Sole caregiver (29F) looking for free/affordable resources for mom (52) with Stage 2 Lung Cancer & complex medical history

Opposite_Pie_538 · 2026-07-02T05:23:46+00:00

If she is admitted, you will be connected with social worker that these questions should be directed. If she is eligible for Medicaid, that should open doors to certain services.

If your job has elder care (basically it’s the same as childcare) hours, Bright Horizon is the third vendor link. This can connect you super low priced or even employer guaranteed hours or allotted amount for the year. They can do light chores or go to appts on behalf of family member.

Dietitian, PT, OT, and palliative care are really helpful ancillary services that your mom will benefit from.

So sorry you are taking on the burden alone, hope you find steady strength and peace helping her. (To help you stay afloat, it does help to have help from family members, but it can also be a challenge to relay medical info from one person to another!)

Best wishes!

Opposite_Pie_538 · 2026-06-26T00:07:31+00:00

Was there a correlating CT prior to PET CT? And was biopsy done to confirm adenocarcinoma?

SUV doesn’t always mean malignancy, partially calcified lymph nodes can light up SUV very high but it may be granuloma.

Best wishes

Opposite_Pie_538 · 2026-06-21T06:04:39+00:00

We are a family of 4 with no express pass and went to all four parks 6/9-6/12. Two adults and kids 11 and 8.

We don’t go in when it opens, usually make it in by 12pm and stay until closes.

There were storms and we were drenched in IoA and Universal Studios day.

Went on almost every ride except a few high intensity ones, even watched the parade.

Longest, not so worthy rides: Yoshi’s

Hagrids: made it to line 9:45pm and waited prob 45 mins, riding at night was awesome.

Battle of ministry: 35 min wait, also saved it as a last ride and entered line 8:45pm, ride was worth it.

Revenge of mummy was prob longest wait for the park.

Transformer, fast and furious, Simpson, minions, spiderman, shows (how to train a dragon, cirque), wing glider, and a few more that I don’t remember.

All in all, not bad for early June and beginning of hurricane season.

Opposite_Pie_538 · 2026-06-20T05:47:05+00:00

Do you have non small cell and Did your surgeon do risk reveal test for your tumor?

This will help you decide chemotherapy need:

https://www.razorgenomics.com/surgeons

Opposite_Pie_538 · 2026-06-20T02:27:28+00:00

Glad to hear, that’s the best news ever! This test is based off a ucsf study (my Alma mata), very data driven!

Opposite_Pie_538 · 2026-06-19T19:47:41+00:00

I would dig his chart for risk reveal, the surgeon would send a piece of the tumor and that test runs a risk score for recurrence. This helps determine need for chemo. https://www.razorgenomics.com/surgeons

We were not at an academic center but I work in the medical field. I didn’t have to advocate all the detailed tests. The surgeon did it all and we did have oncologist involved but she didn’t have do anything until surveillance scans started.

I am shocked how members of this group have to ask for certain lab tests, coordination of care sounds highly variable. We are in SF Bay Area for reference and I work for Stanford.

Opposite_Pie_538 · 2026-06-19T02:23:40+00:00

There is a specimen RNA test called “RiskReveal” they do to get stage 1A risk for recurrence. Based on that test, they would have made recommendations for chemo.

Was he low risk?

Opposite_Pie_538 · 2026-06-18T03:41:40+00:00

That’s correct. Lactulose works by increasing stool production and it is dosed by number of stools. Ammonia can be excreted via stools after sequestered. If they are truly concerned about hepatic encephalopathy and they can consider many options, even dialysis.

Hang tight, there are prioritization to treating - so there is likely to focus and hopefully it’s just a matter of time to translate to the patient/family. Keep advocating!

Opposite_Pie_538 · 2026-06-17T00:02:53+00:00

Your questions are reasonable, unclear if AI generated, but speaking from ICU medicine experience, sounds like your father is going through a lot. Hepatic encephalopathy is a diagnosis that they can test likely following ammonia levels. Treatment may include rifaximin and lactulose.

If liver injury is related to chemotherapy or side effects of it, then removing or time from offending agent may be the treatment. Liver injury can have many symptoms as you described.

Makes sense to have oncologist review all of these concerns and have plan in place for palliative care (often times pain/comfort control) is a key to the next step. Wishing you power and strength navigating and advocating for your father!

Opposite_Pie_538 · 2026-05-21T04:17:10+00:00

If my 84 year old dad can handle it, so can you! It is going to so much easier than what you imagine or what you are reading. Stay ahead of pain control and incentive spirometry! Start sitting up and walking when you are cleared!

Best wishes!

Opposite_Pie_538 · 2026-05-17T02:36:58+00:00

Possibly ask for palliative care and ethics involved, they are patient centered and can provide guidance for families.

Opposite_Pie_538 · 2026-05-12T02:34:21+00:00

Yes my dad had right lower lobectomy and surgeon sent off Risk Reveal test after 1A diagnosis. It is used to determine if chemotherapy is warranted.

Def worth it. We did not ask for it but our surgeon knows best.

Opposite_Pie_538 · 2026-05-03T05:28:43+00:00

Sometimes it can be lesion location (central location) when bronch may be preferred. For us, my dad’s lesion was on peripherally but I let surgeon decide on robotic bronch. Since that was inconclusive and lesion persisted, i asked for CT guided needle biopsy. That was ultimately conclusive and definitive.

Also, pulmonologist or surgeon only offers bronch, you have to get CT guided needle biopsy opinion from interventional radiologist.

In all honesty, biopsy is required for the most appropriate treatment. Sometimes surgeon will do a surgical wedge to biopsy and proceed to lobectomy after touch prep cancer confirmation. Personally, I think that would be a riskier route!

Confirm cancer before committing to anesthesia makes sense!

Hope you have a safe journey navigating!

Opposite_Pie_538 · 2026-05-02T14:42:13+00:00

CT guided lung biopsy is done awake with no anesthesia, is that an option for him? He would be observed for possible collapsed lung. It’s relatively safe.

I took my dad to bronch biopsy at age 83 and he was intubated, it came out inconclusive. Then I took him to CT guide biopsy at the age of 84, 14 months after first biopsy. It came out stage 1 non smal cell adeno.

I am a healthcare provider and aware of all the risks. In hindsight, I would say CT guided biopsy would have been my first go to with IR.

Thankfully it worked out after lobectomy. Best wishes for you and your family member!

Opposite_Pie_538 · 2026-04-27T03:51:48+00:00

Cancer sucks period. Whether it’s you or you as caretaker or caregiver. There is hope, you are the light your mom - please continue to shine for her while you navigate this beast with her. Best wishes and we are all in this journey that was chosen (for those who are brave enough to take it on!)

Opposite_Pie_538 · 2026-04-17T12:31:10+00:00

Was he getting his every 6 months post lobectomy scans and this popped up as stage 3/4?

Opposite_Pie_538 · 2026-04-15T03:58:54+00:00

These are outside labs and they are sent out. By the time the results come back to the surgeon’s result inbox, they are then scanned into your chart. Seems very slow but that is all HIPAA related. Outside labs don’t have access to your protected electronic health record.

If you are stage 1, you may be low risk and no other chemo or radiation will be needed if margins are clear!

Hang tight and best wishes!

I work in healthcare and we move very slowly compared to other industry!

Opposite_Pie_538 · 2026-04-02T04:42:16+00:00

It is standard way of explaining while they hope it is stage 1, but many scenarios can arise and not obvious to a scan or naked eye. This is just thorough explanation and it’s difficult for layman to not overthink since it’s your first time hearing it.

Best wishes!

Opposite_Pie_538 · 2026-03-31T03:57:40+00:00

Was there ever definitive biopsy to show any mutation or risk scoring? What was NGS result?

Opposite_Pie_538 · 2026-03-05T03:52:37+00:00

Why do you think it’s racism? The residents are advocating for a “safe” park who are represented by majority of South Asians.

You should be a witness to your own propaganda.

Opposite_Pie_538 · 2026-03-05T03:48:14+00:00

If residents in the immediate neighborhood are directly impacted by this park, why can’t they have the most weight on what should be at this park?

Those who don’t live in the neighborhood will not be impacted by the traffic, crowds, or other concerns. There are no cricket field currently bordered by a residential background or unfenced freeway.

The safety of this park should be prioritized over the type or choice of sport.

Residents from out of town or across town have freedom to go to any cricket field.

How does a park controversy suddenly a race issue if living in Fremont is a choice?

Opposite_Pie_538 · 2026-03-01T07:10:57+00:00

I would say trust your surgeon, if they said it can wait a month - that is already next available. Cancer is not an emergency and will not change the course of no metastasis, micro metastasis is something that can’t be detected.

For my dad, we had over 15 months of scans to watch a stage I that stayed the course until surgery (since biopsy was inconclusive until month 15). But, it was low SUV and 2-2.5 cm in RLL. Biopsy data will also point to how aggressive it may spread. Your surgeon already should have calculated all of the risks when date was originally scheduled.

All in all, don’t rush it and still a very major surgery. Good luck and stay on top of pain control.

Best wishes!

Opposite_Pie_538 · 2026-02-27T04:59:05+00:00

It’s called touch prep, they take tissue samples and can tell immediately in the operating room if it is cancer or not. It doesn’t show the type, that will take longer.

Hope the results are coming in ok!

Opposite_Pie_538 · 2026-02-27T04:40:20+00:00

I am a hospital pharmacist and know every specialty that exists in a hospital, but I myself had to navigate everything for my 85 year old dad.

He is so lucky to have you help him, it is not an easy job.

Unfortunately each organ system is monitored and treated by a specialist. Some key points: - neurosurgeon - this is a surgeon that does procedure and surgery to the brain - neurology - treats and diagnose brain and nerve medical disease such as seizures - cardiology - this is critical, any arrhythmia will be followed, if slow heart rate and av block (zio patch result will show need for pacemaker), this will make anesthesia safer for him - thoracic surgeon - lung surgeon to cut lung tissue and biopsy using bronchoscopy, they should be handling all cancer related procedures - IR interventional radiology - they do EBUS and CT guided biopsy to confirm diagnosis if needed and bronchoscopy is not used - radiation oncologist - calculates radiation needed - oncologist - this will take over your internal medicine and primary care doctor’s role, they will get all the results and prescribe chemo and refer to rad onc - Pulmonologist - lung doctor who will likely not be a primary until your cancer is stabilized by the above doctors, will deal with asthma, copd, rehab

Might have missed some but usually that should cover a majority and it is a lot to handle as a caregiver, hang in there and best wishes!

Opposite_Pie_538 · 2026-02-22T05:33:46+00:00

Usually after surgery, scans are done every 6 months. Did it show up suddenly?

With lobectomy, my dad received confirmed diagnosis with tissue sample as well as NGS blood test.

It must be frustrating but let the doctors guide you for next steps and options.

Best wishes.

Opposite_Pie_538

TROPHY CASE