Newly diagnosed

Hi ,

Firstly I’d like to welcome you to the online community & our group although I’m sorry you find yourself here.

It’s great to hear that you went to the Drs as soon as you noticed something wasn’t right & great that your nurse & Dr were both so on the ball as so many anal cancers are misdiagnosed as haemorrhoids etc., which often leads to later staging. Like you I had a brilliant GP that referred me straight away to my local hospital & the lower colon team where it was suspected I had an external polyp & internal ulcer, I went in expecting a repair but my consultant saw something he didn’t like the look of & I was biopsied instead & 7 days later I was told it was cancer, from diagnosis to end of treatment was approximately 16-18 weeks give or take, this would have been quicker again but I had surgery to remove my tumour & 8 weeks healing from that before embarking on chemoradiotherapy. It’s also good news that they’re removing the polyps for you too.

The waiting really is the difficult part in all this, I remember feeling the same way just eager to get through the other side. 

Please if you have any questions at all don’t be afraid to ask however personal they may seem I can guarantee they’ve been asked before & we’re a very open, honest & helpful group here. 

Nicola 

Hi and welcome.  32 polyps, that must be some sort of record! Its a good job that these were picked up now as they could have caused problems for you further down the line.   Just one tip for now is that  I found it helpful to make a note  of things I wanted to ask before my appointments. There's so much to take in it's easy to forget the things you wanted to ask.  I don't know if the hospital will allow you to take someone with you to your appointments  (you could telephone to ask),but it does help to have someone else there to remember what has been said and pick up on anything you may have missed.  Hope all goes well and please come back with any other queries or questions you may have.  Bev  

Hi, Thank you for being so welcoming and your replies and advice. I've read a couple of your other replies on posts and you are both amazing, knowledgeable, patient and supportive. I did call the hospital and was able to take my hubbie with me today who was great apart making a joke about me standing in front of the fridge at 8.30 in the morning when I was asked if I drank. Honestly I cant take him anywhere lol. I do think I've been lucky that the lump was removed back in December so there shouldn't be any delays starting treatment. I've had the blood test today to check for the DPD deficiency and all being well should start treatment soon. From what I've read on here my treatment plan looks fairly standard, chemo and radiotherapy alongside one another the first chemo being IV. They seem to think treatment will start in about 2-3 weeks. The polyps have all come back fine so thats a huge relief and they are going to delay the rest of them being removed until after my treatment. Im still feeling super positive but it someways it still doesn't feel real and very surreal. Thanks again for your replies x

Hi thanks very much for your reply.  I like your husband's sense of humour, it's always good to try and have a joke during difficult times.  All the best Bev x

Thank you  & you’re more than welcome, I got huge support from this group when I received my diagnosis & throughout my surgery & treatment so this is my way of paying a little forward. It’s great that your hubby was able to attend your appointment & that he has a good sense of humour, I do also & had some wicked laughs with my radiotherapy team & oncologist during my daily treatment visits, I think it’s what got me through. Great news about the results of the polyps, that’s one less thing to worry about! I totally understand about the surreal feelings surrounding the whole experience, I think that’s partly because things move fairly quickly in the beginning & you’ve had the added intervention to remove the polyps too. 

Nicola 

Well I had a call yesterday booking me in for my planning CT scan. Its for this Tuesday. I am so impressed with how quickly my Hospital are with things. Everyone of the staff have been so supportive and calls to book things in have literally been the next day after I've been seen. Ongolgy have thier planning meetings on a Tuesday so not sure if the DPD blood results will be back in time for my case to be discussed this week but I know im in good hands so not worried. I also feel lucky as the target date for the biopsy/ investigation under general anesthestic was today so I'm already well ahead on time scales. 

After my lump was removed I was left with quite a sore wound about 5cms by 2cms and it must have been half a cm deep. It got infected too so going to the toilet was pure agony. I had lots of salt baths which eased the pain and helped clear the infection. Im guessing this along the lines of the sort of pain I can expect with treatment? I've read on here about portable bidets, how do these help. Also did you take any supplements?  Thanks again.

Gaynor x 

Hi again ,

That’s great that things are moving quickly for you especially in the current climate.

I completely understand the discomfort you describe following your surgery, my wound was stitched but I was warned the stitches would possibly burst because of the nature of the position of the wound, which they did 5 days post surgery so like you I had an open wound & although I didn’t get an infection (I was sent home from my surgery on a cover course of strong antibiotics) I found I was at my most comfortable in a salt bath. Yes the pain i found was very similar toward the end & the 2 weeks following treatment, I was ok apart from a touch of radiation cystitis up until I would say the beginning of week 4 when things began getting a bit sore. I bought a portable bidet but didn’t use it although many people say it was their saving grace. I think lots of people that have severe skin reactions soak in the bidets as you would in the bath but some have found going for a wee or a BM in water was less painful than going normally. 

Regarding supplements this is a very personal thing, when I was diagnosed I began taking a good quality multivitamin/mineral supplement along with a high grade fish oil supplement & live goats milk kefir all aimed at improving my immune system, I spoke to my oncologist prior to starting treatment & the only thing I was advised to stop was the kefir as it contains live bacteria & obviously the chemo wipes out your immune system so even adding in good bacteria isn’t a great idea, I started this again approximately 6 weeks after my treatment had finished. I also took a good quality collagen supplement as our bodies stop naturally producing collagen in our 20’s/30’s & I wanted something to help me with any healing I would be doing post surgery & post treatment, I still take all of these now plus a vitamin D3 with K2 supplement as I have some osteoarthritis. 

Good luck for Tuesday. 

Nicola

Thanks for your reply and fab advice again. Im already taking collagen supplements and a vitamin c supplement called Altrincham C so will pick yp some multi vitamins too. I tried Keifer a while back on the recommendation of a nurse at my doctors but didn't like it so will look into some supplements. Im hoping I don't suffer too badly with the side effects. Im 49 fairly fit and healthy and super stubborn so won't give in too easily. Also hoping to carry on work as much as I can although I have the back up of full pay so will play that by ear

Thanks again

Gaynor 

Hi again ,

It’s definitely the best way to approach this, playing it by ear & being fit & healthy is a good starting place, we’re all individuals & therefore our reactions to the treatment are individual too. One bit of advice I was given when it was decided I was to begin chemoradiotherapy was to start moisturising my nether regions, which I did, just to get my skin in as decent shape as I could prior to treatment & I continued with the moisturising throughout my treatment too. I just used an aqueous cream beforehand & my radiotherapy team provided more throughout.

I didn’t work throughout my treatment although I had very few side effects from the chemo side of things, fatigue was the biggy for me which I think was possibly a mixture of the chemo & the radiotherapy but it was nothing a nana nap in the afternoon didn’t sort out, I do know of a couple of people that continued working throughout at least some of their treatment. 

Nicola 

I love a nana nap now lol. My hubbie wants me to take the time off, he said I should be concentrating on getting better and not be getting stressed with work. I work in customer services for the council so although I'm working from home it can be a bit stressful especially over the last year. Thanks for the tip on the moisturising I have some cavilion cream which I was recommended when taking the bowel prep for the colonoscopy so will make a start on that. :-)