My mom's boyfriend was diagnosed with prostate cancer earlier this year and he was supposed to get surgery scheduled to remove it. It was stage 2 I believe so fairly treatable but they haven't been able to get the surgery scheduled. I guess due to the doctors not accepting his insurance or something.
It keeps dragging on and I don't understand why it's taking so long. It's a serious thing that needs done... and now they are saying they think it may have spread and needs another MRI.
If they did the surgery already it wouldn't have spread..... I feel very frustrated and don't know what to do or how to help. Anyone else been through this or seen this happen? What should we do? I feel like he is falling through the cracks and I can't believe this is allowed to happen.
As a general observation, it's not uncommon for patients to hear the word "cancer" or "tumor" and assume the best thing is for immediate surgery. When they don't get immediate surgery, they often seem to misunderstand this as being an insurance issue.
Agree. I was going to post something similar, I.e. it can be difficult for patients to know what's really falling through the cracks as opposed to appropriate triage of cancer surgeries and/or just the regular/appropriate monitoring and handling of the medical situaton.
OP, I had a family member who was called by an office staff after a recent visit and told that they needed to see a certain surgical service because they needed surgery. What is dumber/scarier is that a pre-op work-up was ordered prior to even having contact with the surgeon or being seen by anyone at the surgery practice--and this was not emergency in any sense of the word, in fact it is something that under the circumstances no one in their right mind would do without a bona fide surgical consultation and discussion.
My point is that between the right hand not knowing what the left hand is doing, patients generally not having knowledge of how offices coordinate things, and you getting information second or third hand, there's a decent chance that nothing is actually falling through the cracks here. But, cancer is a scary word for people and your family has a right to know WTH is going on. Your mom's S.O. needs to be persistent with calling until he gets answers about what the plan is and how much of an urgency this is.
Thank you for such an insightful post, I'm sure the OP found it quite helpful.
I understood the intent of that precipitating comment. I've been dealing with the realities of the American HC system for 6 months for myself. So frustrating with the runaround!
Specializes in ICU/community health/school nursing.
20 hours ago, amoLucia said:
It's the timing right now. PP RNperdiem summed it up so well. I speak from first-hand experience. I was newly cancer-diagnosed this May. It has been a logisticalnightmare trying to orchestrate & fine-tune all the diagnostics (CT, nuc stress test), providers (incl gyn, onc, onc rad, cardi, PMP) clearances, insurance, laboratory, dates, medi-amb transportation). I'm treating with a well-known, respected cancer center with 3 locations and all 3 are booked solid! So doing all this has taken the patience of a Saint, which I am NOT. I am TENTATIVELY sched next week to actually BEGIN the rad onc tx protocol. That's 6 months! And I still have all my other health and home care issues to deal with.
Patience of a saint....hang in there. Best wishes for you for this all to come together with speed, and for your healing.
Patients can order their own blood work now thanks to the lobbying Theranos did in AZ. I go through ultawellness, Quest does the draw, it's pretty cheap. Rising PSA, AFP? Blood work in the mean time might help ease his mind if nothing else.
I actually had something where I couldn't get a dx. All my symptoms could have been the PCOS wiki page, but I had massive pain down my legs. Literally anything I said was just in my mind and that I was depressed. I ended up going down to Tijuana for weight loss surgery because I was getting so overweight and hairy in the span of a year. Anyways, the doctor who performed my surgery (which went great, $5000 for belly button incision sleeve) suggested I get an abdominal MRI beforehand and the radiologist told me, "your ovary is size of an orange" I ended up getting my stomach surgery then flying back and having surgery to remove the ovary done about a month later for $1800 with a doctor that the radiologist recommended. All of my medical care there was great, from all 3 facilities. Back to 115lbs, acne is gone and after about $600 in electrolysis, back to normal.
Yesterday, 11/3, was 6 months, to the date of my new CA dx. Yesterday I finally had my last pre CT scan, and now have my abd 'tatoos'. So I am now ready to start my radiation in 2 weeks. On May 4, I would have been 'thrilled' to have had a TAH done with my D&C. But due to Covid times, the TAH was considered elective. So then the delay began to negotiate all the fine minutiae leading to my appts yesterday and my rad start.
It was NOT for any LACK of trying! With 36+ yrs nsg, I considered myself somewhat knowledgeable re fine details - to trouble-shoot where & when I could.
Going forward, this is Plan B. It's taken a lot of blood, sweat & tears to get this far. And I've got a way to go still.
The HC system is just as formidable as my diagnosis. That's saying a lot!
Yesterday, 11/3, was 6 months, to the date of my new CA dx. Yesterday I finally had my last pre CT scan, and now have my abd 'tatoos'. So I am now ready to start my radiation in 2 weeks. On May 4, I would have been 'thrilled' to have had a TAH done with my D&C. But due to Covid times, the TAH was considered elective. So then the delay began to negotiate all the fine minutiae leading to my appts yesterday and my rad start.
It was NOT for any LACK of trying! With 36+ yrs nsg, I considered myself somewhat knowledgeable re fine details - to trouble-shoot where & when I could.
Going forward, this is Plan B. It's taken a lot of blood, sweat & tears to get this far. And I've got a way to go still.
The HC system is just as formidable as my diagnosis. That's saying a lot!
I had personal experience. Removal of prostate is common (called radical) and is an overnight operation. Afterward, sex is never the same (worse) and impotence can occur. Waiting and monitoring it is acceptable in early stages...if it has not spread. Depends on the PSA number and doctor's exact prognosis. Without insurance, it is expensive yes but not as much as other surgeries. Is it possible that he can make a financial deal with the hospital (and shop around) to pay most or all of it right away? My doctor asked for my check while I was recovering the day after! Anyway, he should be writing this question, not you. There are probably support online groups that will advise him better. Get a very experienced urologist with a high success rate.
I work in appeals. If the patient is spending time appealing for a gap exception to use physicians outside his network, that can also eat up some time. And if there are in-network physicians that provide the same services in the geographic area who can see the patient in a reasonable amount of time, then it is highly unlikely that a gap exception will be approved without a true network deficiency (like with prosthetic eyeball makers - none of those ocularists are ever in network, seriously). Might be a good idea to get a referral to someone who accepts his insurance and drive on.
JKL33
7,044 Posts
Agree. I was going to post something similar, I.e. it can be difficult for patients to know what's really falling through the cracks as opposed to appropriate triage of cancer surgeries and/or just the regular/appropriate monitoring and handling of the medical situaton.
OP, I had a family member who was called by an office staff after a recent visit and told that they needed to see a certain surgical service because they needed surgery. What is dumber/scarier is that a pre-op work-up was ordered prior to even having contact with the surgeon or being seen by anyone at the surgery practice--and this was not emergency in any sense of the word, in fact it is something that under the circumstances no one in their right mind would do without a bona fide surgical consultation and discussion.
My point is that between the right hand not knowing what the left hand is doing, patients generally not having knowledge of how offices coordinate things, and you getting information second or third hand, there's a decent chance that nothing is actually falling through the cracks here. But, cancer is a scary word for people and your family has a right to know WTH is going on. Your mom's S.O. needs to be persistent with calling until he gets answers about what the plan is and how much of an urgency this is.