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My introduction & The Inevitable Diagnosis


DonnaKay

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Good evening.  I joined earlier today and have spent some time reading others’ introductions.  I've already found comfort, so thanks in advance. We are facing the very likelihood of my 87 year old Mom having lung cancer. Mom's back was hurting for months and we finally got her convinced to see a neurologist.  When my brother went to pick her up last Friday morning she was shaking and couldn't walk more than 5 feet without needing to sit. After the appointment, he took her to an ER. They did a CT. Her back is a mess...but that's the least of our problems right now.  She was severely anemic, was admitted and given 3 units of blood. Probably actually needed a 4th. I think she hasn't been taking her prescription Zantac (she had ulcers healed over 30 years ago) and the gastro doc who saw her in hospital thinks she has a slow bleed in her stomach.

Now the lungs… this is what the report on the CD we got at discharge says: (copied & pasted directly, no edits)

Pulmonary parenchyma: There emphysematous changes. There is a lobulated spiculated mass in the right lung apex which measures on the order of 2.1 cm in greatest diameter. There is a smaller spiculated mass just anterior, medial, and superior to this. There is a large spiculated cavitary mass in the left upper lobe which measures on the order of 6.6 cm in greatest diameter. There is a spiculated solid mass in the left lower lobe which abuts the pleura both laterally and at the diaphragmatic surface. The maximum diameter is estimated at 8.1 cm. Minimal fibrosis at the right lung base.

The Pulmonologist who saw her in hospital said she needs to get a biopsy to confirm or rule out cancer in her lungs and the gastroenterologist wanted to do an endoscopy to confirm or rule out a slow bleed in her stomach. He also wanted to do a colonoscopy to check for colon cancer. She refused all of this at hospital.

But now...

We are starting with stomach.  Her overall condition has deteriorated. She has gone from 120 just 3 years ago to 85 pounds.  She lives 3 hours away and always was putting off having me visit or bring her to me for a visit (weather… any excuse really) She didn't want me to see that it is very apparent that she cannot live alone. Surprisingly it did not take much convincing to have her agree to come home with me and get  tests done in my area.

Since coming home with me on Christmas Eve, she has really perked up. She ate good until today (12/28)...today she ate very little and slept a lot. She told me thank you for taking good care of her and making sure she took her meds.  I got her an appointment to see my PCP on Jan 2 (took some begging as the scheduler said first availability was not with my doc, but another, and would be Feb 11). I sent a message to my doc thru my patient portal & got a call within an hour! We will get labs done on 2nd.  Endoscopy scheduled for Jan 3. Once we know what we are dealing with on gastro, we will tackle lungs. I told Mom this was like runners jumping hurdles. They don't jump them all at once, they jump them one at a time. And that's what we're gonna do.

I thank God for moving me to early retire in August. (I am 59)  He knew what was coming my way. My brother is retired Army, disabled with PTSD. He is staying in Mom’s area, cleaning her house, making minor repairs. He can't handle the mental, emotional part of this. He is coping by keeping busy.  Bless him. I don't think we can let mom move back. I'm working on making my guest room hers for now. God bless my husband for telling me to bring her here, even before I could ask him.

I'll be reading relevant forums and will have questions as I move through the coming months. Thanks for being here, and for being someone I can lean on 24/7.
 

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Hi, Donna, and welcome.

Glad your mom is now willing to let you help take care of her.  My guess, based on the CT scans, is that this probably will turn out to be lung cancer.  Between the size of the masses and the spiculation, that would be pretty typical for lung cancer.  The number, location, and size of the nodules/masses suggests surgery probably will not be an option.  Assuming that cancer is confirmed, treatment will most likely be radiation and/or chemo or some other drug therapy.  

Glad you found us--there is a lot of good information and support on these forums.  Keep us posted on how you all make out with the tests.

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Hi, Donna,

Your mom has a lot going on. I hope the endoscopy goes well and whatever they find can be treated to restore her appetite and make her feel better. I assume your next step would be to meet with an oncologist, thoracic surgeon or the pulmonologist about the scan results and how to proceed. It sounds like she is more open to the process now that she is not so far away and alone. My input would be that ultimately, the treatment decisions are hers. The back pain could be related to what is going on in her lungs. Often that is one of the early symptoms of lung cancer. Depending on the position of the lung masses, even a needle biopsy is invasive. I am also sorry to say that the involvement of 3 of her 5 lobes, both on the right and left, does not sound too encouraging. She may only be a candidate for systemic treatment like a chemotherapy/immunotherapy combination. I cannot say based on what you have shared, but you will be presented with the options by the medical professionals. Do not be dismayed if one of those options includes considering that she is 87 years old, weighs 85 pounds, has other medical issues and what they call her “performance” status may influence their recommendations. Again, the decisions are ultimately hers based on the information the doctors provide. And as a daughter and son, I’m sure you do not want to put her through  a treatment that could make her feel worse. Her comfort and desires should guide you. Listen to the doctors, not what sounds like my (a stranger’s) opinion.

cynthia

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Hi Donna and welcome,  I'm sorry to hear about your mom's medical issues. It's good that you're involved in her care now. I agree with what LexieCat and Cindy have written.  You might consider asking for a referral to a palliative care doc. I don't mean hospice- It's too soon to be thinking along those lines. Palliative care can be part of hospice but it's also useful on it's own. Palliative care  can help with symptoms of serious disease and help a person have the best quality of life possible. It can help coordinate care when a person has multiple issues, as your mom does. Best wishes and keep us posted.

Bridget O

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Welcome Donna,

I've very sorry to learn of your mom's diagnosis.  Indeed, you've got a tough row to hoe with the lung tumors and her gastrointestinal complications.  You also have some difficult decision ahead regarding lung cancer treatment.  My reading of the CT scan also is suggestive of lung cancer and the presentation in both lungs substantially narrows treatment choices and complicates outcomes.

I think you are on the right path seeking a remedy to the gastrointestinal problems first, then dealing with the lungs. I also agree that palliative care could be a way to deal with her lung cancer in a way to avoid the side effects of curative therapy and improve the quality of her life.  So ensure you understand and explore this method of treatment when you consult with her oncologist. Here is an explanation of palliative care that may be helpful. 

We are here to help as you move forward with diagnosis and treatment.  Don't hesitate to ask questions.

Stay the course.

Tom

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16 hours ago, DonnaKay said:

Good evening.  I joined earlier today and have spent some time reading others’ introductions.  I've already found comfort, so thanks in advance. We are facing the very likelihood of my 87 year old Mom having lung cancer. Mom's back was hurting for months and we finally got her convinced to see a neurologist.  When my brother went to pick her up last Friday morning she was shaking and couldn't walk more than 5 feet without needing to sit. After the appointment, he took her to an ER. They did a CT. Her back is a mess...but that's the least of our problems right now.  She was severely anemic, was admitted and given 3 units of blood. Probably actually needed a 4th. I think she hasn't been taking her prescription Zantac (she had ulcers healed over 30 years ago) and the gastro doc who saw her in hospital thinks she has a slow bleed in her stomach.

Now the lungs… this is what the report on the CD we got at discharge says: (copied & pasted directly, no edits)

Pulmonary parenchyma: There emphysematous changes. There is a lobulated spiculated mass in the right lung apex which measures on the order of 2.1 cm in greatest diameter. There is a smaller spiculated mass just anterior, medial, and superior to this. There is a large spiculated cavitary mass in the left upper lobe which measures on the order of 6.6 cm in greatest diameter. There is a spiculated solid mass in the left lower lobe which abuts the pleura both laterally and at the diaphragmatic surface. The maximum diameter is estimated at 8.1 cm. Minimal fibrosis at the right lung base.

The Pulmonologist who saw her in hospital said she needs to get a biopsy to confirm or rule out cancer in her lungs and the gastroenterologist wanted to do an endoscopy to confirm or rule out a slow bleed in her stomach. He also wanted to do a colonoscopy to check for colon cancer. She refused all of this at hospital.

But now...

We are starting with stomach.  Her overall condition has deteriorated. She has gone from 120 just 3 years ago to 85 pounds.  She lives 3 hours away and always was putting off having me visit or bring her to me for a visit (weather… any excuse really) She didn't want me to see that it is very apparent that she cannot live alone. Surprisingly it did not take much convincing to have her agree to come home with me and get  tests done in my area.

Since coming home with me on Christmas Eve, she has really perked up. She ate good until today (12/28)...today she ate very little and slept a lot. She told me thank you for taking good care of her and making sure she took her meds.  I got her an appointment to see my PCP on Jan 2 (took some begging as the scheduler said first availability was not with my doc, but another, and would be Feb 11). I sent a message to my doc thru my patient portal & got a call within an hour! We will get labs done on 2nd.  Endoscopy scheduled for Jan 3. Once we know what we are dealing with on gastro, we will tackle lungs. I told Mom this was like runners jumping hurdles. They don't jump them all at once, they jump them one at a time. And that's what we're gonna do.

I thank God for moving me to early retire in August. (I am 59)  He knew what was coming my way. My brother is retired Army, disabled with PTSD. He is staying in Mom’s area, cleaning her house, making minor repairs. He can't handle the mental, emotional part of this. He is coping by keeping busy.  Bless him. I don't think we can let mom move back. I'm working on making my guest room hers for now. God bless my husband for telling me to bring her here, even before I could ask him.

I'll be reading relevant forums and will have questions as I move through the coming months. Thanks for being here, and for being someone I can lean on 24/7.
 

PET scan and lung biopsy to rule out lung cancer.

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Hi Donna,

From one caregiver/daughter to another, I am sorry. But I am very happy to hear that your mom came home with you and that your husband is supportive of this decision! My parents took in my grandparents at the end of their lives. Although times were stressful, my mom was so thankful to have that time with them and looks back at the memories very fondly.  You are a wonderful daughter to agree to take in your mom 💛💛

I'm sorry to hear about the multitude of serious issues your mom is dealing with. I echo what everyone has said previously. Depending on what type of lung cancer your mom has, there may be a few different options that are less traumatizing to the body than traditional chemo. But one step at a time.

I'm glad you found these forums and know we are here for you.

Take care,

Steff

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Thank you all for the information, advice, candor and most of all support & encouragement.  I had been researching palliative care yesterday, along with some hospice services that are not end of life in nature.  I failed to mention that two of our adult children & a daughter in law are RNs. They are already such a comfort.  

Mom's mind is still about 95% so I want her to make as many decisions as she feels comfortable with.  She was Dad's caregiver when he was diagnosed with multiple cancers in November 1997 up until his death just 2 months later.  She saw his weight drop dramatically, his energy leave, and his mind slip as they kept him on morphine in the last days.  Sometimes I look over at her and she seems to be so far away in thought.  I pray she realizes that 20 years has yielded better treatment and to not compare herself to him.

Cynthia, one ER doc told her that her overall health wasn't good enough for her to survive surgery.  I hate it was said, but I understand why it was said.  I'm prepared to hear it if it is said again.

I'll be visiting forums, and learning all I can. I found the Lungevity checklists and questions to ask doctors and will make sure I put them in my notebook. 

I'll post back after the appointments on 2nd and 3rd.  

Thanks again everyone.   I really appreciate your support.

 

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It's great you have those RNs in the family.  And also that you want her to make as many decisions as she is comfortable with. You probably know (from your RN's) that, while a person is able to make decsions, they can designate who they want to make decisions when they are no longer able to. My mom had appointed me to do this and it was on file, so when she took a bad turn near the end of her life and was only intermittently conscious,  I did need to step in and make some significant decisions. Had that signed form not been in place, I'm not sure what would have happened.One doctor was proposing to do a surgery when others had said mom wouldn't survive any surgery and it was clear to all that she had only days to live, regardless of what was done to or for her. So she was able to have peace and dignity (and no apparent pain) in her last days.  This stuff is really hard to deal with!  Your family isn't alone in this. We're here for you.

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Thanks Bridget. Once we get a handle on gastro issues, I'll be scheduling us an appointment with the elder law attorney who helped my husband's family. I don't want her to worry, and by her calling the shots and making the plans, I think it'll give her a lot of peace. 

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An update for my new support team (if you are reading this, you're a part of the team). Mom saw my (now her) doctor yesterday and got bloodwork done. Both hematocrit & hemoglobin were within normal range again. Iron is up, still needs to be improved.  

Mom had the endoscopy today. No stomach bleeds (Praise God), but she does have a rather big hiatal hernia.  The Gastroenterologist took the time to talk to us about lung cancer as described on the CT.

She will see a Pulmonologist on Friday the 11th.  It became obvious quickly that I need a wheelchair to get her in & out of doctor offices. So the PCP gave me the DME prescription for Medicare to cover it, but it can't be filled because mom's staying with me, 3 hours away from her zipcode. I spent an hour on phone on hold & talking with Medicare but no luck. They said I would need to drive the 3 hours to get it or see of I could pay to have it shipped. It didn't seem to matter where all she lived when paying in to SS & Medicare her entire life...and Medicare is a FEDERAL program, right? 🤔 so I found a new, in box wheelchair on Craigslist for $50. Picking it up Saturday. Why is this stuff so hard to get when you need it the most and are already stressed & stretched to your limits?  Rhetorical... you don't need to reply because I already see your heads nodding in agreement. 

Will update again after Pulmonologist sees her. Thank you all for being here and for reading. 

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DonnaKay,

I am happy to hear that your mom's endoscopy went well. I wanted to give you my thoughts about assistive devices: there may be an "agency" in your area that allows people to borrow assistive devices and other medical devices.  This works great to try out various items or to use items that will only be used for a short time. In my mom's town, the "agency" is called Knights of Columbus. We have borrowed wheelchairs, a hospital bed, walkers, and various shower chairs. It's a big help for those on a fixed income and can also help to get thru in a pinch if your own device breaks.

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Donna,

Many Texas towns, at least in the DFW area, have a charity organization called Helping Hands.  The one in my town -- Rockwall -- provides disabled assistant devices both on loan and at greatly reduced cost.  You might want to start looking for a medical bed should your mom decide on home hospice.

Stay the course.

Tom

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