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Just returned from rectosigmoid surgeon appt..

Daniellabella
Posts: 19
Joined: May 2018

Ok, just got back from surgeon appointment. I’m not sure how I should feel about this news.....here goes:

-CT still has to be done tomorrow and pathology report still not back, however....

-surgeon tentatively puts this at stage 3. He says T3, N? (Although he’s not a radiologist he looked up hubbys scans and said he sees some lymph involvement), so far M0. (That could change after CT scan but hubby had clean lung X-ray this weekend and clean liver ultrasound 3 weeks ago).

-Surgeon says tumor is high up enough that no colostomy or ileostomy needed.

-planning on 1 month of radiation, 8 weeks off, then surgery.

.......

A few questions I thought of AFTER leaving the doctors....

1. I know a CT scan has to be done, but is it at all reassuring that the liver ultrasound and chest X-ray were ok? Or are those results worthless in this situation?

2. Also, he said lymph involvement. So is this a death sentence?

I’m so overwhelmed and not sure if I should be bawling my eyes out or celebrating he didn’t say stage 4?

SandiaBuddy's picture
SandiaBuddy
Posts: 1173
Joined: Apr 2017

Everyone's situation is different, so I can only generalize from mine, but I think you should be celebrating more than crying.  Scans, including CT scans, are notoriosuly unreliable.  Based on the CT, they thought my tumor was in a different place than it really was (which worked out well for me because less of the colon had to be removed).  Lymph node involvement will only be truly established after the surgery and biopsy.  Being stage III is not a death sentence.   There is likely a 10-50% chance of recurrence after surgery with "curative intent," and there are lots of things you can do to improve your odds.  From my perspective, the best thing to do is train for the radiation and surgery (good diet, lots of exercise, quality sleep, reduced stress), and enjoy each day to its fullest. Have a list of questions ready when you see your physicians.   Read enough to be educated but not enough to drive you mad.  I am sure others will chime in with good ideas.

abita's picture
abita
Posts: 1014
Joined: Dec 2017

what is curative intent?

SandiaBuddy's picture
SandiaBuddy
Posts: 1173
Joined: Apr 2017

Doctor speak for hoping to cure the cancer with no recurrence.

abita's picture
abita
Posts: 1014
Joined: Dec 2017

I had the mop up chemo. What are the percentages without it? And why isn't it zero percent to 50%. 

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

I was told that the odds of reoccurance increased by 15% without mop up chemo. Basically, my chances of reoccurance were 50% with it and 65% without it. To me, 50% means I'm in the same boat as everyone else. Everyone alive has an almost 50% chance of being diagnosed with cancer. 

Jan

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Focus on the positives, like no bag!. My bowel was high enough too, and reading some of the comments here it is a huge thing to not need to deal with it while on treatment plan. I had 4 of 20 lymph nodes with cancer cells when taken during my bowel resection. Now, my case is different because I had liver lesions also so for me, it was a positive that was only in 4 of 20. They expected more, especially sine my liver lesions were big. There is always hope. My prognosis was very bad when I was first diagnosed, but so many miracles along the way, and I don't want to jinx anything, but my doctors expect my post chemo scan to be good news. There is so much out there to be afraid of with this diagnosis, focusing on the positives helps the getting through each day

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Results of the scan is one thing to consider so don't just think that what you have found out is bad.  It's good that it hasn't gone to the other organs so far.  There are many stage 3's on here that have been here for a long time so rest assured that your hubby can come away with this with a great story.  So glad that you have found us but sorry you had to.  It's a hard thing to grasp but we are here to help you get through it.  Don't go on the internet though - it is very unreliable and outdated.  You can get a long more accurate accounts of people dealing with situations than the web.  Keep us informed about hubby and we will help you throughout.

Kim

Daniellabella
Posts: 19
Joined: May 2018

Thanks to each of you for the wonderful replies.

I will try to stay off the internet. Im sufficiently freaked out by the statistics I’ve seen on 5 year survival rates for stage 3 rectal cancer.

Honestly, worrying and researching the web has done more harm than good, raising my stress levels. 

Once the CT scan is in, I will report back here.

Hugs to all of you going through this!!!

 

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

Ignore them.  They don't apply to individuals.  I was assured by an oncologist that I had a maximum life expectancy of 5 years.  That was in 2007. I still have cancer, but last night I went kayaking in the moonlight and I'm recently back from a wonderful vacation in France.  Advances in medicine are ongoing, and everyone's situation is a little different.  Take this one steop at a time.

abita's picture
abita
Posts: 1014
Joined: Dec 2017

Thank you! My tumors were able to be removed, I am doing the chemo to kill hidden cells, but I still fear recurrence. It helps me to my core to hear stories like yours. Oh, and I was diagnosed as stage 4, but miraculously, my tumors were all operable. 

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

And 11 years out,  and healthy (yes, with a tumor growing, but otherwise completely normal.)  Treatment isn't easy, but it is doable, and hopefully, in 11 years you'll be encouraging others as well!

 

Twinzma
Posts: 236
Joined: Jan 2018

HA! You are not a number, you are your own person. Each person will have different outcomes. Those numbers are old and need to be taken down from the web entirely. New advances have been made since published, more will come. Those numbers include all ages and also include deaths from other causes. Don't dwell on the odds they give. You should look up the people here that have defeated the odds. Darcher, Tru and so many more are inspirations in more ways than one. Jan look at all the trouble she has had and she is still fighting strong. Focus your energy on healing not reading misinformed stats. Redirect your stress to fight fight fight. YOU ARE NOT A NUMBER remember that. 

 

Ruthmomto4's picture
Ruthmomto4
Posts: 689
Joined: May 2013

at stage 3 in 2010, went to stage 4 in 2014, just had his second liver resection 5 weeks ago. Do not look at statistics, take it one day at a time, deal with things head on and never give up! Good luck to you both!!

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

"Also, he said lymph involvement. So is this a death sentence?"

I'm 3B with three suspicious lymph nodes. I do pay attention to the survival statistics and 3A is 89%, 3B is 69% and 3c is 53% but care continues to improve and the numbers are obviously at least five years old. Lumph node involvement is potantial local spread and is much less of a problem than remote spread (stage 4). There are lots of stage 4s that do fine too. I have a relatively local friend with her husband having stage 4 with mets to the liver and it was very tricky removing the mets. The folks at Mass General did a great job removing them and he's NED now.

I do think that it's normal to be worried and you'll go through a lot of emotions through the process.

There are a few things known to help prevent recurrence and these can help with the odds of recurrence. We're all on this walk together.

Trubrit's picture
Trubrit
Posts: 5427
Joined: Jan 2013

There are some that are beating great odds.  Sure, others don't beat those odds, but lets look on the brigth side and think why not me? Why shouldn't I be the one who beats the odds. 

It is normal at the beginning to overthink everything. We have all gone throguh those 'dark thoughts' but then you come out of that dark funk and move forward in light. 

This sis something I did, that might or might not work for you.  I would go to bed each night, think of dying and my guts would knot up and I would lay awake most of the night. I was a wreck! So, I decided that I would allow myself 10 minutes of 'woe is me' where my mind and heart was filled with doom and gloom, and then I would STOP.  I even set a timer to start with. It worked (for me). 

Good luck as you move forward. We're here for you, every step of the way. 

Tru

Daniellabella
Posts: 19
Joined: May 2018

I’m feeling really down tonight.

I highly doubt my husband will do chemo/radiation.

And even if he did, I don’t think he’ll stick with it.  

He’s supposed to have a full colonoscopy next week and is now refusing, saying he won’t go because he’s “done being poked and prodded.”

I’m just feeling defeated, helpless and angry. 

Thanks for listening to my rant.

LindaK.
Posts: 503
Joined: Apr 2013

I'm sorry you're having a bad evening.  I've been there.  My husband was diagnosed in December 2012 as Stage 2 colon cancer.  He had emergency surgery to remove the tumor with a colon resection.  Oncologist we went to gave him options and statistics with and without chemo.  He even said as Stage 2 he didn't "really" need chemo.  My husband did not want to do chemo, felt he was cured after surgery.  Our daughter is a nurse and she and I felt he should do the chemo because he was only 59 at the time.  He reluctantly agreed.  I went with him to all 12 Folfox treatments and was his biggest cheerleader.  Our roles reversed then, he was always the optimist and I was usually a realist.  He did pretty good with that treatment, the oxy was removed after 3 treatments because he had a bowel obstruction.  He finished treatment in the summer of 2013.  Oncologist did not give us any follow up on what was next, even though I'd been asking for months.  I also kept asking about a PET scan and onc kept saying he didn't need it.  Fall and early winter of 2013/14 brought new and similar symptoms.  We went to all doctors, surgeon, GI doctor, oncologist - had a colonoscopy and was told to "lose weight"  Early January 2013 ended up back in ED with what they treated as extreme constipation for a week!  It was another tumor growing in his large intestine this time.  Another emergency surgery to remove it.  After follow up with oncologist he yelled to us from the hallway while he was on the phone "There's lymph nodes involved"  My husband, daughter and I just sat there staring at each other.  I said "It's time to get out of here"  When doctor finally came in, my husband said "We're going for another opintion" and dr said "I'm confident in my abilities so that doesn't bother me"  The next day we met with much bigger more hopeful cancer center.  They started him on Folfiri within a few days and ordered a PET scan.  PET scan showed the lymph nodes involved, which I think would have been found much earlier if any of his former doctors had given a darn about following up with a patient having issues only a few months out from finishing chemo.

I'm not sure where you live, but I would suggest a second opinion if that is possible for you or even go to a Cancer Center of America.  You want to work with the best team who gives you hope and positive news.  They may be able to encourage your husband to go with treatment.  It won't be a walk in the park, but many people do well after treatment and live cancer free for a long time.  Being a caregiver can be tough.  Feel free to message me if you'd like.

Linda

SandiaBuddy's picture
SandiaBuddy
Posts: 1173
Joined: Apr 2017

I understand your frustration, but the ultimate decision maker is your husband.  Maybe give him a little time to mull it over and consider the alternatives.  Can he do surgery without the chemo first?  That might be a more attractive option for him.  Also, does he read this blog?  Getting some direct information might be useful for him.  If it were me, I would have the surgery and skip the chemo.  But all of us are different.  Best of luck in dealing with all of these complex issues.

Daniellabella
Posts: 19
Joined: May 2018

Hi. The tumor is sessile and would need to be scraped, which is more dangerous.

 

The idea of surgery first is to shrink the tumor for a more successful surgery.

Daniellabella
Posts: 19
Joined: May 2018

I just found out that my husband CANCELLED his colonoscopy appointment for next week.

He’s in denial!

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

That's a rough one. You feel it's denial over fatalism? Either way, he may just need a little time to adjust, but delaying treatment is not optimal. People with his prognosis, or one's like it, have done very well with treatment, I had nodal involvement, and two liver recurrances, but I'm here and clear, over ten years after. Get him to talk or read survivor stories, here or at any number of sites, people beat this back, it is a rough road, but so is doing nothing. When it got to be too much,especially in the beginning, long walks were my best way to sort it all out, or just a long drive. Maybe try to get him out and moving, sitting in a room, never eased my mind much...................................Dave

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Annabelle41415
Posts: 6694
Joined: Feb 2009

It's difficult being a caregiver and then having your spouse cancel something that could help him decide the path he should take for treatment.  He might just need to take a breath, but he needs to get this done to be more accurate.  You might need to talk to his doctor and stress that he contact him to make this happen.  Hope he reconsiders.

Kim

Daniellabella
Posts: 19
Joined: May 2018

Hubby has fever of 39.5C (103.1 F). 

 

He will only take one Advil to suppress it.

 

Our condo is 27C (80 F) and he’s under two winter blankets, 45 mins after taking Advil.

 

He refuses to go to ER.

 

I don’t know what else to do!!!!

 

Is this a sign the cancer is metastasizing? 

Trubrit's picture
Trubrit
Posts: 5427
Joined: Jan 2013

it is a sign that something is happening, though I doubt it's a sign of metastasis. 

I'm sorry he's being so stubborn. Just keep him hydrated, or he will have no choice but to go to the ER, in an ambulance. Well, maybe that will be the best thing, if he refuses to go on his own; but dehydration can get pretty darn serious. 

Take care of yourself during all of this. Stress can be as bad a dehydration. 

Tru

Daniellabella
Posts: 19
Joined: May 2018

Does anyone know what such a fever could mean?!?!?

Its intermittent with unknown cause....no infection per blood culture or X-ray. 

Seems to come on in late afternoon every few days.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

If it continues he needs to go in as this is not something that should continue.  Temps usually rise during evening but this is too high to keep ignoring if it is persistent.  Call the doctor or the one on call if he doesn't seem to be getting better by tomorrow.  Please let us know how he is feeling.

Kim

Daniellabella
Posts: 19
Joined: May 2018

I’m feeling very discouraged.

Not only has hubby canceled the colonoscopy, but he has decided to delay radiation/chemo by 1-2 months.

He has decided to try his own CRAZY regimen of Japanese green tea, ester-c and about 15 other things I can’t recall at this moment.

I told him this decision is foolish, reckless and arrogant.

He tells me I need to “walk beside him.”  How can I support this insanity?!?!?

SandiaBuddy's picture
SandiaBuddy
Posts: 1173
Joined: Apr 2017

Every adult is entitled to make his or her own medical decisions, whether that is to receive treatment, decline it, or delay it. Those decisions may or may not hasten death, but they are his to make.  I am sure it is frustrating because his decisions are not the decisions you would make for yourself, but understand this is a complex, emotional and frightening process.  Perhaps "walking beside him" is the best thing you can do at this point in time.

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

You as a caregiver is probably the hardest as you have to watch on the sidelines what happens.  He has made his choice and although you can't agree with it you have to let him do what he wants.  It's hard to sit by and watch his decisions while you don't agree.  You can't really do anything but be there and let him know your feelings but let him make the decisions for his own future.  Please come back here to share your feelings - sounds like you need an outlet and this is the place to do it. 

Kim

Daniellabella
Posts: 19
Joined: May 2018

Thanks for the replies, everyone.

The surgeon called today....it’s Stage 3C...... T3, N2, M0.

He says they may possibly do surgery first, before chemo/radiation.  

The oncologist will make the final decision. 

My husband seems far more open to surgery than chemo/radiation.

Anyone have positive stories of survival about 3C?

PamC
Posts: 9
Joined: Jun 2018

I just finished a one-year treatment regiment for Colorectal stage IIIC. I thought death was knocking at my door. I had chemo/radiation for 8 weeks, 9-hour surgery, 8 rounds of chemo with a portable 48-hour chemo bag, and then a reversal to remove my bag. (Also had a second primary breast cancer appear during the process and had to add in a second round of radiation). During surgery, it was discovered that the cancer had broke through the wall and entered my uterus which added an unexpected hysterectomy into the mix. The process from being told I had cancer to my last post-op appointment (this week) was one year to the date. My pathology report showed clear margins with T0, N0 (were T3, N3). The road was ridiculously hard and if you asked me how I was, most days I answered miserable and tired of the process. I was always honest about how I felt and that scared people. I just didn't see the point of lying but I fought every step of the way.

SandiaBuddy's picture
SandiaBuddy
Posts: 1173
Joined: Apr 2017

From my understanding it is not possible to truly stage the cancer before the surgery and whatever they tell you in advance is just an estimate.  But perhaps my understanding is uninformed.  I think the surgery is a lot easier than the chemo, for what that is worth.  As for survival stories, I was 3b and I am doing well a year and a half after surgery.  What the future holds for me is unknown.  Be sure to communicate your desires with your doctors.  It is the patient who makes the final decision.

plsletitrain
Posts: 253
Joined: Jul 2017

I think its the biopsy that will "officially" stage him.  I did not have a choice as mine was an emergency operation so it was surgery first then chemo after.  I was stage 3B and thought I was dying soon.  I'm actually one who delayed my chemo, I was about to start around 3 weeks after surgery but I started after two months.  I did try alternative medicine and although I have faith in conventional medicine, I think we should also not discount alternative medicine.  I did that and to be honest all results were good.  I stopped and my lung nodule grew.  I've tried to research on my own and perhaps your husband is also doing the same.  Our doctors are there to guide us, but being proactive and being the ultimate decision maker should never be lost.  Sometimes we cancer patients trust our instinct. Note that not only are we subjected to physical toil, but also mental and emotional.  His decisions might still change though but the important thing is his decision is something that he's confident in.  It will help him manage his treatment.

beaumontdave's picture
beaumontdave
Posts: 1135
Joined: Aug 2013

IIIb here, 2 nodes involved, then reccurance in the liver 3 spots way apart. They dug them out, 2 1/2 years later, a mass again in my liver. Once again they dig it out, almost four years ago now, almost eleven years since diagnosis, I'm here, I'm NED, and I feel good.  Tell your hubby it's a doable path, and can/may get easier, but from where I sit now, it was worth the fight, and I lost a lot along the way. Tell him to read the stories of people who've walked the walk, and tell him your with him no matter he chooses, or what happens. And find time to be good to yourself and your needs...........................................................Dave

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