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Post-surgery and the shock of hearing the word "cure". And a philosophical question.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Two weeks ago, I had my fifth surgery in two years. I have a super-funky tumor type that normally never shows up in the colon (it's extremely rare under any circumstances but is usually in the uterus), and the chemos I've tried haven't worked for me at all, so surgery has been my best shot at survival. Surgeons took out one more little tumor in the abdominal cavity and did a complete hysterectomy while they were in the neighborhood. After the surgery was done, the gynecological surgeon said "This may be a cure for you". It really caught me off guard as no one has ever even suggested the possibility of a cure (this same surgeon commented that it was a treat for her to be working with me, as she normally never sees women with my tumor type 2 years post-dx; they aren't still alive at that point). Of course, she quickly followed up with a "Or it could mutate all over the place, we don't know!", so that kind of took the wind out of my sails, but still...having someone suggest that a cure is possible did give me a little burst of hope. The odd thing is that I've spent a lot of time since she said this trying to stamp out the sensation of hoping. My sister died of a weird cancer a year after dx at the age of 44, so I've been operating under the assumption that my longevity won't be great. I just wonder what other folks think...do you avoid letting this kind of hope grow, knowing that you might be proven dramatically wrong? Or do you foster it and hope (dang, that word just keeps slipping in) that things will turn out to be ok, against all odds?
Edit: Emily Dickinson said that hope is the thing with feathers, so perhaps the question to whether to pluck that bird or not!

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

My eyes welled up as I read this.....my God. What a time you are having!!!
As far as "hope"....this quote came immediately to mind.
"There's a surefire way to tell if your purpose here is over. If you're alive, it isn't."
Or something along those lines.
This Board is full of amazing stories. Why not think of yourself as one of them? :)
Big Hugs!!!!!

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

thank you! It inspired me to add one of my own, which is actually from a poem I love, tho I do tend to add my own twist to things.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Obviously, 7 years later....I still have something on my 'to do' list....*smile*

Hugs, Kathi

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

Now that is a wonderful word with so much power. Take it and run with it :)

Kim

smokeyjoe
Posts: 1428
Joined: Feb 2011

I would adhere to what Annabelle said!! :) :)

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, Ann

A shot at curative makes the world go 'round. I hope that is what happens for you.

-Craig

janie1
Posts: 753
Joined: Apr 2011

Never hurts to take out a little extra, while they're in there. I love surgery. Hang on to good thoughts.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

So glad that your surgery was successful.

Hope is a marvelous thing and should be a staple for each of us until we take that last breath. It keeps the days from being dark with the "what if's".

Hugs,

Marie who loves kitties

wolfen's picture
wolfen
Posts: 1330
Joined: Apr 2009

Without it, I would be a lot more crazed with worry than I am now.

Luv,

Wolfen

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

Congratulations on the progress. There are medical papers that show you can "carve" your way to success if the metastasis can be stopped and the surgeons motivated.

Sounds like this is an opportunity for the molecular profiling Snomintj mentioned earlier, where they use fixed pathology samples now. I think that there are two other labs. To me, instead of using expensive, often nasty, -ibs and -abs, one needs to identify natural sources, often foods, vitamins and supplements, to cover the targets identified. Presumably you have great library resources available.

Nutrition seriously counts, juicing, supplements, TCM, and "plain old diet". Especially on chemo.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

like the holiday imagery of bring "carved", as in roast beef. That's kind of how I feel after all of these surgeries! But seriously, thanks for the ideas. I doubt that I will be doing any more chemo, as the two main possibilities for me didn't work. I did use cimetidine for this last surgery and am thinking about continuing it. Was it your wife who was using that on a regular basis?

smokeyjoe
Posts: 1428
Joined: Feb 2011

When I read your post that you went for surgery my mind wondered if you did the cimetidine before and after, but I didn't want to bring it up, I am glad you brought it up. Did you run it by your doctors ahead of time?? What was their response?

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and he had never heard of it, but thought it sounded interesting and worth a try. I wasn't able to get the post-surgical IV that was used in the study, however; my doc checked on that and said it's not made anymore. So I choked down the pills three times a day. I did later learn that there is a liquid version that might be better, especially if a patient had a resection done (my surgery didn't involve the intestines this time, so I was able to eat and swallow pills a lot sooner than in previous surgeries). Do you have surgery coming up?

smokeyjoe
Posts: 1428
Joined: Feb 2011

No, I am taking cimetidine though to prevent spread of mets. I had my surgery last December....3 days before x-mas, colon and hysterectomy, 2 surgeons. But, I'm on a chemo. break right now...the day he ran the chemo. break suggestion to me I brought up to my onc. about the cimetidine, he'd never heard of it, but while sitting there with him he looked it up on his computer then gave me the prescription for it (in Canada you need a prescription for it). I had scans over a week ago...don't know the results yet...I see him next week...yikes!!!

annalexandria's picture
annalexandria
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Joined: Oct 2011

and hoping for the very best possible outcome. And there's that word "hope" again, I guess we all need it! Especially when waiting for scan results, which is the most nerve-wracking part of the whole process to me. Hugs to you!

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

My wife has taken cimetidine from about the first 24 hrs of diagnosis. Mostly 1200-1600 mg/day, with digestive support like betaine hydrochloride + pepsin, pancreatin and glutamine. Also she's using supplements as chemo adjuncts, where her 5FU chemo by itself couldn't kill tumor cells efficiently, the combo could. She was at CA19-9 positive before both surgeries. A hard lower threshold for long term cimetidine based on blood serum CA19-9 is not optimal by a longshot, it creates a common false negative for people who really could benefit greatly. More tumor tissue histological tests like both CA19-9 and CSLEX stains appear to be definitive. See Matsumoto (2002) for starters. About 70% of stage III are positive for both stains, and probably ~3/4+ of stage IV are.

annalexandria's picture
annalexandria
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Joined: Oct 2011

I'll check that out. I mentioned being tested for CA 19-9 to my doctor (CEA is not a marker that works for me) and he looked at me like it was the dumbest thing he'd ever heard of. "Not national standards", according to him.

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

Yes, typical reaction. He hasn't really been following the journals, "standards" hides a lot of important medicine. One often has to arrange things these through the labs directly or rare US doctors that know. Got to create a demand, and an expectation (e.g. people's same dumbstruck look back when the doctor doesn't know).

We order serum CA19-9 ourselves for monitoring, after the initial setup. The maximum CA19-9 serum level was likely before surgery. However, it should still be the quickest piece of info to get with any doctor's order.

It would be good to see if any commercial labs in the US, like Caris or the others can do the tissue stains (best data) and report (overexpressed or not, relative degree of overexpression).

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i do, sorry you found us, cure sounds great.

hugs,
pete

annalexandria's picture
annalexandria
Posts: 2573
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I've read many of your posts and you are truly an inspiration!

mom_2_3
Posts: 965
Joined: Nov 2008

I've found that the doctors I have come across tend to be pragmatic and very level in their responses. They don't sugarcoat things. So if one of them said to me that there was a shot at a cure, I would interpret that as being just that, a shot at a cure, and good news indeed! One of favorite quotes is from Helen Keller. "Turn your face to to sun and you cannot see the shadows." Look at the sun Anna!

I'm so glad your surgery was successful and hope you have a joyous holiday season.

Amy

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Thanks for pointing that out. The "hope" expressed by a doctor may be a little more valuable than "layman's hope". Hope you have a wonderful season as well!

lauragb
Posts: 370
Joined: Aug 2011

You don't hear doctors say the "cure" word to often. Grab it and go. When the images of negative outlook appear, give them their brief moment and then clear em out. It sounds like the doctor reflected a healthy image to you.
Sending light,
Laura

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

you and Amy pointed something out to me I hadn't considered with respect to doctors. One of the nice things about a forum like this-helps us to see things in a way we might not have otherwise considered! Happy holidays-Ann

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What wonderful words, cure and hope, I'm so glad you got to hear "Cure" and happy "hope" stayed with you even when you tried to tell it no. Even when I was told I was hopeless, and I felt hopeless, there was always this little tiny part of me that said "h@ll no, there is always hope". Hope and Cure, two beautiful words.
Winter Marie

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and I have to say you certainly don't sound "hopeless" to me! You're still here and posting, supporting other folks, seems like the definition of hope IMO.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

It's always great to hear those words. I'm still working on the cure and believe that having hope helps.
Feeling hopeless can really put oneself into the victim category which I've never seen as being helpful in the least.
-phil

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

viewing ourselves as "victims" definitely puts cancer in the driver's seat. I don't even much like referring to myself as a cancer patient, as somehow that suggests the cancer is an integral part of who I am, like "mom" or "librarian" or "crazed liberal"...I don't want to let it become a defining characteristic!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I say yay for you and cheers to hope. Love those words. Hold on to them everyday!

plh4gail

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

6 1/2 years ago, to be exact...

At 6 years ago, I started treatment on my second cancer...breast...

NED, at least so far...sigh...wish the Insurance companies would look at that...I'm 'red lined' from 2 primary site cancers...

I had a conversation with a guy trying to sell me a couch one time. After listening to me (I said 'I am finally thinking I'm staying for awhile, I'm starting to make big purchases again'), he told of his dad. He had made it thru childhood leukemia, after a very dismal prognosis. 40 years later, he lay at the end of his life, nothing more to be done. He said to his son "You know, 40 years ago, I was dead by statistics. I have looked at every day for the last 40 years as a gift. Please don't mourn my passing now."....

That was 5 years ago, and I still carry the story with me...

Hugs, Kathi

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

And yours is a good one as well! I love to hear from folks who proved their doctor's prediction wrong. May you keep doing so for many, many years.

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