turned out to be a success for keeping skin intact. They didn’t continue due to the expense. I bought a large tube online which took me from the very first day to the end and the healing weeks beyond. Some members on hear used various creams given to them via their treating teams. Addenbrookes I found were hesitant in giving me creams at the start and preferred to wait until you needed them. For me around the fourth week my skin externally was great but I did get inflamed internally. The sitz bath is the best buy I bought from Amazon which is so useful for cleansing sore skin and even using it whilst you go to the toilet as it sometimes helps the pain. I purchased some soft cotton shorts style knickers and some harem trousers to help keep comfortable. I did pelvic stretches three times a day to keep supple and strong and was told yesterday by a colorectal consultant I had a really good pelvic floor for a 71 year old! You become better at finding ways to make things more manageable and this treatment is harsh but effective. I won’t bombard you with much more as others will come here and share their coping strategies. Good luck

Julie

Hi Loobylou178 , a warm welcome from me to the MacMillan Online Community although I’m so sorry to learn of your recent diagnosis. I think we can all appreciate the feelings of shock you’re experiencing. 

My own journey began similarly to your own although I was referred straight away by my GP to the lower colon team at my local hospital, they said they were going to remove an external polyp & repair an internal ulcer along with performing a flexible sigmoidoscopy. When I went into hospital for the procedure I came out of the anaesthetic to be told they’d taken a biopsy instead, I began to prepare myself for the worst & 7 days later I had my diagnosis. I was diagnosed T1N0M0. 

My tumour was surgically removed via local resection where a clear margin of 4mm was achieved on all except a tiny portion where there was only a 1mm clearance, this was cut off for further treatment. I was offered into a clinical trial where I had chemoradiotherapy for 23 days. 

Like you I was terrified before my treatment began, I’d read lots of accounts about the dreadful side effects. I had almost no side effects from the chemo side of things, I had a short infusion of mitomycin on day 1 prior to my first radiotherapy session, a couple of days after this I had a couple of mouth ulcers pop up & felt ever so slightly nauseous but this lasted 24 hours & then I was fine, each day of radiotherapy thereafter I took oral capecitabine twice daily. I had a good appetite throughout. Radiotherapy was a painless 10 minutes laying on the bed with the machine moving around me & then it was done. Treatment was Monday-Friday with weekends off all treatments. I had a touch of radiation cystitis at the end of week 2 but was towards the end of week 3 before my skin began reacting. I didn’t get really sore until my treatment was over, but when healing began a couple of weeks after I healed really quickly. I didn’t suffer any diarrhoea in fact I had to take stool softeners throughout as I swung completely the other way! I did suffer with a lot of fatigue but an afternoon nap & early nights helped with that. 

The best advice I can give is take it one day at a time, let your radiotherapy team &/or your oncologist know about any side effects you begin experiencing, there’s a multitude of creams & medications that they can prescribe. 

I’m currently 8 years post treatment & as far as I’m aware I’m cancer free. 

We’re here to help support you however we can.

Nicola 

Hello Loobylou178 

Another welcome from me, although I am really sorry that you have to find yourself here at all.  You have already had all the pre-treatment investigations so shouldn't have too long to wait and personally I felt a huge sense of relief when treatment in earnest finally started.

We all have different experiences during treatment.  I had really severe side effects BUT my treating team were on the ball, all the time, with painkillers, dressings and creams.  I honestly cannot fault them in any way, they made that period bearable in that if something didn't work to help, they gave everything else that they could.  But, and this is important, I know that my experience isn't typical.  And I am back here to tell the tale, I have a new normal (I think most of us have to some degree) but life is wonderful.

You have come to the right place for advice and coping strategies during treatment so if you haven't read other posts, please shout out, you will get a deluge of what worked for each of us!  The most important item for me was a Sitzbath, a plastic bidet which can be bought on Amazon and it is wonderful for soothing the whole region during treatment.  I even used it as a loo during treatment, having a bowel movement submerged in lukewarm water was somehow less painful when the whole area is tender towards the end of treatment.

Please let us know how you are and we are here to support in any way we can.

Big hug

Irene xx

Hi Julie,

Thank you for this, this is really encouraging.

My hospital appear to be the same in that any creams etc will be given when you need them rather than as any preventative measure.

I will look into a sitz bath and appreciate all your tips! Thank you!

Emily x

Hi Nicola,

Thank you for this. I am really glad to have come across this group which has been so helpful and supportive already. I really appreciate your advice.

I'm glad to hear you are doing so well post treatment.

Emily x

Thank you Irene. Sorry to hear you had severe side effects, but I'm glad to hear your treating team were supportive throughout. 

The sitz bath sounds like a must, I will look into that! I really appreciate everyone's advice and support. 

I am glad that you have found your new normal and enjoying life, that is lovely to hear!

Emily x