Newbie incoming

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Hey, I was diagnosed 2 weeks ago with Anal Cancer, hate saying that because it makes me feel dirty and I'm not Sob, did anyone else feel like this when they were diagnosed and did you tell people? Emotions are running wild and I'm trying to put on a brave face. Thanks for reading x

  • Hi Ballerina welcome to the club none of us want to be in. I told most people but not all the type of cancer I had. I never felt dirty about it and you shouldn't either. I started my treatment Monday just gone. This forum is good place to be everyone is lovely and they are either going through it or have been, they have tips for coping with treatment and all the feelings and emotions that will come. Don't put on a brave face specially not on here, I put on a front to start with and I admit still do to some extent but its best to let it all out. A lady on here told me that once you get your treatment plan you will feel more in control and she was right. Now I'm counting down till the end of treatment another thing someone recommended. Everything you are feeling is natural. Sending hugs. Xx

  • Thank you so much for replying at such a stupid hour but I can't switch off tonight. I've been reading through some threads and have scared myself reading about dilaters and vaginas closing up, they told me not to Google anything which I obviously have but never read anything about these things. Although I've received my diagnosis I'm waiting to have a PET scan so they can then discuss a treatment plan. They removed a growth under surgery but apparently some cells were left behind. I also have MS so my health is definitely being tested. Hope you're treatment goes well for you, lots of positive vibes coming your way xxx

  • Been there done that with Google and threads. You want one to say everything was fine. You have to remember everyone is different and will react differently and for all the people who may have some issues there will be those that won't and they have probably moved on with life and don't come here anymore. I had a PET scan, CT and MRI to check for spread etc. I didn't have any surgery prior and I'm having 28 days of radiotherapy with 5 days chemo at the beginning and 5 at the end. Well aware I've only had 2 sessions but so far so good. My consultant and my oncologist said about dialators to me for use after treatment which I'm not looking forward to but trying to take one day at a time and will deal with that when I get there. Easier said than done I know but try and keep busy with things you enjoy to take your mind of everything. Xx

  • Good morning, you are definitely the positivity I need right now, I had an MRI & CT scans while I was on the 2 week pathway, I had a general anesthetic so they could take a biopsy but when I came round they advised me that they had removed the growth, which was great for me, but then I go the news that there were still cells left behind. I think they are looking at Chemoradiotherapy for me too but I just need this PET Scan. If I know what & when things are happening I can deal with things better. I also started a new job at the beginning of September, had no idea about anything when I went for the Job in June, but wow how my life changed in the middle of August. My new Employer has been amazing luckily but what a way to join a new team. Do you mind me asking if you are working & if you continue to do so whilst having treatment? Xxx

  • Hi Ballerina welcome to the group. What you are feeling right now is absolutely normal. Anal cancer is a skin cancer mostly caused by two particular strains of the HPV virus common in cervical cancer. It is said 4 in 5 British men and women have had HPV at some point in their lifetime and your immune system can usually eradicate it in around two years but can lay dormant for years. If your immune system is compromised and also this can happen around menopausal aged women these particular strains can cause anal cancer. Unfortunately we did not have the HPV vaccine they give out now. It has absolutely nothing to do with what Google seem to love putting out regarding sexually behaviour although you are putting yourself at risk with more partners you have but it’s not always the case. Not being judgemental at all but I have friends who have had a jolly old time when they were young with lots of relationships but have not contracted anal cancer whereas I was in a long term relationship when I was eighteen and we split two years later and around six months later met my first husband and married for 12 years then divorced then into another relationship for a number of years and split then married my second husband now been together for 15 years. Hardly a sexual adventure by today’s standards and got anal cancer so it’s down to pure bad luck! It’s entirely up to you who you tell but it’s your cancer and your business not theirs.
    I too had surgery beforehand to remove a sessile polyp which did not remove all the cancer cells before my chemo radiotherapy which was standard to treat the whole body. It had not spread but they give you the gold standard just in case. As said we certainly all differ when it comes to side effects and pain which some can manage on standard over the counter drugs taken at regular steady intervals and some need more opium based which was me. I am over three years post treatment and doing great and although my bowels aren’t the same as before I control it with a mainly healthy diet. The dilators are usually introduced just after you have had your treatment and I purchased some silicone ones starting with the smallest which is no bigger than your little finger! Over time it does get easier with a nice warm bath beforehand and some yes lubricant and RELAX. I constantly did pelvic stretches to keep the pelvis open by basically laying down and bringing one knee to the chest and hold for 30 seconds and alternating and then bring a knee level to the ceiling and the opposite ankle on top of that knee and hold for 30 seconds. Bring soles of your feet together and bring to the chest 30 seconds and then hold each foot and stretch out 30 seconds. I did this at every opportunity to keep my hips flexible because the radiotherapy can affect the bones in this area. Get a sitz bath from Amazon to help with cleaning and sometimes toileting when things become uncomfortable. As said before not everyone gets the same and I hope you are one of them but if you do then preparation is the key and we on here have loads of tips on managing to get through it the best you can and you WILL.

    Julie

  • Hi Ballerina. I am 2 weeks post chemoradiation treatment. I also have MS (secondary progressive). My body could only tolerate 2 weeks of chemo because of the MS and I continued with the radiotherapy. I was told the chemo was just the icing on the cake, the radiotherapy is the main treatment so I accepted that. I needed a course of steroids but apart from that , I tolerated well the full 28 days of radiotherapy! It is good to have it all behind me, to rest and recover. If I have one piece of advice for you, do not let yourself get too exhausted. Ask for help if you need it, and tell all the staff about the MS, so they can help you. 

  • Hi Ballerina!

    I understand exactly how you are feeling because that’s the way I felt myself. I’m about to start chemoradiotherapy on 21 October. I did tell my family and close friends but generally if other people ask I just say I have colorectal cancer- or sometimes I just say bowel cancer. 
    I have discussed with my Macmillan nurse how I felt . I think initially it’s how most of us feel. I hope things go well for you. Keep in touch xx

  • My above response is not from ‘ Dan the Man’ 

    ii am Happyflower- don’t understand where that came from- but then technology is a bit of a mystery to me! I just want to say that I have had great support from people on this group. Lots of practical ideas too which I have found extremely useful.

    I just want to thank everyone and a big welcome to you Ballerina x

  • Hello Ballerina

    A warm welcome to the forum, and I am sorry to hear of your diagnosis.  You have come to the right place as just about everyone on here has been through it and we have lots of tips we can share.  Of course you aren't dirty, none of us who have contracted anal cancer are, we are just very unlucky that a virus which lies dormant in any person who has been sexually active developed into cancer.  

    Please remember that it really isn't anyone's business what type of cancer you have, your health is your own private business and only share what you want to.  It comes under the umbrella of GI cancer if that helps.  I found the less I knew people the more they wanted to know and I became very good at shutting down a conversation.

    The early days (for me anyway) were definitely the worst.  It is such a shock to be told you have cancer and the delays whilst all the tests are done before treatment starts are the worst.  But once it starts you can start counting off the days and it is surprising how quickly it passes. 

    And (easier said than done) avoid doctor Google.  Much of the information on there may be inaccurate, out-of-date and will just give you more to worry about.  Anything you are worried about please discuss with the team treating you, and we might be able to help on here with tips and coping strategies- there are no holds barred on what is discussed either!

    Big hug, we are here to support any time you need it.

    Irene xx

  • Hi Ballerina it's brilliant you have an amazing employer. I haven't been to work this week as the hospital is a 2 hour round trip plus appointment and my times haven't made it practical plus i have found the chemo pump is annoying with clothes. In terms of how I feel I could have gone in. I plan on going next week once pump is of if times work as they have changed them everyday so far. I'm only getting SSP as far as I know so financially could do with working but made a decision that me and my health has to come first. Luckily for me my family and friends have said they will help financially if needed. X