The Good, The Bad, and The Ugly

tanstaafl

Last month I finally persuaded my wife to get a CT scan, the first since surgery last year. Nominally stage III, she’s in great shape, now trim, staying on diet, a special continuous chemo and supplements. In much better shape than even a dozen years ago. The operation last year, with a completely necrosed mesenteric invasion that had penetrated out from the sigmoid and a negative para aortic node, seems like a ghastly nightmare.

The Good
The CT center report was a clear scan. All the mesenteric invasion that had been on the pre-surgery CT, grossly visible in surgery, but had "mysteriously" necrosed before surgery, was still gone, nada. The very small nodules in the lungs were stable and one was even missing. No mention of any residual from the 1 inch para aortic lymph node (PALN) in the previous pre-op CT. The surgeon had described the PALN removed as "wrinkled and not impressive".

We've been waiting all year to exhale. Time for an overdue family daytrip to the beach. It's great.

The Bad
The CEA and CA19-9 level rose sharply in the weeks prior to the CT. A truly clear scan, seems unlikely. So time for a second reading and opinion. So I crammed to get the DVD uploaded on a slow connection the night before the beach trip. A later, quick call mentions "residua". Possible surgical residua, the damage sounds minor and controllable. 2-3 days pass (weekend) before I get to talk to the radiologist again. The para aortic lymph node, it’s still there! Twice as big (volumetrically), a walnut, not a recurrence. And adjacent, is a now visible small companion. The CT center radiologist reluctantly confirms them in writing with a terse “Addendum”.

Toto,…we aren't in Kansas anymore.

The Ugly.
A PET/CT scan confirms that the PALNs are hot, SUV>8 and SUV>4. But that’s all. On the cutesy “spinning man” animated figure, the nodes’ combined glow, midline, make this look like an alien from a sci fi movie, fusion powered. My wife has been stage IV all along. I am furious, and sickened.

johnnybegood

sorry to
hear all that bad and ugly news,sometimes i wonder if those of us who were first dx stage3 were stage4 all along...Godbless...johnnybegood

pepebcn

don't know what to say, so many news
Of course the bad & the ugly are the same problem, let us know what's onc suggestion ,but there are many ways to kick those nodes so...hope every thing goes fine. Send you my best vibes for that!

Buckwirth

tanstaafl
You mention spots on the lung, and that the PALNs were visible on previous scans. When were those taken? Did the Doctors at the time think they were benign?

Had she had a prior PET/CT?

I ask this because my Stage IV diagnoses originally involved a much closer node than the PALN, and ANY sign of activity in the lungs should indicate Stage IV.

I know you are angry, so here is the question to ask: Would treatment have differed if the original dx had been IV? Would she still have had surgery? Chemo?

IV is a shock, and means care changes from Curative to Palliative, but that does not have to mean that the care is really different.

I know this is not much help, but it does seem a long talk with your primary oncologist is in order.

tanstaafl

Buckwirth said:

tanstaafl
You mention spots on the lung, and that the PALNs were visible on previous scans. When were those taken? Did the Doctors at the time think they were benign?

Had she had a prior PET/CT?

I ask this because my Stage IV diagnoses originally involved a much closer node than the PALN, and ANY sign of activity in the lungs should indicate Stage IV.

I know you are angry, so here is the question to ask: Would treatment have differed if the original dx had been IV? Would she still have had surgery? Chemo?

IV is a shock, and means care changes from Curative to Palliative, but that does not have to mean that the care is really different.

I know this is not much help, but it does seem a long talk with your primary oncologist is in order.

III vs IV
This was the first PET/CT.

The lung thingys are so small, near limits of resolution, no one has ever (since last year) been willing to classify them as mets. The radiologist just looked through three "layers" in the PET/CT, down to the raw data, and says they're cold.

We've made some rounds, med oncs, rad oncs, surgeons, radiologist. The oncs are eager for their help, some of the surgeons not so much. The radiologist says the "walnut" is well encapsulated and no sign of anything else, head to toes, go for the surgery. Ultimately we're not adverse to a two step process, my wife was in bad shape at the start last year, wasted, -45 lbs in four weeks, and the mesenteric invasion needed to be cleared without recontamination. We're peeved because the chemo program would have had some changes, stage III vs IV, and even more technical emphasis on 1-2 points. Surgery preparation would be a slower, more careful plan, than now with rapid rises in CEA, controlled for now with a higher dosage.

I've interviewed a thoracic surgeon, and another surgery laproscopy team, that are interested. One surgery offer already, and the other will answer tomorrow. Oddly, we're still talking curative surgery for two adjacent, isolated PALNs.

Several doctors have been wowed because no other sign of mets and seedlings, so far. We've considered several options. Surgery appears to be most likely to be curative and keeps future options open in radiation on 1 (IMRT), maybe 2 (CK) lifetime exposures in an area.

idlehunters

tanstaafl said:

III vs IV
This was the first PET/CT.

The lung thingys are so small, near limits of resolution, no one has ever (since last year) been willing to classify them as mets. The radiologist just looked through three "layers" in the PET/CT, down to the raw data, and says they're cold.

We've made some rounds, med oncs, rad oncs, surgeons, radiologist. The oncs are eager for their help, some of the surgeons not so much. The radiologist says the "walnut" is well encapsulated and no sign of anything else, head to toes, go for the surgery. Ultimately we're not adverse to a two step process, my wife was in bad shape at the start last year, wasted, -45 lbs in four weeks, and the mesenteric invasion needed to be cleared without recontamination. We're peeved because the chemo program would have had some changes, stage III vs IV, and even more technical emphasis on 1-2 points. Surgery preparation would be a slower, more careful plan, than now with rapid rises in CEA, controlled for now with a higher dosage.

I've interviewed a thoracic surgeon, and another surgery laproscopy team, that are interested. One surgery offer already, and the other will answer tomorrow. Oddly, we're still talking curative surgery for two adjacent, isolated PALNs.

Several doctors have been wowed because no other sign of mets and seedlings, so far. We've considered several options. Surgery appears to be most likely to be curative and keeps future options open in radiation on 1 (IMRT), maybe 2 (CK) lifetime exposures in an area.

Hey....
How high is the CEA? Just womdering how much it jumped. What about MRI Laser (thermal ablation) Can only be done with minimal tumors....3 or less.... and 5cm or less....with no mets elsewhere...... Mayo has a great team.... they have had great success....up to 100% with this precedure.

Jennie

pepebcn

idlehunters said:

Hey....
How high is the CEA? Just womdering how much it jumped. What about MRI Laser (thermal ablation) Can only be done with minimal tumors....3 or less.... and 5cm or less....with no mets elsewhere...... Mayo has a great team.... they have had great success....up to 100% with this precedure.

Jennie

wen you talk about surgery means in lungs or Lymph
nodes?.
Hugs!

smokeyjoe

pepebcn said:

wen you talk about surgery means in lungs or Lymph
nodes?.
Hugs!

What Chemo was she on?

What Chemo was she on?

Buckwirth

tanstaafl said:

III vs IV
This was the first PET/CT.

The lung thingys are so small, near limits of resolution, no one has ever (since last year) been willing to classify them as mets. The radiologist just looked through three "layers" in the PET/CT, down to the raw data, and says they're cold.

We've made some rounds, med oncs, rad oncs, surgeons, radiologist. The oncs are eager for their help, some of the surgeons not so much. The radiologist says the "walnut" is well encapsulated and no sign of anything else, head to toes, go for the surgery. Ultimately we're not adverse to a two step process, my wife was in bad shape at the start last year, wasted, -45 lbs in four weeks, and the mesenteric invasion needed to be cleared without recontamination. We're peeved because the chemo program would have had some changes, stage III vs IV, and even more technical emphasis on 1-2 points. Surgery preparation would be a slower, more careful plan, than now with rapid rises in CEA, controlled for now with a higher dosage.

I've interviewed a thoracic surgeon, and another surgery laproscopy team, that are interested. One surgery offer already, and the other will answer tomorrow. Oddly, we're still talking curative surgery for two adjacent, isolated PALNs.

Several doctors have been wowed because no other sign of mets and seedlings, so far. We've considered several options. Surgery appears to be most likely to be curative and keeps future options open in radiation on 1 (IMRT), maybe 2 (CK) lifetime exposures in an area.

The news
Does not sound so bad.

Actually, it sounds pretty good. For the moment, I would forget about the staging process and focus on the surgery. If that can leave her NED, well, you may have to put up with the marriage thing for many years to come.


Best of luck to both of you.

Buzzard

Buckwirth said:

The news
Does not sound so bad.

Actually, it sounds pretty good. For the moment, I would forget about the staging process and focus on the surgery. If that can leave her NED, well, you may have to put up with the marriage thing for many years to come.


Best of luck to both of you.

tanstaafl.............
I have always revered your ability to talk with the highest of intellect, it shows in your care and decision making carefully thought out steps that you take and the care that you hold so precisely on that balance beam. Speaking so often as if a well oiled machine and spouting treatment verbatim to its minute' detail, and spot on with all of it. Your wife is in very good hands having you as a caregiver. My wishes are that the two of you will enjoy that freedom we all search for in this journey, if anyone will, it will be the two of you.....with all respect and love to you and your family.......Clift

pete43lost_at_sea

hi tanstaafl sorry
the missed diagnosis is a ****.
i wish it did not happen to your wife, but alas we are all human even the doctors and the nurses.
its a new game plan now, like buzz and blake said, your focus and knowledge are a real inspiration.
don't loose faith and focus despite the setback.

the book i am reading while camping is about the biology of cells and the environment.
it stresses how adaptable we humans are to our environment, including our cells.

fight the stress of the setback, vent here and just focus on loving your wife emotionally as a priority. lots of hugs. she will be feeling pretty scared i think.

of course do all your medical investigations but don't let it be more important than feeling loved. you have to stay emotionally connected all the way through this journey.

with little science behind my theory i also believe in the power of love and faith.

hugs,
pete

tanstaafl

pepebcn said:

wen you talk about surgery means in lungs or Lymph
nodes?.
Hugs!

details
Lymph nodes attached to the aorta, below the renal arteries.

The CEA has been stair stepping, it's almost 14 and the nodes are likely becoming resistant to treatment, partly size and partly selection. Time to eliminate them, completely. The large node explains some things. The treatment was designed for long term suppression of peritoneal seedlings and distant micromets, for stage III treatment up to 2-3 years. Similar to some foreign literature, with some extra ingredients.

It is a mixture of inhibitors along with the backbone oral fluoropyramidine chemo, highly dependent on immune processes and preventing angiogenesis by micromets. Because of the mesenteric mess's meltdown last year, the misclassification, and unresected node(s), we have relied as much on the nontoxic adjuvants as daily oral chemo. My wife four weeks pre-surgery, started out at 1600 mg cimetidine along with high dose non-toxics, for six weeks postsurgery until chemo was added.

Later, we reverted to 800 mg and 1200 mg cimetidine for a while. I regret the time under 1000 mg (per Life Extension Foundation), since most body sizes today are substantially larger than than the slight stature of the Japanese test population at 800 mg, ca 20 years ago.

tanstaafl

pete43lost_at_sea said:

hi tanstaafl sorry
the missed diagnosis is a ****.
i wish it did not happen to your wife, but alas we are all human even the doctors and the nurses.
its a new game plan now, like buzz and blake said, your focus and knowledge are a real inspiration.
don't loose faith and focus despite the setback.

the book i am reading while camping is about the biology of cells and the environment.
it stresses how adaptable we humans are to our environment, including our cells.

fight the stress of the setback, vent here and just focus on loving your wife emotionally as a priority. lots of hugs. she will be feeling pretty scared i think.

of course do all your medical investigations but don't let it be more important than feeling loved. you have to stay emotionally connected all the way through this journey.

with little science behind my theory i also believe in the power of love and faith.

hugs,
pete

thanx
Thanks for your thoughts, folks.

Smokey Joe, for the oral 5FU chemo program I know I've been obscure. A recent email reminds me that this can create confusion. For now, I am just going to say, part is simple, and a lot is complicated, has a lot of techie based considerations, and, well, is unAmerican (official approvals although definitely some American contributions), too.

For now, I am deciding on surgeons, hospitals, post recovery issues and our next version of chemo and nutrition, etc. This surgery is taking a life of its own. At first, it seemed like everyone was reluctant to touch it. Why not just do your chemo and radiation like everybody else? Now some are shrugging off objections, viewing this as an opportunity to address the metastasis issue. The PALN is thirteen months since diagnosis.

Life is a compromise, you pay your money and they often ask for more.

tanstaafl

pete43lost_at_sea said:

hi tanstaafl sorry
the missed diagnosis is a ****.
i wish it did not happen to your wife, but alas we are all human even the doctors and the nurses.
its a new game plan now, like buzz and blake said, your focus and knowledge are a real inspiration.
don't loose faith and focus despite the setback.

the book i am reading while camping is about the biology of cells and the environment.
it stresses how adaptable we humans are to our environment, including our cells.

fight the stress of the setback, vent here and just focus on loving your wife emotionally as a priority. lots of hugs. she will be feeling pretty scared i think.

of course do all your medical investigations but don't let it be more important than feeling loved. you have to stay emotionally connected all the way through this journey.

with little science behind my theory i also believe in the power of love and faith.

hugs,
pete

duplicate
sorry, duplicate