mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Asterix]

I saw my surgeon today and he wants to remove the cancerous lymph nodes. So I am booked for surgery next Thursday. If all goes well I'll only be in hospital one night and only a few weeks off work. I saw my oncologist afterwards as he wanted to know the outcome, and he said it was his happy news for the day hearing I could have the surgery. Kind of made my day too.

[skypup]

Asterix, that is great news! Is it Thursday of next week or this week?

[Asterix]

Next week - 30 May. The surgeon told me the hard part is making sure he gets the correct nodes. He rang me back after reviewing the scans with the radiologists and he said one node will be easy to identify, the other is difficult so will need a hook wire put in before the surgery. This is a CT guided procedure where they place a wire (using a needle) into the lymph node and leave it coming out of the body. The surgeon then uses that to locate the correct node - the one with the wire sticking out of it. He said they will also take a few nodes surrounding the affected ones so they can be examined as well. I've sent the surgeon an email wondering if seeding is a concern, similar to when doing a biopsy. Has anyone had a hook wire done and any thoughts regarding seeding?

[kiwiinoz]

Asterix
Awesome news and I am very happy for you
Best wishes for the 30th and let us all know how you go with the recovery
Kiwi

[Asterix]

Thanks Kiwi. Hope you're going ok with the FOLFOX.

[janeandrea]

Dear Kzinti -

Wow, you've had a hell of a year, haven't you? I'm so very sorry for all you've gone through - and with all of that hard stuff on TOP of the cancer. That kind of thing is so difficult under the best of circumstances; I mean, way up on the stress scale. And you did it all while being newly diagnosed with Stage IV cancer. Bravo and applause. And then a hug.

While the reason sucks, I am glad that you found this forum, and this thread. Safe safe safe here.

Peace,
Jane

[annalexandria]

Hi Asterix-
if it was me, I would throw some cimetidine into the mix if you're concerned about the seeding issue. No guarantees, of course, but there are some studies that show much better outcome for folks who take this OTC medication for a week before and a week after surgery. It apparently has some ability to limit the spread of cancerous cells during surgery. I've had surgery five times, and took cimetidine for the last one. May just be a coincidence, but I haven't had any further mets, and that was about 17 months ago. To me, it's one of those "can't hurt, might help" things.
Good luck! Ann Alexandria
PS If you search on cimetidine or tagamet (brand name) on the forum, you should find a couple of threads with some discussion about this topic.

[skypup]

Dang. Mixed bag on my scan results. The lymph node situation seems to be getting better--the ones identifiable on CT continue to decrease in size and my CEA continues to decrease. I have three new small hypodense lesions (one is 7mm, two are too small to measure) on my liver. Have had several that have been stable for all five years, but these are new and so are of concern. My first order of business is to make sure I get approved for the trial drug next week, then I will consider a PET to take a better look. Wish we could all hop off this stupid ride. Dang.

All that dang'ing aside, I do feel grateful that I have managed two years without chemo and am still in a pretty good position. And I've never had illusions about the game I woke up and found myself in, just want to play this hand out as well as I can.

Thanks for being here... It's really sad, but there is absolutely no one to tell this news to. The people that love me don't want to hear it, and the people that don't love me, I don't want to talk to about it. Crazy lonely island, this cancer life. When we pass, the common thing is to say, "She was so brave, so strong." Try brave, strong and lonely.

[vickitwo]

Skypup---I am interested in your news and am rooting for you.

[kiwiinoz]

Skypup
That is what this forum is for in my opinion, a place to talk about things you can't or don't want to with others
Must have been hard to get that news and have nobody you could share with and appreciate that you shared with us
Kiwi

[tawni's mom]

Sorry for the mixed news, Skypup.

On the other hand I know how you feel about who to tell things to. Although I love my husband and he loves me, this cancer thing is not something we openly discuss. I mean, he drives me to chemo every 2 weeks & is here while I am on the 48 hr pump, so he is involved with that aspect of this. He also knows rthe severity & treatment plans. But, just because the whole thing is eventually a grim outlook, we just don't discuss the ending of the story. At least not for now. We are just keeping hope that eventually I may be worthy of liver resection & main tumor removal... eventually.

As for friends, I have 2 close to me. The small handful of others... ergh. Even family members... ergh. The 2 friends that are close only see the good natured side of me who jokes constantly about the side effects & their annoyances. Both say how they admire my spirit & strength, but deep inside they don't see the fear that lingers. The only one who really sees the true feelings & fear is my little dog.

Why I don't share my true self, I don't know. Maybe I just don't want to be judged or looked at like I am a contagious leper. Or maybe because I get so tired of hearing about everyone else whining because they are having a bad day? They really don't know the true meaning of having a bad day unless they have cancer, which they don't. Guess it is easier to just keep crap bottled up inside and stay out of the dramatic lifestyle. Cancer definitely puts you in a lonely state of being, one that only other cancer patients can understand.

[juliej]

Skypup, good news about the lymph nodes and CEA! Of course, the new hypodense lesions on your liver are worrisome, but they might just be cysts or hemangiomas. As you metioned, a PET would help clear things up.

You're right - life as a cancer patient can be "a crazy lonely island," especially life as a Stage IV patient. I had trouble at the beginning relating to early stage survivors. They posted their end of chemo dates and subsequent celebrations, and I envied them while truly wishing them the very best. Sometimes I even find it hard to relate to Stage IV patients who are older - after all, I tell myself, they had the chance to get married, have years of marriage with their spouse, raise children, advance in their careers, move into their dream house, etc., before diagnosis. My life feels so interrupted.

Even most cancer advertising is oriented towards the earlier stages - how, with the right treatment, you can "beat" cancer. Mets patients are simply ignored. It's that win/lose aspect in our culture that irritates me. Catch it early=win; catch it late=lose. So Stage IV patients who need the most support don't get any. They tell us all about DNRs, medical power of attorney, etc., but no one ever addresses the real questions: How do you live your life knowing that it's going to be prematurely or dramatically shortened? How do you create a healthy mindset to do that?

[annalexandria]

Skypup....sorry the news was mixed, as you say. Seems like that's the way it goes at stage 4. Nothing ever seems to be straightforward. I'm hoping that the liver spots are something other than cancer. I've had a number of spots that looked worrisome and turned out to be nothing (of course, I've had those spots that looked like a problem and turned out to BE a problem, so I'm not discounting your fears in any way). Hopefully you can get a PET soon and get a little more info. Hugs and strength to keep marching on! AA

[jerun]

Hi Skypup,
I want to hear your news too! I know what you mean about the lonely part... it's so strange to have these feelings of loneliness with so many people here that care about me... they just don't get the hell we are going thru....that's why I am so thankful for this forum and especially this thread...where I don't feel alone. We all get it here...or should I say we all GOT it here?
I am very impressed with your being off chemo for almost 2 years. I have been off chemo for 5 months now and nervous about my upcoming PET scan next Friday. I had a CT scan last month and it showed my latest tumor in my sacrum was slightly smaller (still large @ 4x5 cm) and my CEA is still high but went down (only 1 pt) on the last test ...I will have a CEA test next week too. It has been increasing since Dec every test except the last one... so I am curious to see where that's at. I had 3 weeks of radiation to my sacrum in Feb/March. We are hoping that is working. My onc knows how I feel about quality of life and chemo and I am pretty much down to Iri/Avastin and Xeloda for chemo.. it was very strange that my latest sacral recurrence grew in an area that had already been radiated with my 1st tumor. I can't help but wonder if something happened during my biopsy of the original tumor in my sacrum the previous year that may have caused the new one... Who knows???
"Dang" cancer.
I hope you can stay in your trial...and thanks for your input on this forum...
All the best to you,
Jeri

[Asterix]

Hi Skypup,
I'm sorry you have no-one to share the news with. I don't know how I would cope without my wife and family. Hopefully telling us helps. And I hope the liver spots turn out to be nothing.