Are doctors giving us the runaround?

Grumblegrumble · February 2013

This is my first time posting. I am concerned my mom's specialists are not efficiently coordinating care to effectively diagnose and begin treating her cancer. It's currently been over three weeks and will at least be another week more before she can reasonably expect any such care. Is this experience typical?

This month my mother has received an incomplete diagnosis of Stage IV distant metastasized cancer. She is in her early 60s and a survivor of triple-negative, chondroid metaplasia breast cancer from 2001. This new cancer was initially detected in an x-ray from 2/4. Later that week she had a pulmonary CT scan that showed lesions, cavities and nodules on her lungs and liver. She has since had a sonogram of the thyroid, a brain MRI and a full PET scan from her neck to knees. The PET scan, performed 2/22, showed the lungs, liver, thyroid, a lymph node in the neck, and the T3 & L5 vertebrae 'lit up' with FDG avid, and presumably cancerous, structures. Doctors are in the process of scheduling a spinal MRI for two days from now, although they do not believe an MRI to scan the whole of the liver is necessary at this time.

She had a transthoracic needle biopsy of her lung the week before last. The pathology was done by the hospital's chief pathologist, with a second opinion by another specialist out of state. Both analyses were inconclusive as to the primary source, although we were told tests showed the cancer cells to be triple-negative for HER-2, progesterone, and estrogen biomarkers. No final or preliminary pathology report has been provided to us. The oncologist who guided her through her previous cancer believes it is likely a recurrence of her past disease.

Her physicians now want to perform another biopsy to get a second sample to test. The ENT, whom she first met for the first time earlier today, wants both a lymph node and thyroid biopsy and scheduled a procedure for six days from now. Another pathology report, which last time took over a week to 'complete,' would then commence.

The largest lesion on her lungs grew from 4+ to 5+cm in the two weeks between her pulmonary CT and the PET scan. I am very concerned that by chronologically stacking these diagnostic tests as they have, the specialist doctors are using too much of my mother's (limited) time. Given the likelihood of a poor prognosis regardless, and given it's increasingly poor as the disease progresses, I would like a complete diagnosis and to begin treatment asap. I do not believe her current doctors share my great sense of urgency. No treatment has begun, and I have received no clear indication when it will begin or what its specifics will possibly entail. Personally, I'm quite fed up with the doctors' comfort with such a long ramp up to treatment.

Naturally, I understand I'm not the primary actor in this process, nor am I a medical expert. Nonetheless I feel that better coordination and scheduling of tests & specialists could have easily reduced our waiting time by a significant amount. I've asked if we should consider new providers and have been roundly rebuked because my mother likes the geographic proximity of the current specialists.

Is this SOP for a Stage IV mets diagnosis? Is it unrealistic to expect better?

Also, does anyone know a good online resource for median length of survival for various Stage IV cancers?

Thank you for the information. I really appreciate it!

-Grumblegrumble

Moiralf · February 2013

Hi Grumble,

I don't think I can help much with any advice apart from the fact that it can take time to make a complete dx.

Things are not always clear from scans and biopsies so docs need to redo and then try other tests. And they are not infallible, they are human like the rest of us and while they are usually very skilled and have great experience they are not gods and they can be cautious in giving dx without being sure.

Plus you are dealing with a very big system of healthcare and things take their time , funnily enough they might consider they are being quick. Have you questioned them as to the need to speed things up and when things might be expected to start.

As to survival etc, most of us here chose not to pay too much attention to them. We are all quite individual and so many different elements can influence events.

I hope you do get the answers you seek. And all the very best for your mother. It is a tough time for all the family.

Moira

floogendad · February 2013

Grumble,

As a caregiver to a Stage IV patient (my wife) I can understand your frustration with what seems to be a slow timeframe. We found my wife had become stage 4 by her having a seizure and at the ER found it had spread to brain lungs and lymph. We received no treatment for 3 weeks after she was released from the hospital...in the grand scheme of things (and you touched on it) your mom is the patient, if she is happy with the docs and the process they are working then her good spirits are better for her to go on than rushing to get a treatment started just to get treatment started. This is a process and some patients go through the process slower than others, some faster. Never ever focus on an expiration date (a nice term DW and I have given it) because then that becomes the focus, not maximizing the time (whatever is left). And as Moira pointed out every patient is differentWhen you are with the doctors ask your questions and voice your concerns about the timing of things (treatment related).

One thing that has served me well is a great support network for myself to help me deal with the enormity of the diagnosis. The boards here have been great as a way to find others in the same boat so to speak. We will keep you, your mom and your family in our prayers.

Margi1959 · February 2013

Hi Grumble,

First of all, let me tell you you're doing an excellent job of staying on top of things for your mom. Good job. She will need you to be her advocate in the journey ahead. Your story is very similar to mine other than my mom was 77 when diagnosed with Stage IV - this was her fourth round of it, the first one starting 16 years previously. I, too, asked the question 'how long does she have?' - I totally get that you want to know that. The best answer I ever got from a doctor was "you know what? there is no expiry date on the bottom of our feet, so everyone is different". Your mom has a younger age on her side. Technically, my Mum got another 9 months, but I think she got diagnosed about 2 years after the first metasteses to her bones, which her idiot doctor put off to arthritis or a "pulled muscle". When they officially diagnosed her, they told her two years so...all things considered, I think she got more than that.

After they did the bronchoscopy on my mom and found out it was breast cancer that was her primary and not lung cancer, I made a VERY tough decision on her behalf. I shut down all further testing. She had just been through so much and, at that point we already knew she had mets to all of her bony structure anyway so once we knew it was BC in her lung too and because these tests are just so damned invasive, I called it quits. My mum was trying to be brave but I could tell the testing was slowly killing her. I already knew she was against chemo so I didn't push for treatment for her, but I did push her to do some radiation which did alleviate some pain for her (although it caused about a three-week flare before it got better...something they didn't warn me of). I think once there is a stage IV diagnosis, and they realize that testing and more testing is only for scientific/curiousity, they do declare a patient to be in the palliative care status.

I let them put Mum in that status because I knew we weren't going to cure her, so my job became one of getting her as close to pain freedom as possible. They had been giving her morphine and that nearly killed her until I bitched long enough to get them to switch her to fentanyl patches. Doing that, allowed her to be able to go home again, celebrate her 78th birthday and get another 9 months at home. We knew what we were dealing with, so we chose to do it one day at a time with pain control being job one. Sure, it was a bumpy, brutal ride at times but I was so blessed to be able to spend nearly every day of her last nine months with her. She raised me (a single mum), her only child, so our bond was wonderful. We covered a lot of ground in those nine months, a time in which our roles slowly reversed. One of her last days, and she was in hospice by this time, I went to see her in the morning and said "hi Mum" and she answered me back "hi Mum" It was a long and glorious goodbye and certainly not the ending I would have wished for my super hero - I figured when her time came, she would either die in a ski racing accident or a sudden and fatal heart attack like her father did, I sure didn't think she'd go by inches like she did. Looking back though, it gave me more time to get used to learning how to live without her - maybe it was God's way of preparing me.

I apologize if this is brutal for you to hear, but I sure wish someone had been candid and realistic with me instead of giving me false hope in the early days. I don't think it took long for it to dawn on me that I actually WAS losing her but I got real sick of folks saying that she was going to "live forever". My mum was like Shirley McClain - a tough one who everyone thought was bulletproof.

Grumble, I know it's hard to hear and I am so sorry that you have started this phase of the journey with your Mum. Please know that I am here for you, however you need me to be. I've walked in your shoes. Make your Mom proud of you in the coming months - show her that all she taught you has sunk in. I can tell already that you're a great daughter and wonderful caregiver. Please remember to find some time for yourself along the way, ok? Caregiving is a brutal job. You're not going to be worth much to your mom if you crash, so please remember to give yourself some time off along the way.

hugs,

Margi

Are doctors giving us the runaround?

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