Any suggestions on T3/4 N1 bowel cancer

Cancer
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I've just finished the 6 cycle chemo, had the CT and now met my Oncologist. Although could be worse, I'm not happy.

It hasn't shrunk that much for them to op now. Although It hasn't spread to liver/lung which is what worried me. I am to have a MRI to verify the CT. Then chemoradiotherapy, 5 days for 5 wks. Then apparently I'll Have to wait possibly 6 months for the op. This does depress me as I think time enough for it to spread enough for too big again for op.

If anyone has suggestions or comments, I'd love to hear.

Thanks, Daffs

2

Hi Daffs,

I'm further into my rectal cancer journey than you. 1st diagnosed Aug 10, 5 weeks daily chemo tablets + 5 weeks daily radiotherapy, then a few months gap with major surgery Dec10, to remove section of bowel & a temporary stoma.

Don't worry about the apparent delay in surgery as the rectal tumours are very slow growing. This whole cancer journey is not one any of us would choose to be on but we just have to accept what we cannot alter.

I was diagnosed when I was 55, 3 years ago. Please feel free to private message if you want to, I'll answer any questions you might have.

Bye for now,

Anne

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Hi Anne,

Many thanks for your reply. It's nice to have someone to converse with who knows and understands. I'll take you up on your offer.

Mine was diagnosed Nov. as sigmoide (colorectal) and chemo folfox 6 over 12 wks followed. The CT scan showed very little shrink which I waas'nt surprised as I thought it might not be strong enough to do any good. I had very few side effects. However the MRI showed very good shrink and I was told enough to go straight to surgery and not the chemoradiology. However, I met with the Onco. and Surgeon yest. who told me that the MRI still shows a problem that it might be attaching to bowel walls and op. then would not be advisable. They have cancelled the surgery and I'm to have the chemoradio after all.

I'm not upset about this. Although I was pleased to hear I was getting my op. But after thinking about the messages on other cancer charity websites, I wasn't convinced the op. was such a good thing. Most people I'd read about who did not have the preop radio did get early reoccurance. Where as those who did have the radio didn't. Not every case, but enough to make yoiu notice. At my meeting yest. with the Onc. and Surgeon I was prepared to bring this up, but told no op. yet. I was glad all over again. Not a 'used car salesman' decision.

I'm 70 and with all the news a few weeks ago about those over 65 compared to those under, hasn't gone down very well with me. However I do think I have better faith in my 'team' now.

I'm to take the 5days 5 wks with chemo pills, then a 4 wk wait and scans before the op. I've been told bya big charity cancer org. that 3 mos. is max. wait. 6 mos is too liong and could reappear.

How are you now. It seems a long time since you had surgery. Do you still have the stoma. The surgeon said mine would be temporary. I guess that's getting into things too far ahead. But I have a nasty tremor and worry sometimes how will I empty it and keep it clean.

I'd be happy to talk with you privately.

Take care, Daffs

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Hi Anne

I saw my consultant yesterday following colonostomy, MRI and CT scans.  The news is I am in early stage rectal cancer.  I am still reeling from the shock.  I have to have 5 days of radiotherapy followed by an op, but I haven't been told when all this will happen.  The Consultant said my cancer is very treatable, but I am still beside myself with worry.  If you have had your treatment or an op, can you tell me what to expect.  I have been told I can speak to cancer nurse if I have any worries, but it's not the same as someone who has actually been there.  Thanks for reading this, and I wish anyone going through this good luck and prolonged good health.

Margaret

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Hello Margaret,

having had nearly 6 months of mucus & some blood in my poo, I self referred to the GP who sent me for the colonoscopy & yes they told me there & then I had a large rectal tumour, even without waiting for biopsies, I seem to remember feeling sorry for this fairly young man having to give me this news, I hadn't been gutted by it.   As we left the hospital I remember saying to my husband that, "it wasn't to be treatment at any cost".   I'm a cup half full person & bouyed by a strong Christian faith which may make a difference to my whole attitude.  

 I had 5 weeks daily chemo & daily radiotherapy to shrink the tumour & it worked.     You didn't mention what op they intend doing, will it be open or keyhole & will you have a temporary stoma.

At each meeting with a professional I always took a notepad, often with questions written down & got my husband to ask them if I forgot & he always wrote down the answers. This helped greatly. No question is to silly to ask.

I had a good & very helpful macmillan nurse at the hospital as part of my team, I only met her once but we emailed regulalry & she answered loads of little questions along the way.

One of my best & most helpful contacts was the Macmillan nurse attached to my GP practice, she was wonderful , she listended, she gave prctical advice & through the District Nurses even got me a special pumped up air cushion as my bottom was very sore after 5 weeks radiotherapy - you should escape that part.

I had district nurses coming to the house for some time post op as my wound was a long vertical one from just under my rib cage all the way down, your tumour sounds to be in a more accessible area. 

If you have asympathetic GP then do ask about speaking to your local Macmillan nurse as thet visit at home & it meant I could say anything & cry freely in my own home.

Thanks for asking, more than willing to help if I can. Do let us know what surgery they intend doing, I would phone my surgeon or oncologists's secretaries at times & they were wondeful in passing my queries on.

Nothing is too silly to ask someone, so ask my friend. I found that knowing what I was facing helped me.

Bye for now,

Anne 

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Hi Annie

Thank you so much for replying, your words were so reassuring.  My radiotherapy is to start next week and surgery the following week.  I went into panic mode and rang nurse to ask why they are treating it so urgently.  Nurse answered questions, but she is not very approachable, which is unusual for a cancer nurse.  She has agreed to give me some thinking time before signing a consent form for the op.  I know all this treatment is necessary, but I cannot deny I am very frightened.  I would like to say I don't want this op, but my family feel I must do whatever the mediical team advise.  I have also been told I need a liver scan, this has worried me too.  But I have been assured this is just a routine procedure.  You and I seem to be in the same boat, and although I don't know you, it does not mean I won't be thinking of you.  Good luck with all your treatment,  I am sure we will come through this fine.

Margaret

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Hello Anne,

It seems such a long time I wrote you and hope you are still well.

I hope you don't mind me asking these questions, as I get most of my info. from others' experiences

Here goes.  Your op did come within 3 mos. of the chemoradiotherapy, didn't it?  Did you have any further treatment after the op., chemo?  It's about 5 mos. since your op. and how are you now?  Any experiences in this time, would be appreciated.

I finished the 5 x 5wks. chemoradio 3 wks ago with very little side effects, except for falling asleep on the bus going home from hosp. and missing my stop. The wk following the treatment I began to get the sore bum, could be very fierce, but not to the padded pillow stage, more at the bottom of my spine.  I was very diligent with cream I got from hosp. and it's healing nicely.

My problem is the waiting.  If I have to wait 3 mos. for sugery and I'm only 3 wks into it, I have a long way to go.  I have no dates for anything, surgery and scans. Feel a bit abandoned and trying to occupy myself and keep convincing myself that they will get back to me when they think it's time. Unfortunately I don't have a Macmillan nurse and gp doesn't get involved.

Good luck Margaret with your op.

Godbless,  Daffs

 

 

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The fact that they are willing to operate quickly sounds good to me, the sooner they operate after chemo+ radiotherapy the better the outcome & they can get rid of any nasties the sooner. I hope you have now had a few days to think & decided to go for it, surgery will obviously be the right decision it's the only way to get rid of the tumour & surrounding area.

The liver scan is standard with colo-rectal cancer as that is where it tends to travel to, be reassured it is a good thing as they are really making sure they catch everything.

I've had so many scans, CT, MRI I just take them in my stride. 

You may have misunderstood but I had my original diagnosis & surgery in Dec 10, 4 years ago now. 

Go for the surgery Margaret, it makes the whole thing worthwhile. I had no fear of the surgery at all, let the surgeons worry about that my friend.

It might be an idea to phone the surgeons or oncologists's secretay, the phone number would be on any letter you have  - that way you can ask them for an actual date for surgery. Even ask for another face to face meeting, I certainly met my surgeon before being admitted to hospital.

My surgery was described as a lower anterior resect with a right loop ileostomy, mainly as my tumour was so low down in the rectum. 

Let me know what your actual surgery will be & if you dont know then ask for another meeting to discuss what they are actually going to do & how long recovery will be.

Take care,

Anne

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Hello Daffs,

I also had a wait between the pre op chemo + radiotherapy, your body needs this to continue the effects of the treatment & for your body to recover from it. 

I seem to remember having to wait for the hospital date for my surgery, although I was told it would be end of Dec, about 6 - 8 weeks after my chemo finished. I'm sure I only had a couple of weeks between getting the letter & admission.

So sorry you feel left out & therefore lonely on this journey, Aberdeen were particularly good to me.

Find out where your nearest Macmillan place is, go  onto their website & phone them to find someone local. Is there a Maggie's cancer centre near you or an equivalent support place?

I visit CLAN in Aberdeen,  a wonderful place to go to for alternative treatments, I have regula reflexology which is amazinlgy relaxing. It is charity run & they only ask for a donation if you can afford it. I'm sure there must be something like this near you - get on the internet & find somewhere.

Take care,

Anne

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Hi Daffs

I thought I would let you know that I had a meeting with my oncologist today, and she was so reassuring, she went through everything so carefully, that when she asked me if I had any questions, I couldn't think of anything.  I am to start a 5 day radiotherapy treatment on Monday and my op the following Monday.  Apparently no chemo necessary.  The liver scan is normal procedure just as you said, can't tell you how much easier I feel in my mind now.  You have also given me great encouragement with your kind words.

I didn't realise all your treatment was 4 years ago.  But it's wonderful you seem to still be making progress.  I truly wish you well and thank you for taking time to reply to me.  I will let you know when all this is over and hopefully be soon on the mend.

Margaret

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So so pleased you had a goof emeeting & maybe feel more reassured. No-one wants surgery but it is the right & appropriate way to deal with this. Radiotherapy is painless & not scary but so worth while - one does lose one's dignity while the procedure happens but I wore blingy brooches that sparkled when the lights were dimmed.

Believe it or not at the end of my 5 weeks radiotherapy I wore a bridal tiara to my final session - the staff & othe rpatients all laughed & clapped!

Thank you so much for sharing this.

I've actually has cancer twice in 3 years & have just been told I'm clear, on April 22nd. This friday we are off on a much needed holiday, a 2 week cruise to Norway & Iceland.

God bless my ether companion,

Anne

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Hello to Margaret and Annie,

Happy Hols to Anne on your trip the Norway, should be lovely.  Thanks for all the info I have got from your posts.

Margaret..  I finished my chemoradiotherapy 3 wks ago now. and was told the longer you wait the better, within 3 mos. that is.  I was due an op after the initial chemo but decided to get a better 'cut' I should have the chemo radio.  I'm not really bothered, just the wait to see the scans, if the treatment has done it's job.  To reduce the tumour so the surgeon can get a clean cut all around.  Sounds good to me, whatever is good for the surgeon, is good for me, in the end.  Sound so confident, don 't I, but really have ther occasional worry that is the chemo doing it's job.  Like they say, it continues to work up to 3 mos. and the longer you wait the better.

If you are going for your op soon, I wish you all the best.  Your stage is probably different to mine.  But I do wish you success,  Godbless,  Daffs

 

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Hello Anne,

Thanks for your reassuring message. We have a Maggies Ctr at the hosp. I go  to.  I find them very good for the explanation and just to listen.  I'm signed on for reflexology now in July.  Hope it will help my tremor.  I know I just have to wait, 'what the scans will say'.  Truthfully, I'm not ready yet for an op.  Sounds odd, but I have other things at home that need sorting out before the op, so am trying to concentrate on that.  The nights are long and quiet though.

I hope you're in good health.  Take care,  Godbless   Daffs

 

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Hi Margaret,

Just wanted to know how you are now. If you're still on radiotherapy or had the op and outcome.

I had a call yesterday from hosp. for an appt. to meet with the 'team' next Tues. I will get all the info. on CT and MRI scans, what they intend to do and date. I'm hoping it will be week following. Suddenly, I'm thrown back into reality and am a bit nervous. I've recovered well from all the chemo and chemoradiotherapy to the point where I feel so well I question why am I having the op. But, of course, I know. Seems like back to the grind again.

Love to know how you are. Best wishes, Daffs

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Hi Daffs

How nice of you to enquire about me.  Well it is all behind me now.  I had the radiotherapy and quite a major operation.  I have just been discharged after spending 3 weeks in hospital.  It has been tough, a few setbacks, but now I am home recovering.  I must admit I did not expect the recovery from this operation to be so slow.  I am very lethargic and don't have very much energy.  But each day I make a little progress.  I have a stoma bag which I am getting into a pickle with,  I don't think I will get used to it.  Apparently this is going to be reversed in 6 months.

I really hope things go well for you, maybe the scans are to make sure there are no nasties left.  I really hope so.

I am to be monitored in clinic over the next few months, so I really hope nothing else will be found.

Take care, I will think of you.

Margaret

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Hi Margaret, Very glad anyway you are getting back to normal. Although it's long and rough. I can well understand about the bags. My biggest fear, almost thinking of foregoing op. I have a bad tremor which can be a violent shake if I'm in trouble doing something. As it is now, I can leave it and go back when I've calmed down. Spilt tea on the floor I just put cup down on the floor and clean up later. But... you can't do that with a bag, can you. My bag will be an ileostomy (connected to the small bowel) and moisture is not taken out by large bowel and it can leak. I have visions of going to bed with a black plastic bag wrapped around me. But that is minor compared to emptying the bag. I live alone and two best friends are away (not that I would ask them. Hosp. stoma nurse tells me but you may not need it. GP has told me Dist Nurses don't do that. I can have carer come in to do bit shoping and clean up bit but she won't help with bag. I'm at a loss, I'm sure NHS won't mind if I don't have op. Stoma Nurse has said they will be able to assist when I'm in hosp. That I do know and it's not the problem. If I can't do it at home, then I won't eat and from past experience, it could be hrs before anyone will come to assist. The Registrar agrees with me. He said they have had that problem before and it's not good. He also said I assume you're on a beater blocker for your tremor/shake. He should know I'm not from my records.

What type of bag do you have, ileostomy or colostomy. Ileostomy is not the best as your diet is different and less varied. Tends to leak. I can't get anyone at the hosp. to give me some sort of a diet so I can shop before going into hosp. They really don't help you to help yourself.

Good news is the radiotherapy did a great job and surgeon said may be able to do keyhole and all that's left is the tumor and shrunk and possibly won't need bag. Wouldn't that be a miracle. But he can only try and won't know until he gets inside. I am a worrier I know but I have to prepare for the worst that I do know about. I don't get much help from my GP although the last Dr said he would give me 10 mg diazepam I can try now. I took that some yrs ago and it did help. I can only try to remember what I took then. A bit worried too it won't work as well as before.

Well, 3 wks is long time in hosp. They said for me it will be about 7 days because of my problem. I'm sure I will be able to do it when I have nurses around me to assist, but at home alone...

I'm going to shop on line for food. What do you wear now. Do you go out yet. I must get a dress, loose fitting. I usually wear trousers. They would have to be loose too. I might get away with a long top, like shirt. I suppose I won't want to bother until a month or so after I get home from hosp. But again, I like to prepare.

Let me know what you're doing and how you're feeling and coping.

Thanks for writing. I feel for you and hope mine doesn't go on like your's did.

Godbless, Daffs