7 weeks post treatment issues

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Hi all. Hope you are all battling on. 

I finished my treatment 7 weeks ago now. I feel I've turned the corner in my recovery but still have a few issues so advice would be most welcome please.

My skin has begun to heal although still very sore. Having a bowel movement is still something I dread as it's painful and feels like razor blades. I am also still suffering with a bit of leakage from the back passage that makes me sore. Having to wipe and clean constantly. 

I had a CT scan recently to check for no blood clots. Fortunately no blood clots were found. I'm suffering since treatment with what my oncologist believes rs lymphodema probably caused by the radiotherapy. I have a lump and swelling on my lower right leg which throbs and aches. This means I'm unable to stand for very long periods of time. Has anyone else suffered with this?

The ct scan also picked up osteoporosis of the spine bone. I now have to have a bone scan but not really sure what's involved or whether there's any treatment for either issues.

My oncologist did say that the scan showed no signs of cancer so that was some positive news although a MRI scan will have to confirm this as it's more detailed but fingers crossed.

I have stopped falling asleep in the daytime and don't take much in the way of medication anymore. Still not working as I have a very active job so need to feel ready before going back. I'm extremely bored though as I'm sure most people are during lock down. 

The other thing I wanted to ask is advice to resist the urge to scratch at night. I get very itchy and scratching makes me so sore. I'm sure the skin is trying to heal but by scratching when I'm itchy I'm sure I'm doing the skin more harm than good.

Sorry to bombard you all. I really appreciate any advice anybody has to try to make recovery a little easier.

Thank you all in advance x

  • Hi Michelle,

    I am exactly eight weeks post-treatment, and your posting resonates with my current experiences.

    Going to the bathroom still hurts for me - especially at the start of the BM. I have a small fissure slightly inside the sphincter and some swelling. I'm normally slightly constipated and rarely have loose stools. Going to the bathroom is a big morning production, and I feel sore during and after. I also feel full and bloated at times, which is unnerving, and I worry that all the inflammation may set off new cancer growth (because worrying at this point seems so easy to do:). 

    I have a blood clot in my left arm from my second Mitimycin infusion. It's in a small vein, so DVT is unlikely. I see a Vascular doctor next week, but supposedly the clot should resolve itself. About a week ago, my left ankle started swelling (just slightly) and I have some aching and numbness in my calf; I had an U/S yesterday to rule out a blood clot. Thankfully, I didn't have one, but I have never had swelling in my ankles in my life. I've heard swelling can happen after treatment, but again, it's unnerving. I also have a lot of muscle ache and stiffness in my legs and arms - it feels like I ran a marathon the day before, but I didn't! I am walking about 10,000 steps a day and stretching, but I feel so tight and sore. I have to believe this is the fallout from treatment.

    Three years ago, I had back surgery for ruptured discs, and I've felt pretty good since then (playing tennis, etc.), but I think my back is acting up and giving me sciatica.

    I'm also itchy - not like it was a month ago while the skin was just healing, but I think our skin is still very sensitive, and itching can be set off easily. I think we need to keep applying creams liberally to the area.   

    I don't think I offered one bit of advice, but I wanted you to know that I'm walking the same recovery as you are! Great news on no sign of cancer! If I may ask, what stage were you and what size was your mass? My mass was between 2 and 2.5 cm but two lymph nodes were suspicious for cancer, so I was staged at 3a. My first check-up is April 14th (consists of a PET scan, labs, and three oncology meetings), and hopefully, I'll hear good news.

    All the best to you as we navigate these first few months post-treatment.

    Sarah   

  • Hi  & ,
    I know it’s not much comfort but neither of you are alone with these issues… As you both know I’m much further down the line than both of you, I’ll be 3 years post treatment this June & I too still have skin issues & I’m trying to come to terms with the fact that this is probably the way it’s always going to be for me. I still get itchy from time to time,  I still bleed every so often when having a BM which often leaves me quite sore for some days afterwards this worries me each time it happens, I regularly check for new lumps etc. BM’s are often uncomfortable if not exactly painful & I have to keep on top of things with the softener medication or it kicks off one of these episodes!  I suffer bloating too but I think it’s food related as I’ve pinned it down to certain things. If the itch gets too much for me an antihistamine & a lathering of sudocrem usually does the trick.  have you tried using water wipes to clean yourself opposed to toilet paper? I can also only wash with aqueous cream as even the mildest of soaps, shower gels etc,, set off a skin reaction, I’ve seriously tried everything else out there but always go back to aqueous cream. 

    I completely understand the boredom but don’t rush yourself where work is concerned, just take things at your own pace it’s still really early days for you yet, go back when you’re good & ready & also see if a phased return would be possible. 

    I’ve had no issues with lymphodema personally but have a friend that had some pelvic radiotherapy (cervical cancer) & she has it in one leg & from what I understand it can be really uncomfortable & she wears a support sock to help with this. 

    My lower back, hips & thighs often ache, my lower back & hips I think is possibly my osteoarthritis that has been accelerated by the radiotherapy, my thighs I think is probably more muscular. I know a couple of people that have been referred for bone density scans following our treatment although this has never been mentioned to me by either my oncologist or surgeon. I take a vitamin D supplement, a general multivitamin & a collagen supplement but that’s just me trying to do what I can to help ease these issues I’m not sure how much they help. 

    Nicola 

  • Hi Michelle75300

    I’m 10 weeks post treatment and like you dread the BMs like you say razor blades but definitely not as bad as it has been and I think affected by what I’ve eaten. I’ve also have a couple of not making it in last week, I thought the urgency was improving but again I think I need to identify the things in my diet which cause it. 
    I do seem to have aching hips which I don’t recall before but I have restarted Pilates and walking quite a lot. My tiredness is not so bad now and I’m not snoozing during the day. 
    Itching is annoying but I find not so bad if I put cream on and stops soreness. 
    I am due MRI and CT scan in next two weeks so will know whether it’s all gone then. Bit nervous about that...... I don’t think I’d computed how long everything goes on after treatment ended or the long term situ! The new normal...... I’m just hoping like you the BM agony goes soon!! and of course the little bugger (it wasn’t that little at 7cms) has gone!!

    Here’s hoping we all come through positively with few side effects!! 

    Ruth x 

  • Hi Sarah

    Lovely to hear how you are doing considering we are very close to when we both completed our treatment.

    Sounds like you are doing brilliantly!! 10.000 steps a day!!! Amazing!! I can barely manage a walk around the block because of the lymphodema I think. Don't think there is much of a cure for that. I do wear a support bandage. Just hope it settles eventually and becomes less painful. Have to do things in short bursts and then sit down for a while. 

    I managed to see my doctor yesterday. She looked pretty horrified at the state of my skin. Said it was very red and inflamed. I've tried every cream on the market and most of them sting. Doctor advised good old fashioned vaseline so a bought a huge tub. At least that doesn't sting. She also prescribed me a thrush cream. Just Incase I think. Seeing my specialist today so will also bombard her with current symptoms.

    You are doing brilliantly Sarah. This has been the hardest battle of my life so I think we both need to pat ourselves on the back for coming this far.

    Have everything crossed for you for great news. My tumour was stage 4. Had spread to my lymph nodes but no further thank God. Was misdiagnosed twice so don't think that helped and my tumour was 7cm in size!! Trust me I could feel it! 

    Please let me know how you get on. Sending positive vibes and hugs.

    Michelle x

  • Hi again Nikki

    Lovely to hear from you. It's reassuring to hear that you still get the odd issue 3 years on. I guess that's normal and something we all have to expect. It must be so scary though every time you get a bleed or pain or anything. I think I'd panic and think the cancer was back!! 

    I won't be rushing back to work. I'm a prison officer so my job is very physical and I will need to be feeling fit and 100%. I'm very lucky that my work have been very supportive. They are still paying me and have said that they will make my return as easy as possible. I will definitely be on phased return. 

    Not sure what to think about a stoma. Did you have one? I'd rather not but every time I have a very sharp and painful bowel movement I wish I had one.

    We will see how things settle.

    Thank you so much for your support and advice. I also only wash with aqueous cream. Anything else just stings!!

  • Hi Ruth

    You are also at a very similar stage to both Sarah and I. Great to hear how you are doing.

    The wait for the scans to tell us whether all of this nightmare has been worth it is  unbearable. I pray you get good news. I'm sure you will. My tumour was the same size as yours. Pretty massive! Were you also misdiagnosed at the beginning? Thank God anal cancer is a slow grower! Did you ever consider a stoma? Not sure how I feel about that. Was offered one during treatment but said I'd rather wait.

    I do worry about incontinence. I'm reluctant to even take a trip to the local park with my grand daughter incase I get caught short!! I've recently purchased a disabled toilet key for £5 through Macmillan. You can also purchase a map for £3 to tell you where these toilets are located. Worth every penny I think.

    I've lately begun leaking from the back passage again which stings and makes me sore. Hopefully the vaseline will help with this.

    I wish you all the best with your recovery Ruth. Please let me know how everything goes.

    Best of luck and hugs

    Michelle x

  • So it turns out that my consultant is happy with my healing and that thrush is the cause of the itching. Got a prescription for that. 

    It's also been noticed from my recent scan that I have a small fracture on my spine... how have I been walking around blissfully unaware??? 

    I also apparently have an enlarged thyroid that she doesn't think is cancer ( I do hope not!!) May be needing an operation as if left untreated could restrict my wind pipe!! There's always something!! Not the greatest news. Have you ever heard of these things before?

    She also said that all being well I may return to work during may... as long as it's on reduced hours and light duties! 

  • Hi ,

    Yes I think regardless of the type of cancer we’re diagnosed with to something extent it leaves us more aware of our body & I do find myself on high alert when I get these episodes although I’ve been assured that it’s just fissures & is pretty common following our treatment. 

    I didn’t have a stoma, it was never suggested to me by either my surgeon or oncologist prior to my surgery or treatment.… Do you take stool softeners at all? I take one per day in the mornings but whilst I’m having an episode of soreness & bleeding I up it to twice a day & try & keep things as soft as possible & that way there’s no pain just a little discomfort. 

    Great news that you’ve seen your consultant & were prescribed something for the itching. Did they mention if the spinal fracture was radiation related? I was warned by my oncologist before I signed the consent forms for chemoradiotherapy that this was a possibility although he said it was more coccyx related rather than spinal. Also you’re the third person I know that’s had a diagnosis of AC that have gone on to have non-cancerous thyroid issues, how odd, maybe just coincidence as I can’t really fathom a connection can you?

    Nicola

  • Hi again Nicola

    Yes I do take stool softeners. Couldn't imagine trying to pass a hard one!! Ouch!!

    I'm guessing the spinal fracture was treatment related although she didn't say. I'll be referred to a specialist though osteoporosis does run in my family. Hoping calcium and vitamin d will sort that problem out.

    Enlarged thyroid is a sign of cancer. Obviously I will go into panic mode until I know for sure it isn't. Very interesting that you know others with that issue and thank God none of those turned out to be cancerous. We will see....I need to think positive but I guess it's normal to worry x

  • Hi   I hadn't heard of thyroid issues before in connection with those diagnosed with A/C but what has said is reassuring. I saw in one of your posts above that you are leaking from your back passage and are stingy and sore. I'm 18 months post-treatment and on and off I have mucous leaking out, it is generally a sort of yellow colour but it causes soreness. When this happens I just make sure I keep as clean as possible and I use sudocrem which massively helps.  18 months on I rarely have a painful bowel movement, it definitely gets easier as time passes. Bev x