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13 years NED and a new mass ..... Feeling angry - UPDATED since surgery

Doreen65's picture
Doreen65
Posts: 52
Joined: Aug 2005

Hi all,  it's been awhile since I have visited this board and now I'm back and just as frightened as I was back in 2003..... I really hate even posting this for the ones just beginning this journey.  I've never stopped being worried for the last 13 years and now I'm dealing with this crap again.  It all started in August when I moved some heavy furniture and noticed some blood in my stool.  I immediately called my gastroenterologist and reminded them I was high risk and wanted a colonoscopy.  10/20 I had a colonoscopy and when I woke up I was told they found something suspicious looking that three biopsies were taken.  Turns out it is a mass not in the same area as my trans anal excision actually a little higher.  My surgeon is suspicious that this new mass is radiation related. Interesting.  A double edged sword.   So now I am scheduled for surgery on Friday for a LAR surgery to cut out that area of the rectum.  I am pretty worried.  I have to have a temporary ileostomy and I'm also pretty upset about that.  Anyone with any experience with that please let me know.  Just a quick brief on what I had in 2003 was stage 4 .... Rectal mass with 4 liver mets and a liver resection.... So keep me in your prayers so it begins again.  Emotions all over the place.  Doreen

I forgot to mention I had full body CT scans and full body MRI that showed no mets so that's good news but I'm just afraid they are going to want me to do chemo all over again.  What would you do???? 

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

So many of us feel, and want to be 'strong', but there are times when we need to allow ourselves to be overcome with the horror of our diagnosis. 

I am so very sorry to hear that you are back in the game.  I'm sure there are some people who can forget and move on, but I don't think its many. For me, it gets harder the longer I get from my last episode, and I'm only two years seven months out. To go 13 years and have a reoccurance, well, it must hurt so much. 

You can be sad, and angry, but then you know you have to be positive because that will carry you through. 

We're here for you, even though you pretty much know what faces you at this time. 

I can't help with the ileostomy question, but others will be along soon enough. 

TRU

kmygil
Posts: 881
Joined: Feb 2007

Hi Doreen,

I am very sad to hear about this new mass, particularly after being NED for so long after a Stage IV.  Let yourself be as angry as you please.  I would be, too.  

However, use your anger to get rid of this new crap.  If you need to do chemo, do it.  You are better informed this time, and you know "tricks of the trade" that you didn't before.  The chemo may not even be the same.  I never had an ileostomy so I cannot answer any questions about that, but if it's temporary and necessary, go with the flow.  I know it feels like starting all over.  4 months after my last chemo I was diagnosed with a brand new primary cancer, and I was plenty angry, discouraged, and feeling like I Just. Could. Not. Do. It. Again.  But we do what we have to do, yes?  I used my rage to get me through the second one, since physcially I was pretty wiped out.  

You have been healthy for 13 years, so you are taking this on in good condition, right?  You have that going and that is a HUGE plus.  You have knowledge.  You know what sort of questions to ask.  You are empowered by that knowledge.  You can do this.  Whatever you decide we are with you.  

Hugs,

Kirsten

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

   Hi Dooren,

                  I am so sad and sorry to hear your news.  I have always been warned to stay vigilant for new tumours and I have. I have had ten scopes , half of which have produced polyps. Survial has not been great for me . This january I end year 19 and satrt year twenty. Unfortunately cancer and treatment has made a mess of me. I have severe neuropathy of the feet , legs and left hand. My internal electrics are fried , I suffer over 11000 premature ventricular and atrial ectopics heart beats a day. I have congestive heart failure, type two diabetes plus I have several auto- immune diseases ranging from nephrotic syndrome of the kidneys ,psoriatic arthritis and auto immune hepatitis. I take cyclosporine twice a day just to stay alive. Would I have chemo again? No way . It would almost certainly kill me. I am due for another colooscopy now. I am booked in just waiting for a slot. I don't know what they will find as cyclosporine is a transplant grade immune suppressant. I have had skin cancers cut out due to it and methotrexate. I owe my diabetes to high dose prednisone. I was 48 when dxed with stage 3c colon cancer into six nodes. I am 66 now and our stuations are prpbably quite different. I had a bad time on chemo so I deffinitely will not be going there. You on the other hand need to decide what is best for you. I wish you well with that decision and hope that it all works out for you, hugs Ron.

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

I feel your pain.  I was NED for 9 years, and my recurrence was found in August.  I've had surgery and Intraperitoneal chemo, and am still recovering.  I was convinced it was done with.  And now I'm back in recovery mode, and know that there remain some malignant cells.

Wishing you the best.  Ask questions and decide what you want regarding treatment.  I know that a particular radiation treatment (brachytherapy) might kill off the remaining cancer cells, but the collateral damage could severely impact my quality of life.  Since mine is a slow-growing tumor, I'm likely opting out, and will be doing watchful waiting.  You need to do what is comfortable and right for you; not for anyone else.

Alice

beaumontdave's picture
beaumontdave
Posts: 978
Joined: Aug 2013

Sorry for your return to battle, 13 years would have me believing I'd won the war. The radiation comment is interesting, I want so badly to be able to stretch my scan intervals beyond the 3 months I've been doing for nine years, because of the accumulation of total radiation received. I know I'll never get past that possibility. Calling myself cured at any point now will just be a mood booster, more than a truth I hold. Managing expectations is a reality for all of us, I hope they clear this up for you and you can get back to counting the days of NED...................................Dave

 

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

Ham is cured we are NED. 

I know I will never be cured. I don't want to even have that word come out of my mouth. I am quite happy to believe that I can be NED for 9 (Abrub), 13 (Doreen), or 30 (dreaming) years. 

TRU

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Thanks for the ha-ha's!!

There's no reason not to think positive (or is that "negative"?), it does happen, ya'know!

"PhillieG" once said: "Cancer won't kill you if you die of something else first".....

And that's my plan: Self inflicted overdose of Cannolli. I seriously can't think of a better way. Sex, years back maybe, but at 72... in -my- condition?

If a street walker offers "super sex ?", I opt for the soup....

Thanks for the morning laugh Darlin' !

Be well!

John

 

ellend
Posts: 80
Joined: Apr 2016

I'd be mad too if a mass showed up after 13 years of being NED. I am currently NED, but it's only been a few months. I hate to see people who have been many years NED having to go through this again. I think the chemo has to be your decision, everyone reacts to the treatment differently. I had a relatively easy time of it, but still got the "typical" annoying side effects - extreme sensitivity to cold, neuropathy in hands and feet, minor nausea, jaw pain on chewing, minor hair loss. They had to discontinue leucovorin and 5-FU infusion because my platelet count dropped too low. I still got the Oxaliplatin and pump.

I have a temporary iliostomy. I need to recover from chemo before it can be reversed, especially my platelet count. Due to my schedule, it will probably be the end of January before I can get it done. I have times where the wafer/bag needs to be changed daily or even 2x per day and others where it lasts for almost a week. If you start to feel burning around the stoma, that is probably an indication that it is leaking and needs to be changed. Don't let it go too long, the output will damage your skin and make it even more difficult to get a good seal because the wafers don't stick to the skin barrier as well as it sticks to your skin. Hopefully, they will get you training with an ostomy nurse. They will get you free samples to try different products to see what works best for you.

There are ostomy support sites that can help you manage this and give you advice about how to manage the ostomy.

I wish you all the best.

Ellen

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

...and that is why I use the term being in remission.

Big hugs I can understand how angry you must feel, after 13 years of Ned it comes back. Only you can decided about how you want to go further with treatment etc. Just know you will have family, friends and this board who are behind you. 

You haven't posted since the 16th it would be good to know how you are?

Hugs x

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm sorry I somehow missed this post. I'd be angry, too, if I were you Doreen. Every time something comes up, even if its minor I get angry. It's like 'Really Isn't it someone else's turn? Enough already!'. Not that I'd wish this crap on anyone else but there are so many healthy people out there and it seems like enough is enough.

I'd be concerned about the chemo, too. I'm not sure that it's worth it. Surgery is the first and best attack on cancer. Anything else is secondary and harmful.

I'm sorry you're dealing with this now. You must have felt like you were out of the woods. What an emotional blow to have it rear it's ugly head again.

Hugs,

Jan 

Colonchick's picture
Colonchick
Posts: 36
Joined: Nov 2016

I haven't gotten over being angry from my 2 primary cancers let alone the fact that I could have a recurrence! I'm truly sorry and hope that you take on the fight again. It's the competitive spirit in me!

LauraCF
Posts: 27
Joined: Nov 2016

Doreen,

I'm really sorry to hear of your recurrence.  That must be such an awful blow.

I don't have cancer myself, but am a caregiver to my long term partner, who has stage 4 colorectal cancer with one metastasis to the sacrum.  His original rectal surgery required an ileostomy that was supposed to be temporary but now is permanent due to the discovery of the sacral tumour.

In our journey we discovered that an ileostomy puts you at risk of dehydtation and electrolyte balance if you are not vigilant about making sure to hydrate and moitor your output.  We discovered this the hard way.  You must make sure that you are properly trained to recognize when your output is too liquid, as this is the only real way to know if you are in danger. My partner ended up in the hospital for three weeks as the result of not understanding that he was dangerously dehydrated.  Now he takes Immodium any time he thinks his output is too liquid.  Works like a charm.

 

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

A temporary ostomy is okay.  I got stuck with a permanent colostomy.  Temporary is what you want.  Make sure that they are CLEAR that it will be temporary.  I woke up to a permanent one and was not prepared for that at all.  Find out if there is any risk of it being permanent.  I know that a colostomy is a lot better than an ileostomy from talking to so many.  But termporary is okay, you'll be okay.  It hurts while you're in it and then you go through the difficult recovery but then it's over.   If it's radiation related then it's not cancer and that's a great thing.  It's annoying as hell but it's not cancer so okay, you get this stupid mass out and get back to living and if anything else shows up, you go in swinging!  I mean you give it your all, you beat it once, you're going to beat it again.  The anxiety during cancer or anything related to it is just so unreal, it's hard to imagine that that level of anxiety exists until you're living it.  And your'e not alone.  I'm at year 5 and every bump, lump and weird thing "could be cancer".  I don't let it get into my soul these days but it's in the back of my mind when something weird goes wrong.  I recently had a very thick bump on my cheek and I started looking at what cancer looks like on the cheek.  Turns out it was an irritation and I'm probably biting my cheek while I sleep as I got a new implant recently in a space that had been empty for a long while and my mouth is adjusting.  There are thousands of things that could be wrong aside from cancer.  I don't think it ever really goes away.  We just learn to push it to the back of our minds most days and keep on hoping.  

Doreen65's picture
Doreen65
Posts: 52
Joined: Aug 2005

Well I'm here to tell you what has happened since I was rediagnosed with this lovely stuff.  I had surgery on November 18th at the University of Penn LAR surgery.  Surgery went well and I do have a temporary ileostomy.  I have to tell you maybe I'm just tough but the surgery was a piece of cake to me.  I was told it was a five hour surgery but I was up and walking the halls the next day and discharged on the morning of day four.  As terrified as I was to have this ileostomy I have made so many jokes about it and its really not that bad LOL.... I kinda like not running to the bathroom to poop LOL... Surgeon told my husband mass was removed, clean margins and 13 lymph nodes were removed.  I was so nervous to go for my follow up visit three weeks after surgery I was anticipating bad news.  The great news is no lymph node involvement.  Here is how my pathology report reads......

Final Diagnosis:  Invasive adenocarcinoma, moderately differentiated, 2.7cm, rectum, invades through muscularis propria into subserosal adipose tissue

Lymphovascular invasion is present 

Proximal colonic, distal rectal, and radial margins, negative for malignancy

Thirteen lymph nodes, no tumor seen 

Now my surgeon is a little puzzled ..... As she put it I have dodged the bullet twice.  My report is calling this recurrent rectal cancer.  But is it really ..... I wonder.... Do you think cancer cells can be in your body that long and just show up again in just that one spot.  She was certain that my lymph nodes would be positive.  She knows how I was feeling about doing chemo again and she seems like she is going to be concerned if I don't.  She wants me to have a consultation with an oncology specialist at Penn.  What are your thoughts on this.... Because the way I feel is that chemo isn't necessary.  So for now without chemo I will have my reversal surgery mid Feb.... and go through a recovery period all over again.  I'd love to hear your thoughts on any of this....... Doreen 

Joan M's picture
Joan M
Posts: 366
Joined: Oct 2016

Doreen,

My sister in law had thyroid cancer 19 years ago.  They did surgery - removed her thyroid.  They said she didn't need chemo at that time.  She was cancer free for 19 years.  She thought she had beat it, but was diagnosed with metastasized thyroid cancer last spring.  The doctor told her that it was probably a recurrence of the cancer she had all those years ago.  She had radiation this time but is not expected to make it this time.  The chemo is supposed to help your body get rid of any rogue cells.  If your doctors are recommending it, I would probably do so.

Wish you the best of luck,

Joan

Trubrit's picture
Trubrit
Posts: 4784
Joined: Jan 2013

Sorry you had to go throguh it all over again, but it is good news to have so many lymph nodes come back negative. 

I wish you well in your next surgery. And I wish you well in your decision concerning chemo. 

TRU

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

     I would have been sceptical about it being a recurrence to be honest. My surgeon gave me the all clear at seven years( he had only expected me to survive three)  He said that I was cured of that tumour but he left me in no doubt that I would see others. He said quite a few things have to go wrong to develop a cancer but he said that once you have fulfilled the criteria once , you are in the zone and unless I remain vigilant there will be others. This jan 22nd will be the end of my 19 th year cancer free. At my last colonoscopy I suggested that they just lay down a track and park the camera up there somewhere ,save some time. I am glad there is no involvement in the nodes. In one of my scopes my gi found two small 2 mm polyps that had signs of displaysia. She suggested I had dodged a bullet. All the best for a speedy recovery. Ps No more chemo for me. The last lot nearly killed me and left me with permanent auto-immune nephrotic syndrome of the kidneys. Cyclosporine is the only thing keeping me alive, Ron.

Doreen65's picture
Doreen65
Posts: 52
Joined: Aug 2005

I am very curious to go have this consultation with the oncologist it's funny how it's different the second time around.  I'm nervous but I know most of the terminology and am prepared to ask my list of question.  I have been reading and everything I am reading says basically because in caught this when I did chemo is not necessary.  In fact some articles I have read says it could make matters worse because of the toxicity.  

Colonchick's picture
Colonchick
Posts: 36
Joined: Nov 2016

I'm very happy that the surgery went well...I hope all goes well with the chemo decision too!!

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

    That would be my take on it. My oncologist would need to have some gold plated reasons for me to have chemo if I were in your situation. And then he would have to fight my nephrologist to make it happen.  my neph has vetoed me having any sort of operation at all unless it is 100% life threatening. I am probably in a slightly different situation to you. One of my chemo drugs was levamisole. It was banned in 2001 a few years after I had it for often fatal side effects. It has left me with a raft of auto immune problems including mild to moderate auto immune hepatitis as well as auto immune neuropathy from the hips down. It will be very interesting to hear what your onc suggests given that you have no sign of any lymphatic involvement or mets. I would not be game to have chemo again. I sometimes find it hard to understand medical mindset. Here I am almost at the end of year nineteen but not once in all of that time has any medical entity bothered to try to find out why I am still alive or what long term side effects have occured from cancer or treatment. If you are like me you try to look at all the facts and figures in situations like this and make an informed choice backed up by your gut feeling. I believe it should be your choice . A bit of luck never goes astray and I wish you loads of that, Hugs ron.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Doreen, I'm sorry you had to have the surgery but I'm glad it went so well. I also enjoy not pooping! I had IBS as long as I can remember and not being ruled by it is very freeing. I hated my illeostomy for a long time but now that I can have it reversed I don't think I will. It's a small price to pay for not having to be close to a bathroom at all times or having the embarassment of having to go in a public bathroom and worrying about sounds and smells. Or the pain of having to go but not being near a bathroom. It would often get so bad I'd feel like I was going to faint.

Anyway, as for the chemo, I'd be very hesitant, too. The surgery is the best treatment we have. Chemo is way behind. And it does so much damage I'm not sure it's worth it unless there's a situation where it's required. But this mop up, just in case chemo is questionable as to it's value and if it actually is better than the damage it does.

I wish you the best in your decision. John posted an explanation about chemo not long ago and it was very eye opening.

Jan 

danker's picture
danker
Posts: 1179
Joined: Apr 2012

Since I had Chemo & Radiation prior to resection, Surgeon vetoed any more Chemo. Received iliostomy at time of resection.  Six weeks later Ileo reversed. Developed fistula at stoma site.  More time with bag!  Fistula healed itself from inside out.  Been NED ever since, over 6 years.Smile

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

It took 13 years to come back - it sounds like your tumor type is very slow growing (as is mine.)  Chemo isn't as effective on slow-growing cancers.  Plus there are quality of life issues.  And who knows what new options may be available if it comes back in 10+ years.  My dr knew I wouldn't consider more systemic chemo.  We discussed possible brachytherapy because we know where the rogue cells are, but decided against that as well.  Again, quality of life, with no certainty that it would be helpful.  (Plus if it didn't work, my next surgery would be even MORE difficult, if not impossible.)

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