Where's the after treatment advice?

Hi MrsBadass ,

I had a bit of a knee jerk reaction to my diagnosis & went full on keto. I also added in several supplements some of which I had to stop when I began treatment. I lost around 3 stone pretty rapidly & part way through my treatment I had to add in extra carbs to slow down my weightloss or my treatment would have needed re-mapping!

Since then I’ve put weight back on as a keto diet was far too strict for me personally to sustain long term so now I tend to just try & keep my diet as clean as possible. I do fall off the wagon sometimes & don’t let it rule my life so if I’m invited out to eat I don’t beat myself up enjoying the food on offer.

I do take a good collagen supplement along with a high dose vitamin D with K2 & an oral vitamin B12 spray. I’m trying to concentrate on my gut health at present, I used to get a fantastic raw goats milk kefir from a company online called The Chuckling Goat, I’m going to order some again. 

Like you I’ve a tremendous sweet tooth, chocolate is my thing! I find when I’m eating clean it obviously cuts out processed foods & sugar & my sweet cravings do reduce dramatically, I allow myself a bit of 85% dark chocolate which itches the scratch for want of a better phrase. 

There are so many dietary contradictions out there it is hard to know what’s best but I need to lower my inflammation (osteoarthritis) & I feel so much better when I’m eating clean & off the sugar. 

Nicola 

Hi Ali ,  

I’m now 6 1/2 weeks post treatment and doing well . Going out to theatre , have had a few meals out , walks gardening and generally getting my life back .

I don’t see my oncologist until 3 month and will then have a PR examination , but the scan is not until 6 months . 

I have googled to try and find out what I can do  to improve my chances . I did see a paper by a Harvard professor who said that VIt D and Essential fatty acids helped reoccurrence or getting colorectal cancer . I’ll see if I can find it again and will post if I do.  
My oncologist advised me to supplement with 3000 iu Vit D during treatment , could be to help my bones but it’s also good for the immune system . 
I’ve also started taking collagen and Natural Greek yoghurt daily for probiotics .

Best wishes x

Hi,

I am now over 8 weeks post treatment and feeling so much better.

Still too many bowel movements in a day (mostly in the morning) but they don’t hurt as much, I do have piles but hopefully they are going down with less bowel movements.

I no longer need a nap during the day and have started sorting out my garden ready for spring and I work in the mornings.

I am on the FODmap diet and have managed to put on 2 kgs, I lost 7 during treatment. My taste buds and my appetite seemed to have returned. And yesterday I had a glass of wine with no consequences this morning ! Last time I tried wine 2 weeks ago it tasted awful and I felt terrible the next day.

I am taking Biomel for gut health and it really seems to be working.  Stay strong everyone it takes time but once past the 8 week stage everything generally seem to improve and you will begin to feel normal again.

Jane xx

Hi MrsBadass,

After 6 weeks of daily seeing faces you know, having access to help day and night, stopping is a sudden realisation you are on your own and need to follow other routes - GP was suggested at which I laughed as my surgery isnt great, but they can refer you - private consultation worked for me eventually.

At the same time a cervical smear appt came through, which wasn't going to happen - asked for an alternative and there is one - saw a fantastic team at my local MIU and now have a face and name to contact if anything else happens. 

Keep asking for help it will get you the local support you need x 

Hi Angie SE 

Do you mind me asking what the alternative to a smear test is please? I’m sure it would be really helpful for others to know.

Sarah xx

That's interesting. When I went for smear the nurse could not get speculum in so we gave up. She then reported this to GP who contacted my onc, who replied that there is no point in smears following radiotherapy. The results are just not accurate. What was the alternative you were offered, if you don't mind?

Hi Mrs Vanilla 

I was hoping to find out too, as I wasn’t  aware of an alternative method of testing. For myself after cervical cancer there was no cervical smear tests as I was advised the same as you-tests are not reliable after radiotherapy. I’ve seen some questions over the years in the cervical cancer group and ladies being given different information, hence my curiosity about an alternative test.

Sarah xx

Hi 

Alternative to smear test!

I had to push as a friend has told me about having a colposcopy - the Urogynea team are local to me NHS and amazing!  He opted for a review in six months after examining me and encouraging dilators (I will start using them) also changed from estrogen creams to pessaries which are so much easier - my GP prescribed cream in tiniest tube when we need lots so changed instead of fighting!

A check is always worth it, I would push for a referral to urogynae and don’t panic keep asking as some people just don’t know what’s available x 

I was also told I didn’t need a smear test by a practice nurse as I was fine in 2019 - I reminded them of more recent cancer and treatment I wanted to be checked x 

Push for help and for examination it will out your mind at rest x 

Ah-thank you. A colposcopy is very common in tests for cervical cancer or cell abnormalities and usually carried out in the gynae clinic where I am, rather than urogynae-my gynae consultant is the head of colposcopy at my hospital. 

It’s a closer examination of the cervix using a colposcope, and normally carried out after a smear test has identified the presence of the hpv virus as a more detailed form of checking further. It’s not an alternative to a smear test for ladies undergoing cervical screening as it wouldn’t usually happen where the hpv virus isn’t confirmed as present, unless there are other concerns with the results from the smear test which require closer examination of the cervix. 

Did you have hpv testing as part of your colposcopy? The only way I’m aware of for detecting the hpv virus is by taking cervical cells and checking under the microscope. 

Sarah xx

Hi again 

The colposcopy was because my skin is still so thin and sensitive / sore that a normal smear wouldn’t be possible.  I struggled with anxiety after treatment and the weeks and months following so the thought terrified me.  The point is ask for referral to a specialist as GP surgeries can’t know about everything. Also use MacMillan anal cancer nurse and cancer care line for any worries xx