Just diagnosed

Floss07

Stage 3 n1/2 survivors experience

I am trying to understand the process of survival when diagnosed at this stage, it seems from all I have read so far that people live beyond three years but with masses of surgery and chemo, also many with private health care (not an option for me), would just like to hear from others diagnosed at this stage and knowing a little of their story. I have also been told that my CEA levels are negligible but that does not mean anything... Don't understand this.
People on here are so brave.

Hollyhock

Hi @Floss07 , I was a stage 3 N1. I went to the GP with worsening IBS and 2 days later found out I had cancer, it was a huge shock. I had surgery Dec 16 and 6 months FOLFOX on the NHS, had a scan a couple of months ago which was clear. At the time of diagnosis I was utterly terrified, I'm naturally a bit of a panicker but I have to say I hardly think about it now, it's only at scan time all the fear comes flooding back. This is a horrible time for you but I promise, once you have a clear plan of action it will get easierxxx

Terrish

Hi @Floss07 - statistics are just numbers, and as everyone says usually out of date. Don't focus on three or five year survival figures - it almost makes it seem we all drop dead after five years, when in fact it just means they tend to only follow people in these types of studies for 3 to 5 years as that is the relevant period for drug companies. There are fewer studies after that as it costs money!

My surgeon said he didn't want to see me any more once I got to 3.5 years, so I am not on anyone's survival statistic, but I am very much here. I was stage 3 in 2015. Last scan was NED - no evidence of disease. My CEA levels have always been low and therefore not a good indicator - for some people their levels never change regardless of whether they have cancer or not, but for others the levels go up with an active tumour so can be useful to show any recurrences - we are all different.

Floss07
Quote from @Hollyhock:
Hi @Floss07 , I was a stage 3 N1. I went to the GP with worsening IBS and 2 days later found out I had cancer, it was a huge shock. I had surgery Dec 16 and 6 months FOLFOX on the NHS, had a scan a couple of months ago which was clear. At the time of diagnosis I was utterly terrified, I'm naturally a bit of a panicker but I have to say I hardly think about it now, it's only at scan time all the fear comes flooding back. This is a horrible time for you but I promise, once you have a clear plan of action it will get easierxxx
Quote from @Hollyhock:
Hi @Floss07 , I was a stage 3 N1. I went to the GP with worsening IBS and 2 days later found out I had cancer, it was a huge shock. I had surgery Dec 16 and 6 months FOLFOX on the NHS, had a scan a couple of months ago which was clear. At the time of diagnosis I was utterly terrified, I'm naturally a bit of a panicker but I have to say I hardly think about it now, it's only at scan time all the fear comes flooding back. This is a horrible time for you but I promise, once you have a clear plan of action it will get easierxxx

Hi Holyhock
Thank you for your reply. I think that is where I will be. I am worried about what they are classing as an unidentifiable 3cm mass on my adrenal gland though the nurse said they thought it was benign which is slightly at odds with the radiologists report which said indeterminate. I am having another scan which is being referred to an endocrinologist. No one has said anything about any follow up chemo, and as far as I know they are planning to operate on the bowel through keyhole surgery - which I have already had quite a bit of for other things. The last time one of the wounds didn't heal and became badly infected so am anxious about this as they intend to use the same area which has scars. It was reassuring to hear that you ar clear. I seem to have only heard about people who have needed repeated surgery and chemo. How was the chemo? Any bad side effects? I hope it does get easier. - has my first really good cry today. :x:

Floss07

Thank you all, good to hear so many positive stories. You have done me good. I could not have been much lower and was contemplating no treatment and just letting things run their course. I feel a bit more positive about the op now which is scheduled for the 26 June. I have a second CT scan to loom at the mass on my adrenal gland on the 14th but don't know when I will get the result of that. I am supposed to see the consultant on the 14th June as well.

HappyAtom

@Floss07 I was Stage 3b (T3, N1, M0) and had all of my “interventions” over 11 months, and nothing since (almost two years) so nearly three years in total.. No evidence of disease since Jan 2017 op which put the tumour in the bin :)

Terrish

Hi @Floss07 - it's always such a shock at first, and I also contemplated no treatment - I had my surgery and then found out I needed chemo and at my oncology appointment I questioned everything and said i wasn't sure about the value of chemotherapy. My oncologist looked at me as if I had grown two heads - his attitude was why on earth wouldn't you give yourself the best chance of beating it?!

They won't know for sure if you need chemo until you have the tumour removed as they harvest all the local lymph nodes around the affected part of the bowel. These will be sent off for examination and if they find cancerous cells in any, they will offer you chemo.

Yes there are some side effects, hopefully you will get very few, and it varies from person to person. Some people carry on as normal, some need 2-3 days on the sofa after one drug (my fairly common regime was an infusion on day 1, tablets day 1-14, then a week off). I walked the dogs and rode my horse every day except days 1-3! They will adjust the dosage as you go. My worst days never felt any worse than having bad flu.

But never underestimate the best side effect of chemo - I am still alive after four years. They don't emphasise that side effect enough :)

Terrish

Also just to add, none of us are that brave on here at first - I started off utterly terrified, went through various roller coaster emotions, and then eventually accepted what had been thrown at me, with varying degrees of anger/bitterness/humour/resignation depending on the day.

I am now in a better place and can offer my experience and hopefully some help and comfort to others.

justhope

@Floss07 I'm glad you asked this question, I had been scouting forum for profiles of people at that stage, my husband is that stage, but early doors for treatment. I find it very encouraging to read the outcomes for most on hear, but I agree with you too. It's very humbling to read the stories I i too think everyone is courageous, brave, amazing,all those things, but I also read that it is often said being strong is the only thing you can be. :x::x::x:

Floss07

Thank you, I believe what I have read on this forum has given me the greatest confidence in the future and the ability to get there. Had a much better day today. Still learning though :x:

Karen17

Hi @Floss07. When I was first diagnosed I spent hours browsing the forum looking for other stage 3 people. My staging in 2017 was Dukes C1 T3 N2 M0. I had surgery followed by mop up chemo, and will have scans and bloods every 6 months for 3 years. So far so good ... fingers crossed! Wishing you all the best :x::x:

Hollyhock

@Floss07 , it doesn't help when other things show up on the scan. I had something in my liver which they weren't sure what it was, I had an MRI scan for a closer look and they said it didn't look like cancer so left it at that. It did give me some sleepless nights though The fact that the adrenal mass doesn't look obviously malignant is a very good sign, I'd tell you not to worry but I know that's impossible! The chemo was fine, it wasn't fun but was definitely manageable. Issues like nausea and fatigue can be helped with medication, the worst bit was having altered taste, it may sound minor but 6 months of having a grim taste in your mouth does get a bit trying after a while. The main thing is to try and through the kitchen sink at it, if there are lymph nodes affected they will probably offer chemo to you which will reduce your chance of reoccurrence. Hang in there, we are all here with you :x::x::x:

angel090

I can also testify to not panicking about other lumps and bumps. CT showed that my ovary was the size of a grapefruit and solid - so as I had rectal cancer I assumed a spread - it turned out to be completely benign. It had to be removed which meant bigger surgery but has no bearing on the cancer. Sending love :x::x:

angel090
Quote from @SH39:
Good afternoon
Sorry that you have had to join this forum.
I was diagnosed as Stage 3, last October. The staging was T3 N2. I had three months of chemo and then a week of radiotherapy. Following that I had an anterior resection on the bowel and I am now undergoing three months of mop up chemo.
When the tumour was removed, they removed 25 lymph nodes and no cancer was found in any of them although it was found in the blood vessels, hence the mop up chemo. So ultimately I was N0.
You have to try and stay positive and not dwell too much. I follow my treatment path and try to focus on the end of treatment. It is a worrying time and I do worry about the future at times, but I lead a relatively normal life; still work; I carry on.
Wishing you all the best. Any questions let me know
Simon

Hi Simon. I was T3,N0 too and start 5FU IV once weekly for 30 cycles as I also have cells in the blood vessels. You’re the only other person I’ve found so far in the same position. Do you mind me asking if you are having the same chemo and how it is going for you? I think it’s weird that a grade gives a node indication but not blood vessels as they are both carrying media. I can’t find anything about this but trying not to focus on it as like you say - the results are more important and following the plan. :x::x::x:

SH39
Quote from @angel090:
Hi Simon. I was T3,N0 too and start 5FU IV once weekly for 30 cycles as I also have cells in the blood vessels. You’re the only other person I’ve found so far in the same position. Do you mind me asking if you are having the same chemo and how it is going for you? I think it’s weird that a grade gives a node indication but not blood vessels as they are both carrying media. I can’t find anything about this but trying not to focus on it as like you say - the results are more important and following the plan.

Hi, thanks for the message.
I had three months of FOLFOX prior to surgery (neo adjuvant chemo). I am now on three months of mop up chemo. I am having FOLFOX again although the oxaliplatin may be reduced for the last three cycles due to neuropathy and the long term risks of this.
So far it’s been pretty similar to my first three months although I notice more pins and needles, but I am not sure if it’s the chemo or surgery that has caused it. It came on three months after I finished chemo and before I started the latest three months of chemo. I find that I am not overly tired and I haven’t been sick. My tastes have changed as they did before. But it’s manageable and I have been working as well on the off weeks. I have mine every two weeks.
My scans before starting treatment indicated blood vessel involvement and inflamed local lymph nodes. But once the tumour was out no lymph were affected but it was in the blood vessels. I am not sure how effective the body’s own defences are at killing cancer cells they find in the blood vessels?!
Did your initial scans show lymph node involvement?
Did you have any chemo before surgery?
I suppose if there were no cells in the blood vessels I am not sure if chemo would have been offered. But it’s belt and braces in our case and everything helps.
I still worry about recurrence or spread, but I try and get on with life and try not to worry too much.
Hope you are doing ok :x:

angepange

Hi @Floss07 , I am a 5 year and 8 month survivor of stage 3 (potential stage 4 , (which never was) with a t4 and 2 nodes. I had extended surgery, but only one op, and usual 6 month chemo. Please read my bio for all the gory details! Angie :x::x:

angel090
Quote from @SH39:
Hi, thanks for the message.
I had three months of FOLFOX prior to surgery (neo adjuvant chemo). I am now on three months of mop up chemo. I am having FOLFOX again although the oxaliplatin may be reduced for the last three cycles due to neuropathy and the long term risks of this.
So far it’s been pretty similar to my first three months although I notice more pins and needles, but I am not sure if it’s the chemo or surgery that has caused it. It came on three months after I finished chemo and before I started the latest three months of chemo. I find that I am not overly tired and I haven’t been sick. My tastes have changed as they did before. But it’s manageable and I have been working as well on the off weeks. I have mine every two weeks.
My scans before starting treatment indicated blood vessel involvement and inflamed local lymph nodes. But once the tumour was out no lymph were affected but it was in the blood vessels. I am not sure how effective the body’s own defences are at killing cancer cells they find in the blood vessels?!
Did your initial scans show lymph node involvement?
Did you have any chemo before surgery?
I suppose if there were no cells in the blood vessels I am not sure if chemo would have been offered. But it’s belt and braces in our case and everything helps.
I still worry about recurrence or spread, but I try and get on with life and try not to worry too much.
Hope you are doing ok

Hi Simon. Thanks for the reply. No, I didn’t have chemo before surgery. I was whipped in to surgery within 3 1/2 weeks so everything moved very quickly.
My scans pre op didn’t show abnormally shaped lymph nodes or blood vessels.
My chemo is milder I think just 5FU but for 30 weeks. And I am doing ok thank you :x::x::x:

EssexDan

@Floss07 . Hi.
I was T4N2 with 11 lymph nodes and emvi. I only managed 3 lots of Oxaliplatin and not capecitabine. Was meant to have 8 lots of both.
All bloods and cameras have been good news. Have a scan end of June.
Keep your chin up mate. :x:

Colin Oscar Pea

Stage 3 is eminently survivable. I was stage three with Cancer in three of seventeen lymph nodes. Op plus six months chemo and all follow ups have been fine, including CEA. Life is normal, even us old buggers can get through it.

bexly33

Hi @Floss07. It was interesting to read your post. I am just over 2 years post T3cN1M0VI and had a normal scan and CEA in March. My next scan is March 2020, miss a year then one in 2021 plus CEA bloods. It is hard to deal with, but hopefully the worry will get better. All the best. :x::x::x:

terri m

Hi @Floss07 I was stage 3c.. 4 cancer nodes out of 19. A Grade 3 cancer (poorly differientiated )plus EMVI... Its been 19 months since surgery & so far clear scans🤞 life now for me is very different. I do think about the crap returning, but then I think about our young nephew who died in his sleep at xmas time only 23 years old, with no warning😕.. Life is a gift & precious, so make each day count👍💗💝