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For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
I have recently been diagnosed with Rectal cancer. After asking the consultant what stage am I, was informed that it's T3N1. I was initially told I was at early stages of cancer but now believe otherwise.
Has anyone else been told that they're at T3N1?
I have been offered an extensive course of Radiotheraphy. Consultant was reluctant to give me a prognosis. Said it could go either way at this stage.
Just need to be reassured it's going to be okay!
Help is here. I was diagnosed with rectal cancer in Aug 2010 and my final status was T4N1. I say final as when I was scanned they saw no lymph nodes involved, but after the op and they removed 11 nodes and found 1 was affected.
It sounds as if you and I are fairly similar in the diagnosis, so I hope that you can take heart from my experience. I had chemo and RT for 6 weeks, then 3 months later I had the op to remove the little bugger. I had a very low down tumour but the surgeon managed to do an ultra low resection and I woke with a ileostomy. I am booked in for a reversal op on the 22nd March.
The consultants never said to me what the outlook was, and to be honest I assumed that I had chance because they never said we can't do anything. It took me a long time to get over my op, but after 3 months I was back to work part time and have been on holiday, done business abroad, and played football and go fishing.
Please feel free to read about me on my profile, and ask any questions you want to as I know somethings can be unclear or worrying.
Well done for coming onto this site and sharing, you've taken a brave step and you'll get loads of support on here.
I was originally graded at T3N1, when they operated they downgraded slightly to T2N1a (1/25). The important part of these stagings is the "N1", which makes you, like me, a Stage III and in most cases will determine your treatment, Stage IIIs usually have neo-adjuvant radio/chemo, an op and then adjuvant chemo.
As far as prognosis goes, important is that you are "M0", ie, no distant metastases and ideally G1 or G2 (well or moderately differentiated). Given that, your prognosis, like mine, should be, to quote one of my surgeons, "rosy". Not 100%, but certainly significantly more people are cured at stage III than not. The danger with rectal cancer is recurrences, but modern radio/chemo treatment has reduced those by something like 50% and a good OP by an experienced surgeon improves your chances even more.
Are they suggesting radio (how many shots?) then chemo, or a combined course? Lots of studies show that combined is better, as the chemo makes the cancer more susceptible to the radio and vice versa, particularly if you can get them to give you the tablet form, Xeloda. I had that and my tumor shrank from 3cmx1cm to 6mm dia by the time they operated.
Stage III of IV doesnt sound early at first glance, but if you realise they just recently subdivided all these stages into IIa/b, IIIa/b/c and IVa/b to reflect improved treatment and survivability, you can see that stage III (at T3N1 youre IIIb) is pretty early, with a bit of luck early enough.
It's good to know there is hope out there. I'm really glad you posted on here and you are over the worst, getting your life back.
You start to imagine the worst and think those dark thoughts.
I can't wait for the treatment to start as I feel I'll be on the road to recovery.
Will keep you posted.
Julie x x
Really glad your treatment went well. It makes you more optomistic when you hear the survivors on here.
My consultant was very cagey about telling me my prognosis. But like you said "rosy" sounds pretty positive. I'm really hoping the radiotheraphy works and then I can have the surgery.
Apparently I am having 5 days of 5 weeks of radiotherapy. Then 5-6 weeks rest. Meeting my Oncologist on Tuesday to discuss the Radiotheraphy with him.
Will keep you posted on how I get on.
Stay well and keep healthy.
Julie - hello
I had same treatment - 5 weeks of 5 days radio and chemo - was fine though laterally backside was in tatters !
They aim to operate in 6 weeks after radio ends and mins was spot on - 3 months on im in 5 sessions of i/v and tabular chemo sadly with permanet clostomy bag hich i have managed easily
Feeling ever so weary now got i/v friday the 14 days tabs week off do it all agian - scan shows im clear but i get all sorts pains which i never knw if normal or related - try not to worry !
Wish you well - my surgery was a breeze on reflection but can be daunting - keep chin up !
Hi, this is my first post! It's my husband who's got rectal cancer. After going for various tests including a colonoscopy, he was diagnosed last November. The doctor performing it gave us the news there and then (no waiting thank goodness). He believed it had been there for quite a while. My husband didn't have RT prior to his op which took place just before Christmas. That all went well via keyhole surgery when 'Bertie' was removed. He was only in hospital 3 days on enhanced recovery programme and looked really well. Results came back less than 2 weeks later. Staging etc was given as T3N2M0 (IIIc) and he was offered chemo which began 3 Feb.
Will be having his 4th cycle of chemo (Folfox) this coming Friday with another 8 left. Treatment is every other week. Roll on July!!
I had a left colonecmectomy 2009, recovered well but they have been watching things on my lungs since and now been told they are lung mets from my bowel. I am on Folfox and Oxyplatin , have just had 4th one 8 to go like your hubby. 4th and 5th day after chemo are the worst feel very spaced out and tired.
Have got tingling in hands and feet but not too bad otherwise, as you say roll on July. Am keeping positive but do have some down days.
Good luck to your hubby,
Thanks Pam! He's finding the tiredness and horrible flatulence the worse. Had quite a bit of tingling in hands and feet last week after 3rd session. He had to have his steroids adjusted the first time round as he was completely knocked off his feet. Trying not to fight it and go with the flow and listen to his body. Folfox via PICC was his choice of the 3 options offered and I sometime think he wishes he'd just gone down the oral route but then I couldn't play 'nurses'!! Getting used to removing his infusor bottle and changing the dressing. At least I don't feel helpless like I did in the beginning.
Keep feeling positive and keep in touch.
There was a post recently with a link to a story about someone who only had radiotherapy for rectal cancer, and the cancer cleared without surgery. It's not for everyone; there is only a small percentage of cases where it happens, but sometimes patients do respond so well to radiotherapy that the initial tumour actually disappears.
There is still the risk of recurrence, and of secondary tumours, so I don't want to pretend that radiotherapy is enough; it's very experimental (there are current clinical trials).
The reason for mentioning it at all, is that your consultant is reluctant to give you a prognosis because s/he really doesn't know what will happen next, and can't predict the response you will have.
Hope all goes well for you :)
Hello Julie -
My husband was just diagnosed the the same T3N1 Rectal Cancer with node involvement last week. As scary as this all is all the doctors involved are saying they are very optimistic this is curable. We met with the doctor this morning who will oversee the radiation part of his treatment and see the Oncologist this afternoon with the Chemo part of the plan. My head spins daily as we have been running in circles with all the testing and appointments the last few days. I tell myself daily this is all for a good reason as I never want to loose my husband so we will fight extra hard but still keep life as normal as possible for us. The plan right now is 6 weeks of radiation and chemo then a 6-8 week break for my husband to recover and get back on his feet then he will have his first surgery mid February 8 week re-coop period then they will do his second surgery another re-coop period and then 6 more months of chemo. I find myself rambling and I hope part of this helps put you at ease somewhat. As hard as it is try as hard as it maybe to stay positive some days will be worse than others and your entitled to that. Please keep me posted and I wish you the very best of luck and feel things will turn out fine. Best of luck! :)
My wife has been diagnosed with T3N1 at only age 31! It's very low. Doctor says. Any remove now without permanent bag. So is going to give 6 weeks chemo/radiation then 10 week gap then surgery to remove the hopefully shrunk tumour.. it's so scary.. your story sounds positive so makes me feel a little better about the whole thing
My boyfriend was diagnosed with cancer in November and he is 32. He had an operation at the start of January and has been recovering well. He has been listed as a T3N1 and we are now awaiting details for some preventative chemo sessions. It has been really tough because everything has happened so fast, but reading these posts has made me understand this stage of cancer and feel more positive about the next steps.
Hi Positive Penny
Sorry to hear about your boyfriend and yes it is sonething of whirlwind once you get on the initial treatment path, but then you have to wait for results and for the body to be strong enough to start chemo.
I had the same diagnosis as your boyfriend in 2011 and had six months of what they often call "Mop-UP chemo in 2012 and although I am much older I have a very full and active life. Chemo isn't nice, some people have side effect whilst others are well enough to work right through. His team will look after him well and monitor his progress and if he should have problems they will be able to adjust things accordingly.
If he hasn't been introduced to or given details of his Cancer Support Nurse or Key Worker ask for their contact details when he sees the oncologist to discuss chemo, hopefully he/she may be in clinic at that time. The Cancer Support Nurse or Key Worker is there to support the patient and his family/close friends through his treatment.
Some hospitals or onsite cancer support centres run short courses about understanding chemo, do ask if this is available and if so encourage him to go along. Some cancer support centres also run support groups for young adults with cancer where he would be able to meet others of a similar age at various stages of treatment.
Do stay positive Penny and encourage your boyfriend to be positive too. The positive attitude of my family and friends really helped me get through my treatment.
Here is the number of the Macmillan support line, which is available Mon to Fri 9:00am to 8:00pm where you can get all sorts of advice on treatment and fFinancial matters and also speak to a nurse. It's 0808 808 0000.
Take care, and I send you a hug.
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
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