Anal cancer new diagnosis.

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I had a colonoscopy and was told I had a tumor 30mm 4 inches from anus, but my consultant did another colonoscopy 8 days ago, and I have only  tumor that's 4cms from my anus,  and is 35mm. I was looking at a big op through the stomach, now I'm all over the place again, he's sent my scans and reports to Manchester, to see if someone there can do the op locally, but I may lose my anus, the tumor is T2, and he says they have a piece of equipment in Manchester that they can use to see how far its gone through the wall of the bowel, it's on the front, towards the vagina. He says that they may be able to do the op through the anus, or try radiotherapy and chemotherapy, or it may be the op through the stomach. I'm not bothered about having to have a stoma, but I'd like to be able to have an input into what they can do. I don't know what to do. Its going to take approx 2 weeks for Manchester to get in touch, then they will go from there, but they've just built a Christie hospital onto the site of the hospital where I live just 2 miles away. It's a ultrasound that can be inserted into my bottom and see how far the cancer has gone through the wall of the bowel. I had my initial colonoscopy on the 11th June, and the Dr was fairly certain it was cancer, so I had the CT scan and MRI, I don't know what to do. People around me are taking the news a lot worse than I am, I feel I have to be strong foe them. My other half is terrified, he told the consultant,  my sister seems to be worried she may have cancer, she is a bit of a hypochondriac!! I feel lost, like I'm on an island that's getting smaller and smaller, I don't know what to do, or say, or questions I should ask. There have been a few people on here who have been helpful, and very nice, even though they too are suffering with, or just diagnosed with cancer, or are supporting loved ones who have cancer. My hubby won't let me make a cup of tea, my sister rings me every day, but they both want affirmations from me that I'm going to be ok, and I can't do that, although I may say it's going to be ok, I don't know that I will. The only ones who are treating me like normal is my cats!!! I'm just venting I guess, I've been told I will probably lose my anus, I didn't ask him what that meant, but someone on here did tell me. I guess I'm lost and can't talk about what's going in, in case I upset my husband or sister. They're the 2 most important to me, I don't have kids, also my nephew and his kids are very worried, my sisters son. My brother wasn't interested, I don't think he believes me, his son, who's has 4 girls that I adore, he's not even contacted me, though I rang them so they didn't hear it from someone else, now his girls don't contact me, the youngest girl is 8. As I said my island is getting smaller, it's like some people think they can catch cancer if they've been around me. Also in the last few days my bottom has become very itchy and is getting painful. I don't know if I should tell someone, and if so, who do I tell. Getting a telephone appt with my GP is so difficult, and it's classed as routine, so it's very 3 weeks til they can just call me. My consultants going on holiday for 2 weeks, and my details have gone to Manchester,I'm lost and trying to be strong for people, while I'm slowly drowning in worries that I can't vocalise in case people start to worry more, and make themselves ill. Just venting, I apologise for the long thread and for being a pain to anyone who reads this, I'm just releasing my feelings and worries I guess.

  • Hi I'm so sorry to hear of your diagnosis. Please don't feel the need to apologise for expressing how you feel. That's the beauty of this site, it's a safe space to be able to share your innermost thoughts so vent away as much as you need to!

    One part of a cancer diagnosis that isn't talked about much is managing other people's reactions to the news. There's a range of reactions, including the ones you have set out above. A cancer diagnosis literally tips your life upside down and all you want is normality. It does sound as if your family members are in some degree of shock and are unfortunately looking to you to provide reassurance. This prevents you from being able to discuss how you feel about the diagnosis. Do you have any friends that you can confide in? I couldn't really share my fears or thoughts with my family members but fortunately have good friends who provided me with emotional support. It's so important that you are are able to speak freely without fear of upsetting people. 

     Another reaction to the news is for people to simply be unable to deal with the news and behave as you brother and nephew have. They don't know what to say, so they say nothing which is hurtful. It may be that when the news has sunk in for your husband and sister, you may be able to share how you feel with them.  In the meantime please consider calling the Macmillan Support Services for emotional support. Most services are open 8am to 8pm, 7 days a week,  it's free to call on 0808 808 00 00 

    The itching and pain you describe are usual symptoms of anal cancer. A lot of people on this site have recommended Piriton hay fever tablets which are available to buy over the counter but please check with your treating team before you take any new medication. They can cause drowsiness so most people take them before bed at night.    I see you're in a sort of limbo as you're being passed to Manchester but in the meantime I would call the hospital that has been dealing with you and ask to speak to one of the colorectal nurses who will be able to provide advice to you.   Please always post on here for support, someone will always be around to help you.  Bev x

  • HI Miss Tee,

    I'm glad you are so calm and strong about the possibilities surging before you- that degree of uncertainty must be tough to manage! It sounds as if managing your people is your biggest challenge. I'm so glad your husband and sister love you so, but can also see how it's becoming a burden for you to have to reassure them all the time.

    Your island metaphor is kinda perfect.

    I"m so glad you found your way HERE to vent. I'm really grateful for this space too. It's such a huge relief to be able to share the real and sometimes hinky details with people who get it and don't recoil in horror or embarrassment. 

    Cats are also very helpful. I credit surviving treatment to my Siamese, who pinned me on the recliner and gave me healing purr therapy for hours every day when I got home from treatment. 

    You absolutely need a contact person. When I was having trouble getting information, I resorted to calling one of the site social workers and asking her to advocate for me. She was brilliant. I"m not familiar with the NHS (although I long for something similar here) but is there anyone at your treatment center who can take your call? Your GP probably won't be much help. 

    For the occasional awful itching I use a thick pink ointment called Calmoseptine. It works better than anything the cancer care team suggested. It's goopy but at least doesn't have an odor, and it works. Hope it's available in England. 

    Never apologize for sharing your fears here. I'm so glad to have been able to share mine, and hope that occasionally I can reassure someone else!

    Suz

  • One thing about a cancer diagnosis is the shock you feel at the various reactions from those who love you.  Your brother may well be in denial (nothing like a cancer diagnosis to put people in touch with their own mortality) and it may well be that his son and family aren't contacting you because they feel you have enough on your plate.  And your sister and husband are the opposite, wanting to reassure themselves that you are ok and that they will look after you.  Please don't worry about upsetting them; yes, they may well get upset if you share how confused and anxious you are, but you may need to stop being strong for them for your own sake.  Trying to keep it all together adds hugely to your own stress.  And don't forget that this is a journey that they are on too, it isn't easy for any of you.

    There have already been some excellent suggestions about outside organisations that can help.  I am hoping that gradually your family will come to terms with what is happening and you as you go through treatment you will be able to talk openly to them about how you are affected, and they can share with you too (without you feeling responsible and trying to make it all better).  Thinking of you and sending a big hug.

  • Hi ridetbred, thanks for the message, my sister just rang me as I was getting up after yet another night of little sleep, she said my nephews wife had asked how I was, she told them,and the reply was "that's good, they can chop it out and she'll be fine". This woman is in her mid 30s, I just hope none of her family has to go througuh it, as she seems incapable of understanding how people feel, nor understand the devastation of a cancer diagnosis and I'd rather she didn't know in future, she only had to text me and I'd havering her and told her, but I've become persona non grata!!!

    I will ring the colorectal nurses on Monday and speak the one of them about the itching. 

    Cats are my lifeline at the moment, they sit and listen when I'm venting, the older one is 4 amd we rescued her and her siblings from beside a swimming pool in Majorca, took them to the vets,and found homes foe them,we have many friends over there,  but something made me decide to take the smallest one home, after 6 weeks of course, she's very vocal,listens well and gives her opinion, whether I like it or not!! I got a wee kitten last year, she's 18 months,I only got her as the Spanish cat was having separation anxiety when I left her, they're the greatest of Padstow,and they seem to know when I need a fuss, they give their purrs very freely, youngestone thinks she sa dog, she plays fetch, rolls over and links me to death,never known a cat to do that, she pins me down and lick my face, or hair, sweet things, I'm waffling. Thanks for the message, I hope you go on ok xx

  • Hi Miss Tee, just wandered how things were going? Have you now seen your consultant or heard from Manchester? 
    i wanted to reply as my family situation is so so similar to yours. 
    I’m really close to my sister so when I was diagnosed in jan I felt all of what you mention. My sister now thinks she has cancer too, but that’s not helped by the fact she’s found lumps and despite mammogram and ultrasound being ok she isn’t convinced.  My diagnosis was missed though so I know why she’s feeling that way. I just hope and pray it’s not. 
    i think family and friends really have no idea and they too are dealing with new thoughts and emotions. Completely different ones to us. I still get the whole, of just cut it out and it will be ok comments. It’s frustrating but I’ve learnt that people don’t mean to be thoughtless they just want to be positive and think it’s the right thing to say. 

    im a community nurse so have had a lot of experience of dealing with people in the last stages of cancer and that was one of the biggest hurdles at the beginning for me. As the patient I think we come to accept that the worst could and in some of our cases is going to happen, whereas family don’t ever accept that. 

    I’ve got to a point where I hardly talk to my close family through fear of upsetting them and then me feeling like I’m in the wrong so I now vent to some best friends who I know have experience of loss through cancer and so know where I’m coming from. 

    i hope you can find someone that you can confide in, if not this place is a brilliant place for that xxxx

  • Hi Ker25, things are looking up on my part, I think, my sister is now a good support, other half still terrified,  so if I'm weepy or need to vent I either come on here or ring my little sis,my nephew and his wife have distances themselves,but that is their loss, I have bigger things to worry about. 

    I saw Mr Donnelly at Manchester,  before he had even thought about doing the colonoscopy he was apologising for not being able to help me with TEMS op, that was to be done via my bottom, so I got home, rang my local colorectal nurse and said I'd have the big op at my local hospital. He rang me on Wednesday, said he wanted me to have the best outcome,  and he thought seeing the lady at Wythenshawe to have the op done robotically would be the best outcome, Mr Donnelly also had mentioned that, but it would be a wait, so my consultant said he'd try and sort something out, he rang me back a couple of hours later, saying he'd spoke to Deena Hargy,  that may be spelt wrong, she was on holiday but took his call, he said she'd see me next week, even though she had no clinics,with a view to doing the op early September,  I was gobsmacked but yesterday I got a call from the colorectal nurse saying she would see me on Monday at 10am, so fingers crossed I will have thos out of me very soon. But it has gone into a lymph node,  so I may need chemo afterwards. 

    I understand that people think that just cutting out the cancer will be cured and need no more follow up, but as my nephew and his wife are like this, they've not even tried to understand what's happening, how I feel, but as I said I have bigger things to worry about. People on here are great, they help me enormously, whether I'm venting, or looking for help, or even when I'm waffling, which I do a lot!! There's always someone who will have a kind word, info on what they went through, going through, or supporting someone through cancer, I've had so many people who have talked about stomas, which is something I may have, I'm not sure if it's gonna be permanent,  but doing the op robotically is supposed to be an "organ saving" procedure. 

    You have support from friends, which is good, but you don't have to worry about upsetting your family, maybe they are being led by you, by not talking about it, maybe they think that you don't want to upset them, or you don't want to talk. I dont know, I know my sis stepped up when I broke down and has been a pillar of support for me, I don't know, as everyone reacts differently, and I don't know your situation, friends are a god send, of they understand what's going on. I hope you get the support you need, as I said people on here are so good, support, info, reality check, they're here with the best of intentions, and are another great support system. If your family are close, you could just ask if they want to know what's going on, treatment etc, at least give them a chance to support you. I'm not close with my brother, but my sis is great, there's no other close family, I have an 87 year old friend who has been like a mother to me since I was 9, Lord I feel old, that was46 years ago, and I take her for a drive out in the country lanes and she's been a great help, she is a reality check person, she keeps me grounded and living in the present. 

    If you need to vent or need to waffle like I do, I usually check a couple of times a day, you're welcome to vent to me,  I have found so many people who have helped me on here, I'm humbled by them, as I said, I have an early that you can bend anytime. Rosie xx

  • Good to hear from you again, Rosie! I'm so glad that your sister has calmed down and become more of a help and less of a worry. Hope your honey gets himself together soon too.

    My bestie has a stoma, and I'll share with you what she shared with me. She didn't lose her anus through cancer, it was because of ulcerative colitis. For her, the pain of the condition plus the endless misery we all know all too well of endless DREs, meant that the stoma was a welcome relief. There are a few insoluble fiber foods (like raw broccoli) which she can't eat, but for the most part she wolfs down burgers, swims, hikes for miles, looks fantastic and (dare I say it) has sex every dang day of her life which sounds astonishing and a little exhausting. 

    It'll be good to have her around if I end up needing one.

    It sounds like things are moving apace for you, which is wonderful, get the robot in there and all that taken care of, and you can move on to the next step. 

    Keep us posted!

    Suz

  • Hi ridetbred, the stoma doesn't bother me, I want the cancer about asap,  I don't know the percentage re if it could be permanent,  I know my consultant said if he did the op, which would have been through my stomach, I'd need a stoma while it heals, qnd 40% of them aren't reversed for a number of reasons. My tumor is very low, only 4cm inside my bottom, which is the problem, it's so low they're not sure if they could leave enough after removing the tumor and the node, and all of my rectum, and leave enough room to be able to join up after I've healed, which is why we're doing the op robotically

     I'm.not sure what he meant when he said it would be organ saving, as I had a letter today from him, saying about doing the op robotically, he said it would save my sphincter, now this hasn't been mentioned before, the 'barbie bum'  I'm not averse to it if I need to, but I'm a little confused now, l will ask on Monday, see what thes lady says. I want this tumor out so badly, I was told on the 11th June I had cancer, since then all I've wanted is to get it out. I know my consultant I'd trying to do the best op foe me, he keeps saying I'm youn, I'm 54 and feel 94!!! Anyway, if she doesn't thinks she can do the op robotically, then I don't have any other options but the big op. He said after all the surgery I've had it would maybe be difficult cos there's bound to be scar tissue, I had hysterectomy and the year before that I was cut the same way as the he, so they could tie off nerve endings and blood vessels, I had endometriosis,  and also had gall bladder out, and appendix, so that may throw up some complications which ever op I need!!Sis has been a big support after she understood that she probably wont get it, even though she's a sibling, Steve is doing OK, but just says he's terrified,  he will look after me very well, I know that, it's his head I'm worried about, and the stress, he keeps forgetting things and wanders round in a daze, I keep telling him that it's early, T2, though we now know there's nodes that are involved, so may need chemo, I will cope, and so will he, day by day living in the present. We went for a meal today, a little country pub, thoroughly enjoyed it, though the horrible cramps after I eat aren't so good, but buscapan is helping with that. 

    Your friend is living her best life by the sounds of it, I'm not too bothered about having to have a stoma, at least I'll still be here to not eat broccoli!! Hope you're doing well, and I'll keep everyone posted, I have to say I've had a lit of support from people on this site,  they've been helpful and propped me up, given advice etc, its a great site, I can't thank people enough,  everyone's just so nice. Take care Rosie xxx

  • Hi Rosie 

    thanks for replying. I’m glad your sister has stepped up. Mine is a massive support and has even shaved her hair to raise money. She comes to every a appointment alongside my husband and always try’s to reassure me if my mind wanders. However she gets anxious the minute I mention cancer and so only likes to talk about it when we have a meeting due or something.

    sometimes I just talk about it in general and she has to dash to the toilet with anxiety nerves. She’s lost a lot of weight, more than me and so I just worry about her and therefore keep it minimal what I tell her. 

    i have an amazing sister in law and friend who I can talk to but my sister in law is pregnant so I’m trying ti not talk about negative stuff ti her. It’s so hard. I also don’t want to have to be talking about me all the time. 

    I’ve got 5 weeks off treatment atm but my head is all over the place. I thought I’d enjoy the break but I’m so anxious.

    i really hope you get your op soon and they can remove it with minimal effect for you xx

  • Hi Ker25,  I know its difficult for family to get their head around, especially if you're, like me, the only one who's got/had cancer, I have found I know nothing, I still don't know much more about it apart from what you see on TV or hear about, I scared myself by looking on Google, so I just joined here and people have been a good support and also for information. I know what you mean about your sister, mines the same, she's OK if wete talking about the consultations I've had, she came yesterday to visit, I showed her the latest letter I got on Saturday, I'd focused on some thing in the letter, she focused on another and then she had a mini meltdown. She has a granddaughter and 2 step grand children, she doesn't treat them any differently, she only has 1 son, but she doesn't get along with his wife, and she is a testy woman, sis is very patient and holds her tongue when his wife is around her, then she breaks down, because his wife is not a nice person, her granddaughter is the youngest of her children, and she has a mild form of autism, she is easily stressed and will chew her fists, hair, even knees. Her mother doesn't know how to deal with her, so she shouts, which makes matters worse, so I don't like to add to her stress, but she's there if I'm having a weepy do. I'm gonna post the parts of the letter in the colon cancer group, as I'm now a bit worried, but my sis is easily stressed, so I try not to add to her stress, but she is the best, and thinks of things I don't, hence her breakdown yesterday. If your sis is like mine, then I understand,  and I have found people on this site so good, both for info and for support. My other half is still at the "I'm terrified " stage, if I try to tell him things he says "tell the Dr " we are divorced, but are back together, spent a couple of years apart, even though I still saw him most weeks, a few times  week, went on holiday together, we just seem to bicker when we live together, so he's in the flat we bought in 2008, and I'm renting the flat above him, it works!! We have a place to go when when we bicker,  but trying to explain anything is difficult, like last night, I didn't sleep well, and then at 3am had awful stomach cramps, go to the loo and spent nearly 3 hours on the loo, I was sweating, soaked 3 large towels, and the cramps were awful, eventually things moved, but it was a chore, so when he came up this morning I started to tell him and he just repeats "tell the dr" well I do, but if I forget something, I'd have liked him to know and remind me, so that's still a problem, he's sticking his head in the sand, he's 10 years older than me, I'm 54, my head thinks I'm 24, body is like a 94 Yr old!!! But I can understand how you feel, and bottling it up is also not good for you, glad you have a great sister in law, at least you have someone who will listen, I do understand how you don't want tobworry her because she's pregnant, but I'm sure she would tell you of she wasn't coping. But if you ever want to unload the people on here are so good, I know 1st hand, there's no question that's daft, nothing too small, and they don't mind if you get to the nitty gritty, they've bee through it and so many people have been where you are, they will always help you, listen to you, if like me you waffle, and I'm always here, you can bend my ear, I don't know if there's a way that we can make conversations private, that's something I keep meaning to ask someone, if we can you could always bend my ear if you need more support, I'm usually on here 3 or 4 times a day, so l will try to find out, as it is you're free to bend my ear on here, I'm sure others would give support too if you wanted to start a new thread, there are lots on here that are supporting people who have, has, or recovering from cancer, everyone is helpful, and has a kind word, but I will always try to answer people who ask anything, or if I need info. You're not alone, and l know if you had questions they will answer them, I may need chemo after my op as its gone to lymph nodes, I know nothing about chemo, apart from it can make you feel sick, tired and you may lose weight, so if and when I do need chemo, l know I can ask others about their experience,  and you may be able to help me!! But even just waffling, like I do, a lot, they still don't mind. So if there's anything I can do to help, however small, please ask. I'm about 5o post in the colon cancer group about the letters I've got, to see if anyone can make it clearer than my consultant has. Rosie xx