Chin up.

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Hello dears,

Not sure why none of my Macmillan notifications have been showing up! But I'm still lumping along out here.

Going for a CT scan today, my insurance company still won't go for the PET scan I'd rather have and that my oncologist would prefer. Also have to pay $820 out of pocket for the scan despite my 'good' (and expensive) insurance so I'm feeling pretty sour.

I'm sorry to be a downer. I've stayed in this marvelous community to try to help and support folks coming in with the devasatating diagnosis, but I'm feeling a bit low. I'm still having a fair bit of pain- not all the time, but some pain almost every day, and sometimes it's a LOT of pain. I don't even know who to go to for it. My regular doctor is a practice of seemingly hundreds, you never see the same one twice so no one is familiar with me. My gastroenterologist is simply annoyed that I can't handle anoscopies, so I'm going for another EUA in a couple of months and that means WEEKS of bad pain afterwards. Most of the pain the pain is manageable, but for the times it's awful, I can't get sufficient pain relief so I go around scared so much of the time.

I'm still not able to ride my pony, and rarely manage a good bedroom romp. 

I don't want to be primarily an anal cancer person for the rest of my life, but it seems to be eating my brain. Two years out was supposed to look a lot better than this.

I can't help feeling as if all this pain is a recurrence. I also worry about secondary cancers, since getting a full body scan is something no one will even consider.

Will take myself out to lunch after the scan and see if I can locate my old optimism.

Blue Suz

  • Hello Suz

    First of all you are definitely not a downer; this is a cancer forum and no one expects there to be a constant stream of up-beat messages which is unrealistic and more importantly disingenuous to newcomers who may experience similar after treatment but feel reluctant to bring their experience up.

    I think some of the people and organisations treating you have had an empathy bypass; having a sympathetic ear and showing a modicum of understanding would probably go some way to at least improving your mental health.  I am really sorry that your insurance company won't cough up.  For comparison (although I had advanced cancer) the first year I had CT and MRI scans every three months.  This past year I still have CT scans every three months and the MRI scans have been reduced to every six months.  I have a very brief DE and fortunately I have always had the lovely female oncologist with small fingers so although it is painful I recover quickly.  I have never been offered another PET scan after treatment and when I asked why (at my leading cancer hospital rated 'outstanding') the oncologist told me that the PET scan is used more as a diagnostic tool before treatment and because of inflammation after treatment would be inclined to give false readings.  This is the hospital where the cost of a procedure is never questioned - I have no idea how much mine has cost so far but if something needs done, I have an appointment sometimes less than a week later.  

    I never knew how you managed anoscopies, but it is awful that even having the examination done under GA you have such lasting pain afterwards.  To me, a lay person (with anal stenosis) at a guess I would say you have scar tissue that suffers trauma every time you have an exam.  I had anal stretching done under GA in December and the consultant did warn me I would have to continue stretching as the scar tissue would cause it to contract again, I haven't been able to continue because of extremely sensitive skin and piles.  I wish I could suggest something that would help.  Short of visiting a specialist out of the area where you live, incurring considerable costs, I really don't know what is available in the US.  And I am not surprised that you are thinking the worst when you are in pain.

    I am so sorry you are feeling so low - I can't make things better but am just commiserating about a life with ongoing side-effects.

    Sending a huge hug, Suz.

    Irene xx

  • Hello Suz I had noticed you haven’t had any posts lately and assumed you were away on holiday. Sorry to hear you are in pain and what does pain do? It makes us start worrying again and that is only natural. So you are two years post treatment which I’ve been told is a good goal post where the cancer is more unlikely to come back or spread but I know it isn’t guaranteed as what is but it’s a good goal post. As you know I had a lump removed eight months ago which was radiation causal and it was painful recovering but remember well that just before that I assumed the cancer had reappeared. The surgery resulted me in have pain and I had to put off using the dilators for a while. When I started using them around November I noticed brown blood on the tips and this kept happening and did mention this to my oncology who didn’t seem concerned as I had a scan in the August that was clear. But it continued and I thought oh no I’ve cervical cancer now! I had a different oncologist who said she wasn’t happy and put me in for a CT scan which was clear and took a swab of the bleeding. I even took photos of the dilators with it on. I saw a gynaecologist a week ago who gave me a proper smear (I was absolutely dreading it as they use this plastic pendulum) He said he was amazed that I had hardly any scar tissue in the vagina and said it was good that I had been using the dilator diligently as that prevents scar tissue forming. Again he said he was really pleased that apart from some very slight stenosis at entry it was great. I now am having a ultrasound to check the womb lining. I have been prescribed estriol tablets to insert twice a week as I haven’t really been intimate with my husband for so long. The bleeding turned out to be a infection. The worry all them months turned out to be easily sorted. I am saying we have no control of what is going to happen and as we have side affects which in my case is if I eat the wrong diet I either stay at home or now take instant Imodium. The ladies at my gym most had breast cancer and we are a friendly bunch and they think nothing of getting together for social activities and eating out as their bowels have not been affected so it’s dam frustrating at times. If I didn’t have this site to go off on one then where could I go? We all know how quickly symptoms out of the ordinary set off alarm bells and I’ve had a few and they have turned out to be nothing! And I hope that is the case for you. I’m two years eight months and feeling pretty good but never take it for granted as we don’t do we as sometimes a constant itch or ache triggers those worries. I have my fingers crossed you will get sorted soon and see symptoms can just be just that and nothing else. Julie x

  • Hi Suz ( ),

    I have to admit I was getting a little worried about you as I’d not seen you on here for a little while. Please don’t feel the need to apologise either, that’s what we’re here for, if you feel like letting off some steam here’s the place where we’ll all understand. We complain about our NHS & waiting lists etc., but at least we don’t have the wrangle that you’re experiencing right now with extra costs & not being able to get the scans required by your Dr’s! It must be so infuriating when you’ve paid for decent healthcare insurance & now this happens. 

    I think it’s only natural when you’re still experiencing pain on some level that your mind automatically goes to worse case scenario, anyone that’s been through a major health scare would be the same I’m sure, even now 6 years out I still have my moments! 

    I hope your scan went ok & your treated yourself to something lovely for lunch. 

    Nicola 

  • Hi Suz

    So sorry to hear of your troubles and fighting against the system in the US. You are an inspiration on this site and have certainly helped me through hard times.  I totally get the niggling doubts and worries about what your body is doing!  I've just acquired sciatica the past 3 weeks - hip pain, pain down one leg and I was like "why"? Its preventing me from increasing my fitness and I feel like it was caused by the radiotherapy although who knows.  I do know before the treatment my body felt reasonably fit - except my bum lol.  The battling with insurance must be draining in itself even without the pain you are experiencing.  Hang in there and I hope the lunch lifted your spirits.

    Carole x

  • Hi  ,

    I was left with hip pain, lower back pain & bilateral sciatica too Carole, I was advised by my GP to self refer for a course of intensive physiotherapy, My physio diagnosed that it wasn’t my actual hip joint that was causing the pain but Greater Trochanteric Pain Syndrome which is to do with the muscle that runs over your hip. I didn’t hold out much hope to be honest but the range of exercises I was given have worked surprisingly well. I do still get the odd flare up of the pain but I start doing the exercises again & they really do help, the sciatica has all but gone as has the hip pain. It would be worth giving it a whirl.

    Nicola

  • Nicola, maybe I should start doing the physio again, I am encouraged to hear that you did improve.  The physio told me my tendons were inflamed and I did the exercises for six months solid and unfortunately they didn't make any difference.  I still have aching hips and lead legs.  When I walk with my dog I go a roundabout way to avoid two flights of stairs over a railway bridge because it is such an effort.  I should chase up my dexa scan too, it is the only appointment that hasn't come through.  Irene x

  • Thank you, Carole. I got sciatica too, excruciating late last year. Finally figured out a stretch that mostly keeps it at bay. Pretty sure it's a radiation hangover.

    Suz

  • Irene, between the sciatica and my knee, I finally went to PT, bitching and moaning the whole time that it didn't work. My poor husband kept telling me that it takes a LONG time and to just keep at it. 6 months was right about the turning point for me. But the knee, back and plantar fasciitis pain were bad enough that I'm afraid to try any more running. I've got the ol' man and me signed up for a 5K next month. After the marathon I thought I'd never be backed off a little run (walk) again, but I've been at a slow walk for so long that a 5K is soooo daunting now!

    Hugs

    Suz

  • Oh no - I will have to start right at the beginning again!  Running 5k?  My only sprint these days is to the loo, and that is bad enough!

    Irene xx

  • Hello Suz, 

    Aw so sorry to hear you have been having a bit of a downer.  You were the first person to reply to my first post when i was scared after my anal cancer diagnosis and I couldn't believe someone from the US had read my post!  I can remember reading it out to my husband and daughters it meant so much as I felt I was the only one with anal cancer!  You have helped so many of us and are always so upbeat and add a bit of humour to your replies which is such a massive help Heart

    So sorry to hear you are still having a lot of pain two years after your treatment its so damn unfair and its rubbish you have to pay for your scan when you have your so called good insurance!

    I am 19 months after treatment and due an mri scan next Monday.  I know how you feel think we all have down days when we worry the cancer has come back my worst times are in the middle of night can be awake a couple of hours worryng!

    My main problem now is pain in the hips and legs, I was given three appts with a physio who gave me a few exercises then referred me to a resistance class free for first few weeks.  Everyone in the class has had cancer I am probably the only one with anal cancer but I've not told anyone!  Well the class is pretty tough to say we are all oldies and a couple of weeks ago I was in such pain i could hardly walk.  Both legs from my hips down to my knees were on fire - so much for helping!  My nurse did say the radiotherapy can cause pelvic insufficiency fractures which has scared me especially after googling it so thinking of seeing if i can have a Dexa scan to see what state my bones are in!

    We all have our worries but got to keep going so don't think you are on your own we are all here for you like you are for us.  Hope that lunch out lifted your mood and you manage the 5k next month even if you are walking!

    Big hug coming your way,

    Carole xxxHeart