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Hospital has failed us - wait&watch approach for aggressive neuroendocrine cancer

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Posted 5/26/2017 8:10 AM (GMT 0)
hi all,

we just got news that my dad's cancer has spread even further and is moving super fast. mets that were 6mm a week ago are now 9 cm. mets absolutely everywhere, lymph nodes, entire spine...it's just a nightmare.

the oncologist decided on a wait&watch approach for my dad's metastatic cancer, which was confirmed to be neuroendocrine prostate cancer (a rare and often deadly mutation of prostate cancer)

my dad had a single met to the spine at diagnosis in feb (neuroendocrine confirmed april 7th, but had been suspected since feb) and in april it was still just one met. we met with the med onc, who seemed like a nice guy, and he said he wanted to watch & wait. we had a whole list of treatments which we asked him about but he said they don't apply yet or just ignored some of them altogether.

we said we were concerned with the approach, as we know it's a rare and often deadly mutation, and that it's very aggressive, so systemic treatments (aside from just hormones, which he himself admitted don't work with this type of cancer) quickly were needed. and we know that hitting cancer hard when it's low volume can help control it better than when it's high volume.

in the end, he said he knew what he was doing and to trust him...so we did. i feel so awful about it...i wish we'd been pushier or taken him to someone else, or got dr kwon involved sooner. we have an appointment with him on thursday but right now we're not even sure if my dad will make it to thursday or if he'll be ok to travel, or if dr. kwon can even offer anything at this stage.

do you think we messed up? in my gut it felt wrong to be watching and waiting an aggressive cancer. but it's a hospital which comes highly recommended. maybe our med onc was just out of his depth with the rare type? he said he'd treated others with it before and sometimes it really is just one met that ever shows up. but it wasn't worth taking that risk. if he'd got him on carboplatins as soon as we found out it was NEPC and volume was still low, or done the sensitive scans we kept asking for, maybe things would've turned out differently?

were we too trusting? we just felt like we were finally in good hands. what should we have done differently?

my mom is in a catatonic state right now - only able to cry and scream. we are devastated. why did our med onc watch and wait?
Posted 5/26/2017 12:52 PM (GMT 0)
The worst thing you can do now is to go though the "what could I have done differently" guilt. My wife sometimes wonders if she should have been a more effective advocate for her mom who had end stage cancer but I keep telling her we did the very best we could at that moment in time.

It is what it is.
Posted 5/26/2017 1:05 PM (GMT 0)
Hi snowcake,

You seem to be beating yourself up about believing this oncologist like it's your fault and you should have known better. And it must be so tough to deal with your own grief let alone dealing with the terrible grief your mother has. I recognise the need to bring some control into a situation so out of control but you cannot make this situation any better by second guessing yourself, treatment decisions or the decision making of the oncologist that you trusted.

Meditation may help you get back to the here and now. You have your dad with you now. The situation is what it is and whether he wants to fight this or whether he doesn't, it is his decision. Getting back to the here and now will help you hear your dad's voice more clearly and will help you be there more for your dad and your mum.

All of this is easy for me to say and will probably be very hard to do when my dad, who is my hero, is in a similar situation as your dad. I wish you and your family strength at this time.

Regards,
An
Posted 5/26/2017 1:51 PM (GMT 0)
Snow cake

Wow, the disease really is a beast. It seems that there really is not, nor was there ever much that could have curbed the effects of this rapidly moving form of PC. Your doctor has done nothing wrong and neither have you. You are looking for a place to assign anger, wrong doing and blame. Your mom is out of control. Your Dad is rapidly regressing. The unreplaceable time that you have left with your Dad can be banked in your memory as a time when you shared love, appreciation, remembrances of past good times, assurance of his positive legacy in your life and that of your family or it can be a time of bitterness, anger and second guessing. How you choose to spend this precious time will effect you emotional health long after your Dad is gone. This is a time when you are building your legacy. A time to honor both of your dear parents when they are in need. Only you can do this loving act of support, mercy and love. I pray that God will strengthen you for this singular assignment that you have before you. We all here at HW have seen, through your postings, your compassion and concern. Others here have been where you are and will give you encouragement. You can do this. Keep posting.
Posted 5/26/2017 2:49 PM (GMT 0)
snowcake, I normally do not post in this forum, however I read in many forums here at HW. I do understand how you are feeling. I have been there with my own dad. His did not have PC, he had heart problems that required surgery. He had a history of kidney problems prior to the surgery. The dye used in one of his test finished his kidneys off which we were aware of & ended up on dialysis. I managed to get him in an inpatient rehab facility upon finally being released from the hospital. I had made him a promise of no nursing home, which was suggested by his drs. I made calls to a couple dr friends & managed with their help to keep that from happening. His kidney function came back a little, so the kidney specialist took him off of dialysis. He made it 11 days & went into renal failure & had a massive heart heart. He was to be released to go home the day after he passed. Up until that morning he had just flourished in the rehab facility. We were absolutely thrilled with his progress it was far more than we could have ever hoped I blamed the rehab facility & it just went on & on in my mind. This what if I had done this or had done that nearly drove me over the edge. My mental state was so bad I ended up quitting my job, I was not in a good place.

Six months after losing my dad, my mom was dx'd with terminal cancer & we were told at best she had 12 months to live. I felt like the rug had been pulled out from under me again. She lived in another state & I brought her to my house to get her the best medical care possible & help take care of her & have time with her. The 11 months I had with her I will cherish forever. In those 11 months I learned so much about my mom that I never knew. The new memories we made were just incredible.

You cannot go back & rewind the clock with your dad. Stop placing the blame on yourself or the dr or whoever. What you can do is make the most of what time you have left with your dad & make even more wonderful new memories. Your dad is going to need you & so is your mom. If possible sit down with your mom, just the two of you & make a pact that the two of you will make the most of your time with your dad. If you are not careful both of your parents will pick up on these feelings you are having & you don't want that. You dad would not want you feeling like this & that very thought helped me during some dark times.

I am sorry that you find yourself in this situation but live in the moment with your parents, not in the past. You will thank yourself later.

Take care.
Posted 5/26/2017 2:51 PM (GMT 0)
I'll second Octoboro's advice. Don't lose the beauty of today regretting the past or fearing the future. Much easier said than done... it's human nature, but it's not helpful or fulfilling. You've posted many times now how distraught you are and how mistreated you believe your husband has been. This is just my opinion, but I don't think that's really the situation.

For what it's worth, my humble layman's understanding of metastases differs from what you're perceiving right now. Others may differ, but for what it's worth here's my impression of what's happened.

The initial met was only the first bloom of a crop planted quite a while ago. It was spotted first, as it caused trouble, but the others were already in place and waiting to bloom just a bit later. The first met didn't spawn the rest, they were already there. Your onco didn't do anything wrong in the way you're thinking, that some aspect of handling that first met created the subsequent spread.

These are tiny cells. From the time the first metastatic-capable cells wander away from the prostate and land in hospitable locations, it takes many, many doublings for them to become detectable. I've seen estimates from 25 to 45 doublings or so to go from individual cells up to pea-sized tumors. The time per doubling is thus important, that's the time for the cells to divide. That time can be about 2-1/2 years for normal prostate cells, down to weeks for pretty aggressive cancer cells. I'm not sure just how much faster they can double, but since they start so tiny, for over 2/3 of the tumor's life they're undetectable, and that's really a pretty long time. Obviously since it's a doubling situation, once they reach a detectable size, the apparent growth rate seems alarming, but that's just the nature of doubling.

If the doubling time was a really fast 2 weeks let's say, then even 25 doublings would take a year. So clearly those subsequent mets couldn't have just come from the first one you noticed.

The widespread mets you're now seeing must have been growing in place already for a long time, not just the short interval since you saw the first one. This is a point we've discussed a lot on this forum, whether or not it's useful to treat early-detected mets or not. If not symptomatic, it's quite unclear whether any treatment to early mets makes a difference in the progress of the overall disease. It intuitively seems like it should help, and it's gratifying to be "battling" the disease by whacking at it, but that effort may be otherwise quite futile.

Please take a deep breath and turn off the regret fountain you're splashing in. This is not a situation you can control very much. That's a big problem with cancer in general, in that it frustrates our innate need to be in control. We're not, and cancer thrusts that right in our faces. Your husband was dealt a bad hand, and there's only so much one can do when the cards are not in our favor.
Posted 5/30/2017 3:49 AM (GMT 0)
thanks all. i appreciate the kind words and also words of wise advice.

redwing, that's not quite what i was thinking when talking about treatment. i don't think they all bloomed from the one spine met, i also think they were likely always there and just "woke up" -- who knows how.

but my concern is more around the watch and wait approach in this scenario. when we spoke to the onc we made it clear we were very worried about what path this cancer can take and how quickly, and that we just didn't feel comfortable waiting so long...a month seemed like a really long time. we also knew that traditional scans don't always pick up this strain of cancer, and asked many times to get one that does in case there were things we couldn't see (and that it was more than "just one")

the second scan a month after the first one showed lung nodules as well as liver involvement. i feel that the med onc should've acted fast as soon as he saw that. instead, he told my dad it was ok for him to take a short trip and that he'd discuss the results when my dad got back but that it was nothing too serious. i'd say evidence that NEPC has spread to lungs and liver is pretty serious and requires immediate action. as of a few days ago (and new scans showing even more disease spread) no action was taken. the only reason action was finally taken was because my mom took my dad to emergency and demanded it. if she hadn't, my dad would still be waiting to see the med onc.

i just wish action was taken the first week of may when the scans revealed lung/liver involment and maybe things would've been a little easier to tackle while volume wasn't as high as it is now.

anyway, the emergency room visit at least resulted in my dad getting chemo (his onc had said it's not an option but a team there decided that it is) he had his second cisplatin/etoposide combo today and will do another one tomorrow.

i'm still hopeful despite everything. i do feel like i wake up everyday in a nightmare but there are always people who beat the odds. the kindness of strangers and people willing to help when they see someone else going through hell is also something that keeps giving me hope.

please keep my dad in your prayers.
Posted 5/30/2017 11:42 AM (GMT 0)

snowcake said...
...redwing, that's not quite what i was thinking when talking about treatment. i don't think they all bloomed from the one spine met, i also think they were likely always there and just "woke up" -- who knows how. ...

Ok. I've never heard of that effect either. That's still not how mets work, they're not sleeping, they just take time to develop to a detectable size. That's how doubling works, it's exponential.

I hope things improve for both of you. Very difficult situation.
Posted 5/30/2017 4:03 PM (GMT 0)
Redwing...your response to Snowcake was well reasoned and excellent. Snowcake is understandably overwhelmed by the apparent rapidity of her Dad's cancer and has a right be angry that all of this is unfolding so quickly. While her anger may be presently misdirected towards the oncologist, her venting is what would all do.
Posted 5/30/2017 5:32 PM (GMT 0)
I'm very, very sorry to read of your disappointment Snowcake, especially as I think we are at the same hospital.

I don't have the knowledge to write about what should have been done but my own sense if that my husband's cancer (GS 9) is like a tiger that we don't want out of its cage. After surgery, we were told to stop taking hormones and we flatly refused. We knew adjuvant radiation was certain anyway. Since then, the research I've done appeared to confirm we made the right choice.

I've learned that unless you are in a clinical trial, care is limited to standards set by level one evidence. This means no ePLND or increased radiation dosages (standard in the US it seems) for sRT. I'm not sure, (others might know better) but I don't know if there is level 1 evidence for carboplatin chemo. We've been told "no" to adjuvant chemo because there is no level 1 evidence. If there is evidence that this chemo might have been beneficial but not offered by the hospital, it seems to me that there was an ethical obligation to offer you the choice of paying out of pocket elsewhere.

Please keep us updated on your Mayo visit and your onc's response.

I've reflected on accountability to outcomes and the effect it might have on care provided to men with very high risk cases. My guess is that the top cancer centers in the US (like MSK, MDA, Mayo) are in some way held to account of outcomes, or have a way of boasting outcomes.
Posted 5/30/2017 8:25 PM (GMT 0)

Staying Tuned said...
Redwing...your response to Snowcake was well reasoned and excellent. Snowcake is understandably overwhelmed by the apparent rapidity of her Dad's cancer and has a right be angry that all of this is unfolding so quickly. While her anger may be presently misdirected towards the oncologist, her venting is what would all do.


Of course. Venting is fine, we all do that and it is expected; it's a critical aspect of this forum. My intent was to provide some perspective to actually help. Hopefully, information to resolve misunderstandings can help reduce the anguish.

I've been here for about 4 years now, and have vented many times. I also appreciate perspectives that help me deal with what caused my venting; sometimes people don't want that.

This can all be overwhelming to deal with.
Posted 5/31/2017 12:30 AM (GMT 0)
To add to Redwing's excellent post, cancer needs to double 44 times from inception to death. At 33 doublings it is the size of a pin head. Some types of cancer, such as your Dad had are simply not curable with our current technology. If it had spread to his spine and could be identified, it was already throughout his body in places not yet identified.
You have benn given good advice to use this remaining time to enjoy your dad.
Posted 5/31/2017 1:39 AM (GMT 0)
The speech by Lucy Kalanithic on TedTalk struck a cord with me,

Our job isn’t to fight fate, but to help each other through, not as solders but as shepherds…….. "
Posted 5/31/2017 3:58 PM (GMT 0)

snowcake said...
anyway, the emergency room visit at least resulted in my dad getting chemo (his onc had said it's not an option but a team there decided that it is) he had his second cisplatin/etoposide combo today and will do another one tomorrow.


I think this treatment can help. In this presentation at the ASCO 2017 the combination of cisplatin and etoposide did help a group of patients with neuroendocrine cancer.

George
Posted 6/2/2017 12:49 PM (GMT 0)
thanks all. it has been a tough time. my dad is an inpatient so we're in the hospital pretty much permanently, been sleeping here etc. i want to be here every second of this.

i do think my anger at the MO is justified...he took a wait and watch approach for a very aggressive cancer and then didn't act when it became clear it had spread to the lungs and liver. he knew that on may 4th. he told my dad it was nothing serious and that he could take a trip.

my dad's liver is now so full of mets that if this chemo doens't work, he will likely not have other options (this is what the med onc told us) and that it will then be weeks-months left. this is devastating. just knowing that treating this earlier may have prevented the liver mets from progressing further (or at least slowed them down) and that if we'd started chemo the first or 2nd week of may when we found out, that 3 weeks later if it was failing, his liver would've still been in good enough shape to try something else. now it seems we won't have that option.

this is an unusually fast moving cancer. this was made clear to the MO from us and he promised he would take action as soon as signs of it spreading appeared. instead he waited.

sometimes MOs get it wrong. sometimes a couple of weeks is no big deal (most times) but in this case it has made a significant difference.

we went from being in a good position to attack early to a bad one where liver is extensively involved and may exclude us from other treatments which hinge on liver function being at a certain level. it also means we have lost the chance to go abroad to treat this as my dad is in no shape at all to travel - he can't even walk unassisted now. a couple of weeks ago he was dancing and singing. it has been that rapid and our calls and pleas to the onc even while this was happening were ignored.

anyway i'm grateful i have a space to vent. thanks to all for listening and please keep us in your prayers.
Posted 6/2/2017 1:41 PM (GMT 0)
Hi Snowcake,
I read your initial post like I do so many. But, I did not respond because I really did not know what to say. There are so many of us here that relied on our doctors to do the right thing and because we trusted them we find ourselves in a situation that has severe consequences. I am no different and I have felt the way that you do. You are right to be angry over how your dad was treated but I don't know what the answers are. Your state likely has a medical board and you could file a complaint. I thought of doing the same thing. I also thought about seeking the assistance of an attorney to file a medical malpractice claim. The window is very small. I think it is something like 1 year from discovery of the claim. In your case it would be 1 year from his diagnosis. I'm not sure if doing this would help your dad but it could prevent a doctor from making bad treatment decisions in the future.

As for your Dad, I am so sorry that you find yourself here. I am no expert on neuroendocrine cancer but I do know that it is difficult to treat. There have been some that have beat all odds and have survived it for many years but everyone reacts a little differently to treatment so it is hard to get a good meter on it.

I see so many advocates on this site and it makes me weep with happiness to know to the guys here that are suffering have someone by their side. You are one of those people. Wishing you and your dad all the best.
Posted 6/13/2017 5:24 AM (GMT 0)
thank you so much for those kind words, almost a 10. things are tough at the moment. today especially has been a tough day and it's so hard to see my dad go through this. he's done one round of chemo and we are praying he will be fit enough for the next one.

i'm still hopeful he can recover and chemo can help him at least shrink these mets and then we can hopefully get PRRT or immunotherapy.

the onc has said there is nothing else if chemo fails but i'm not gonna give up that easily. i am trying to figure out how to deal with the emotional toll this takes and not really sure how to go about it so far.

my dad is an inpatient and i'm here pretty much all day/night. everyone on this floor is going through their own cancer story and it breaks my heart. i wish this disease just didn't exist.
Posted 6/13/2017 10:20 PM (GMT 0)
>"the onc has said there is nothing else if chemo fails but i'm not gonna give up that easily. i am trying to figure out how to deal with the emotional toll this takes and not really sure how to go about it so far."

Have you talked with your Dad about what HE wants as the end of his life may be nearing?

You've probably seen this before, .....

www.pbs.org/wgbh/frontline/film/being-mortal/
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