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

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

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

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

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

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 

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.

     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 said:

Update Since Surgery on November 18 ......

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 

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