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Support for families dealing with cancer and other serious illnesses (Part II)

Started by Angela Wright · · 👁 14 views · 3.6K replies

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Participants Angela WrightTaylor Jackson14Edward Grant3stormytinker4restlessowl3Rachel Wood27silvercanyon7goldencrane3neonheron32Gregory Stewart4Brandon Lopez6copperbison4driftingsurfer14feralsurfer72Sandra Carter50Linda Patel21Maria Hughes67Nicholas MyersLisa Lopez75Bradley Scott2Kyle Lee7velvetmoose9Nancy Leemelloworca6 …
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3601 ·
Pathology Report:
Clinical Diagnosis
Sigmoid colon mass
Description
Multiple small tissue fragments; histology shows colonic mucosa and tumor tissue.
Diagnosis: Adenocarcinoma.

Pre-op Blood Work:
CBC
(K) WBC 4.9 (Ref: 3.4 - 9.7)
(K) RBC 5.33 (Ref: 4.34 - 5.72)
(K) Hemoglobin 159 g/L (Ref: 138 - 175)
(K) Hematocrit 0.465 L/L (Ref: 0.415 - 0.53)
(K) MCV 87.1 fL (Ref: 83.0 - 97.2)
(K) MCH 29.9 pg (Ref: 27.4 - 33.9)
(K) MCHC 343 g/L (Ref: 320 - 345)
(K) RDW-CV 13.5 % (Ref: 9.0 - 15.0)
(K) Platelets 279 (Ref: 158 - 424)
(K) MPV 8.0 fL (Ref: 6.8 - 10.4)
Differential - Absolute
(K) Neutrophils 2.88 (Ref: 2.06 - 6.49)
(K) Lymphocytes 1.49 (Ref: 1.19 - 3.35)
(K) Monocytes 0.29 (Ref: 0.12 - 0.84)
(K) Eosinophils 0.06 (Ref: 0 - 0.43)
(K) Basophils 0.04 (Ref: 0 - 0.06)
(K) LUC 0.08 (Ref: up to 0.4)
Differential - Percentage
(K) Neutrophils 59.4% (Ref: 44 - 72)
(K) Lymphocytes 30.6% (Ref: 20 - 46)
(K) Monocytes 6.0% (Ref: 2 - 12)
(K) Eosinophils 1.3% (Ref: 0 - 7)
(K) Basophils 0.9% (Ref: 0 - 1)
(K) LUC 1.7% (Ref: up to 4)

METABOLITES AND SUBSTRATES
Result | Unit | Reference Interval | Flag
(S) Glucose 5.6 mmol/L (Ref: 4.4 - 6.4)
(S) Total Bilirubin 14 μmol/L (Ref: 3 - 20)
(S) Urea 4.9 mmol/L (Ref: 2.8 - 8.3)
(S) Creatinine 119 H μmol/L (Ref: 64 - 104)
Estimated Glomerular Filtration Rate
(eGFR)-CKD-EPI
55 L mL/min/1.73m2 (Ref: > 60)

(S) Uric Acid 363 μmol/L (Ref: 182 - 403)
(S) C-reactive protein 7.2 H mg/L (Ref: < 5.0)

LIPIDS AND LIPOPROTEINS
Result | Unit | Reference Interval | Flag
(S) Cholesterol 4.3 mmol/L (Recommended < 5.0)
(S) HDL-cholesterol 1.4 mmol/L (Recommended > 1.0)
(S) LDL-cholesterol 2.4 mmol/L - for very high
risk < 1.4
- for high risk
< 1.8
- for moderate
risk < 2.6
- for low risk
< 3.0
(S) Triglycerides 1.2 mmol/L (Recommended < 1.7)

ENZYMES AND PROTEINS
Result | Unit | Reference Interval | Flag
(S) Aspartate aminotransferase 25 U/L (Ref: 11 - 38)
(S) Alanine aminotransferase 22 U/L (Ref: 12 - 48)
(S) Gamma-glutamyltransferase 30 U/L (Ref: 11 - 55)
(S) Alkaline phosphatase 84 U/L (Ref: 60 - 142)
(S) Creatine kinase 135 U/L (Ref: < 177)
(S) Lactate dehydrogenase 165 U/L (Ref: < 241)
(S) Alpha-amylase 43 U/L (Ref: 23 - 91)

ELECTROLYTES
Result | Unit | Reference Interval | Flag
(S) Sodium 141 mmol/L (Ref: 137 - 146)
(S) Potassium 4.1 mmol/L (Ref: 3.9 - 5.1)

PROTEIN ELECTROPHORESIS
Result | Unit | Reference Interval
(S) Total protein 72 g/L (Ref: 66 - 81)
ELF - Albumin 58.3 % (Ref: 56 - 66)
ELF - Alpha 1 globulin 5.2 H % (Ref: 3 - 5)
ELF - Alpha 2 globulin 10.3 % (Ref: 7 - 12)
ELF - Beta globulin 12.3 % (Ref: 8 - 13)
ELF - Gamma globulin 13.9 % (Ref: 11 - 19)
ELF - Albumin 42.0 g/L (Ref: 40.2 - 47.6)
ELF - Alpha 1 globulin 3.7 H g/L (Ref: 2.1 - 3.5)
ELF - Alpha 2 globulin 7.4 g/L (Ref: 5.1 - 8.5)
ELF - Beta globulin 8.9 g/L (Ref: 6.0 - 9.4)
ELF - Gamma globulin 10.0 g/L (Ref: 8.0 - 13.5)
ELF - Albumin/globulin 1.4

TUMOR MARKERS
Result | Unit | Reference Interval | Flag
(S) CEA < 1.7 ng/mL (Ref: up to 5.0) Method: Abbott CMIA
(S) CA 19-9 < 2.06 U/mL (Ref: up to 37.00) Method: Abbott CMIA
(S) Alpha-fetoprotein 5.65 ng/mL (Ref: up to 8.78) Method: Abbott CMIA
(S) PSA, total 0.74 ng/mL (Ref: up to 4.00) Method: Abbott CMIA
(S) NSE 23.7 H ng/ml (Ref: < 16.3) Method: Roche ECLIA
(S) CYFRA 21-1 1.6 ng/ml (Ref: < 3.3) Method: Roche ECLIA
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3602 ·
Got my CT results back today too.

Metabolites and Substrates
Test Result Unit Reference Interval
S - UREA 7.2 mmol/L ( 2.8 - 8.3 )
S - CREATININ 105 H umol/L ( 64 - 104 )
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3603 ·
I’m not sure if they’re usually this vague during colonoscopies—just giving a "type ca" diagnosis without actually specifying the malignancy grade or whether certain mutations are present.
My guess is that once the CT scan results come back, they'll finally have enough intel to make some actual decisions about the next steps.

Sent from my Samsung Galaxy using Reddit
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3604 ·
Does anyone know what an elevated NSE might actually mean? Could it be pointing toward cancer?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3605 ·
Susan Sanders59 said:Does anyone know what an elevated NSE might mean? Could it point toward cancer?

Check this out—Breyer has a solid breakdown on it here:
https://breyer.com/search/all-searches/nse
So, look, an elevated level doesn't automatically scream cancer. However, if we're talking about metastasis, you'd expect markers like CEA and CA 19-9—which pick up those high concentrations of molecules released by colorectal cancer during spread—to be elevated as well.

Sent from my iPhone using Reddit
Maria Collins33 Maria Collins33 Newcomer
2 messages
joined Feb 2023
#3606 ·
Susan Sanders59 said:Does anyone know what an elevated NSE might mean? Could it point toward cancer?

A CT scan should give you a much clearer picture regarding whether anything is actually there, plus where it is and how big it is.

High creatinine isn't usually a huge deal. As for the NSE, it's explained, but honestly, most lab results can drift a little—like, say, by about 10%—and still be considered within the realm of normal.
Cancer is such a complicated beast; don't get too bogged down in the raw data. That’s what oncologists are trained for. It's never as simple as just one number. For now, just take a deep breath. Focus on reading legitimate medical papers or articles (skip the alternative stuff) about nutrition, lifestyle changes, and how to help someone stay mentally strong. Even the stage isn't everything; you see people beat Stage 3, and you see others struggle even at Stage 1. Ideally, you always want it to be Stage 1, but life isn't always predictable.
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3607 ·
Angela Wright and Maria Collins33, thank you both for the replies and the kind words. It really helps.

The CT scans look great—no signs of metastasis so far.

He’s scheduled for laparoscopic surgery this Tuesday. Once we get the biopsy results from the removed section, the doctors will decide if any mild chemotherapy is necessary. For now, the medical board isn't recommending it.

Everything is holding steady for the moment. He’s feeling good and staying incredibly positive... Let's just hope it stays that way.
Maria Collins33 Maria Collins33 Newcomer
2 messages
joined Feb 2023
#3608 ·
Susan Sanders59 said:The CT scans look great—no signs of metastasis so far.

He’s scheduled for laparoscopic surgery this Tuesday. Once they get the biopsy results back from the section they're removing, they'll decide if any light chemotherapy is needed. For now, the medical board isn't recommending it.

Everything is steady for the moment. He's feeling good and staying really positive... Let's just hope it stays that way.

The big thing is there are no metastases.👍 I’d guess they won't know the exact stage until those samples come back. It feels a bit early to call it. Oncologists usually determine whether to go straight to surgery or try something else first based on the specific data. It all depends on the situation.

Feel free to ask the medical board or the oncologist to clarify things in plain English—just two or three simple sentences—either while the patient is there or just with a close family member. Most of the time, they’re pretty helpful. If they aren't, just calmly say, "I'm not quite following, could you explain that again?" No need to raise your voice or take up too much of their time; you aren't trying to do their job, just understand it.

Usually, once news drops, people immediately start asking how many days are left or spiraling into worst-case scenarios. That often leads to frantic supplement shopping or endless Googling.
Hope doesn't actually cure the illness; it helps the mental state. Support from loved ones, boosting the immune system, eating right, changing habits, and actually following the doctor's orders—that's what matters. It’s also not a bad idea to chat with other patients to see what worked for them and what didn't.
Maria Collins33 Maria Collins33 Newcomer
2 messages
joined Feb 2023
#3609 ·
To kick off Colorectal Cancer Awareness Month, the Department of Health and Human Services announced that family doctors will be rolling out a new early detection initiative in their offices.

Basically, if you’re under 50 but in a high-risk group, or if you're between 50 and 74 and haven't responded to the National Program calls, your doctor is stepping in. They'll be using a priority list to schedule and refer high-risk patients directly for a colonoscopy at a hospital facility.
Maria Collins33 Maria Collins33 Newcomer
2 messages
joined Feb 2023
#3610 ·
Susan Sanders59 said:The laparoscopic surgery is set for Tuesday. Once they get the biopsy results back from the part they're removing, we'll know if any light chemotherapy is necessary. For now, the medical board isn't recommending it.

@Susan Sanders59/">@@Susan Sanders59, how are things looking? I'm really hoping for some good news here. Based on what you've said, it sounds like it might be a milder case. It's probably a good idea to start rethinking those old habits ASAP and maybe grab some advice from a nutritionist.
Susan Sanders59 Susan Sanders59 Newcomer
1 message
joined Jun 2010
#3611 ·
Maria Collins33 said:@Susan Sanders59/">@@Susan Sanders59, how's everything moving along? I really hope things are looking up; based on what you've said, it sounds like a milder case. You guys should look into changing those old habits ASAP and maybe chat with a nutritionist.

He had surgery yesterday, and thankfully, he didn't need a stoma... He says he feels okay—there's pain, sure, but nothing he can't handle...
We're just waiting on the pathology results now. The surgeon mentioned the tumor was massive, but they managed to get all of it out. He also said there aren't any visible spots left around the area, though he can't give a 100% guarantee that nothing will pop up down the road (which makes sense)...

We’re staying hopeful. We are huge optimists when it comes to this stuff...

Do they usually perform these types of surgeries laparoscopically? That's the one thing that caught me off guard... I was fully expecting a traditional open surgery instead of laparoscopy...
The surgeons were actually some younger doctors. One of them we've known for years, so the vibe was much different than with the others. My dad mentioned it felt more like being at a high-end private clinic. 😁
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3612 ·
Susan Sanders59 said:He had surgery yesterday, but they didn't have to do a colostomy... He says he feels okay; there’s some pain, but nothing he can't handle...

We're waiting on the pathology reports now. The surgeon mentioned the tumor was massive, but they managed to clear everything out. He said there aren't any visible spots left nearby, though he won't give a 100% guarantee that nothing pops up down the road (which makes sense)...

We're hoping for the best—we're staying really positive about this...

Do they usually perform these types of surgeries laparoscopically? That's the only part that feels off to me... I was expecting a traditional open surgery rather than laparoscopy...

The surgeons were mostly younger doctors. We've known one of them for years, so the rapport felt different compared to the others. Dad says the whole experience felt more like being at a high-end private clinic like the Mayo Clinic 😁

Whenever it's an option, they go with the least invasive method. Generally speaking, the younger doctors tend to be more skilled when it comes to laparoscopic procedures.
Trivia: I remember reading an article once about how residents were actually more proficient at laparoscopic surgery than the senior professors. Apparently, it came down to growing up playing video games, which sharpened their ability to perceive 3D depth through a 2D screen from a young age.
Who says gaming is a bad thing?
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3613 ·
My dad started immunotherapy last week—pembrolizumab, with a 90% PD-L1 score—for lung cancer that's spread to his liver.
He’s also dealing with intense pain in his left shoulder, arm, and elbow... since the adenocarcinoma is in the upper left.
The pain comes in waves, often followed by these scary episodes where he just can't catch his breath.
His oncologist says the shoulder pain is just the tumor acting up, so he prescribed opioids—but they've been rough on him... making him feel totally numb and killing his appetite.
He saw an orthopedist today and got a block in his shoulder, which actually worked for the pain.
But then tonight, the breathing issues came back out of nowhere... he was struggling just to get air.
I called 911, the paramedics arrived, and the doctor says his entire left lung is filled with fluid—pleural effusion. We're currently waiting at the hospital for more tests.
So, my question is: does it make sense to push for a drainage procedure—thoracentesis, I think it's called—just to help him breathe easier? When I brought it up to the oncologist, he just waved me off like it wasn't necessary...
brightgull95 brightgull95 Newcomer
7 messages
joined May 2022
#3614 ·
You really don't have much ground to stand on here. If what you're describing is actually true—that an entire left lung is filled with fluid—then anyone who doesn't immediately perform a puncture in that situation is a total incompetent who needs to have their medical license revoked, specialist or not. Maybe the oncologist mentioned it back when the pleural effusion was negligible or just tiny, and if that was the case, then sure, they were right. But if the effusion had reached the point where a puncture was clearly necessary? Well, draw your own damn conclusions.
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3615 ·
Thanks for the reply.
But still... I’m going to push back if they won't handle it. 🙂
Assuming, of course, that the tests actually back up what the ER doctor claimed after just listening through a stethoscope.
brightgull95 brightgull95 Newcomer
7 messages
joined May 2022
#3616 ·
The only diagnostic step you actually need to take here—to figure out how massive this effusion really is—is an abdominal ultrasound. That’s it. Nothing more. And honestly? Any rookie could handle that without breaking a sweat.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3617 ·
Nicholas Johnson8 said:Thanks for the input.
But honestly... I’m going to push back if they refuse to do it. 🙂
That is, assuming the tests actually back up what that ER doctor claimed just by listening through a stethoscope.

When you're dealing with fluid buildup—especially pleural effusion—the real danger is that every single drainage procedure can actually trigger an even faster accumulation, which puts massive strain on the heart. It's a classic hallmark of the final stages of the disease. I don't know how else to put this more gently. Make sure to cherish every single moment you have left and focus entirely on keeping him comfortable.
Those shoulder pains are often caused by metastases, which could potentially be managed with targeted radiation therapy in just a few sessions.
Also, please reach out to a Pain Management Center. An anesthesiologist can carefully fine-tune a medication cocktail to provide relief without completely knocking him out.
Sending strength to everyone here, but above all, I hope you find clarity and peace of mind.

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mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3618 ·
Angela Wright said:When dealing with effusions in general—and especially when it’s in the pleura—the real issue is that every single puncture can actually trigger an even larger buildup, which happens faster and puts massive strain on the heart. It’s just... it's characteristic of the final stages of the disease. I don't really know how else to say that any more gently. Please, just cherish every single moment you have left and focus on making sure they aren't in pain.
Shoulder pain is also quite often caused by metastases, which could potentially be managed with targeted radiation over just a few sessions.
Also, please, do reach out for help at a Pain Management Center. An anesthesiologist can carefully titrate a cocktail of medications to provide relief without, well, making things worse.
I am sending you all so much strength, and above all, I hope you find clarity and peace in your hearts.

Sent from my Samsung Galaxy using Twitter

My patient lived for another 10 days in a nursing home after being discharged from the hospital. He had pleural effusion and pericardial effusion. They didn't drain the fluid at all. He was in such a heavy state during those last 10 days—fully conscious, looking right at me—and yet, he struggled so much just to breathe. It was painful to watch. I came in every single day to see him. It isn't easy, but you just have to endure somehow... you have to find a way to accept the situation.
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3619 ·
Such a massive pleural effusion developed over just the last ten days—right after we started immunotherapy with pembrolizumab.
We were really hoping for some progress, especially since his PD-L1 expression was over 90%...
But it looks like the treatment actually triggered this effusion instead.
shadowmarlin5 shadowmarlin5 Newcomer
2 messages
joined Mar 2023
#3620 ·
Hello everyone. I’m reaching out because a close family member is struggling immensely following their prescribed chemotherapy. It’s been days now, and they simply don't have the strength to even sit up in bed, let alone eat or drink anything. On top of that, they’re dealing with constant diarrhea, and I am deeply concerned that staying bedridden will lead to pressure sores very soon. One night, they were admitted to the hospital, only to be discharged back home shortly after—yet their condition just keeps spiraling downward. Before this chemo started, they were perfectly healthy. Does anyone have recommendations for a reputable private hospital or a specialized care facility that accepts and provides intensive support for patients in this specific situation?

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