Coastal Radiation Oncology at Mission Hope Cancer Center

We just started the long process of coming here since finding out last month that my 43 yr. old Vegetarian wife has Colon Cancer… a great shock. It is a life changing event that we are finding out, the hard way. is a process that a Cancer Survivor & their family will have to come to terms with.
You then cry… alot…
For those who may not know, you have to really do it yourself here, despite this claiming to be a «Cancer Center». The care here is fragmented, and there is seemingly reluctant & disjointed communication between the Surgeon, the Oncologist, the Marion Hospital staff, the pathologist, the nice people who are supposed to help give you support, who we have yet to get help from (i.e. Social Worker), the CT/​PET scan staff, and finally both our insurance company (Anthem Blue Cross) & us.
Here is what you may go thru:
1) Have an urgent Colonoscopy, after 3 months of poor digestion, episodic severe pain, & bleeding… which was mistakenly attributed to just Hemorrhoids. Both the urgent care on Madonna Rd.& the local French Hospital ER visits were not helpful & no one suggested that Cancer was even a remote possibility.
Love & support spouse!
2) Get the shocking news that not only you have Colon Cancer, but it since it is almost totally blocking your intestine, emergency/​urgent surgery needs to be done ASAP. Call the referred surgeon ASAP & beg for an appointed… thank heavens it was the next day. The surgery was the day after that after two bowel preps & no food for many days.
Deal with shock & pack for a 5 day stay!
Deal with getting off work on a emergency FMLA!
3)See the Surgeon, who was fantastic & saved my wife’s life. The surgeon explained things very well & we both felt shocked, but comfortable with his choice to operate ASAP. He stated that even without the bowel obstructing, many people who wait too long for their 2 – 3 opinions, do come back to him with stage 3 – 4 cancers. The prognosis for those are far worse than Stage 1 – 2.
Deal with delaying shock & crying
–get ready!
4)Have Surgery, resection, & anastomosis. Thankfully have great surgery results. Have ongoing battles with poor care as an inpatient at Marion hospital. Poor basic care (since they did away with Nurses Aids… so DIY washing your face, unless your Caregiver knows nursing/​medicine), pathetic non-​standard pain mismanagement, proper nutritious Vegetarian diet took a near miracle (and lots of phone calls to Nursing Admin.) to get correct after 3 days, pathetic miscommunication between all staff (due to agency/​different nurses mostly, miscommunication between all levels of staff… no visible nursing care plan… goals were not done, etc.), a three-​stoogies type of discharge planning that I had to call the corporate HQ of Dignity to get meetings with the directors of nursing to help. Have spouse buy your own vitamins, meds, & Ensure, at Food-​4-​Less, since they are too stupid to get them for you… despite repeated begging.
Deal with «modern» healthcare!
5) Insist on getting pain meds right before a 45 min. drive home. Insist on proper home aftercare with visiting PT & an RN.
6) Arrive home to care for spouse, get stack of mail which includes Anthem’s Utilization Management’s draconian denials of care (which over the phone they then deny that they are relevant & just need more info from the hospital & just CC’ed us).
7) Remember to call to Set-​up follow-​up & staple removal. If you do not call, it will not happen. Have a «fight» to get an appointment with an Oncologist (after seeing the surgeon) before the surgeon sees you again. Fighting to get the medical records from one floor (the Surgeon) to the next (the Oncologist) & sign even more HIPPA forms. Take note that every office has an Inc. after the names!
Complain to Mission Hope’s Cancer Center Directors staff about poor coordination, without any call back, nor any follow-​up with a Social Worker.
Deal with fragmented care!
8) See the competent young Oncologist who does a great job explaining many options, but has to wait for the delayed Genetic Testing on the tumor & either a proper CT, or a PET scan to get more info. Incidently, the hospital pathologist did have the superior competence to send a tumor sample to a genetics lab in the SF Bay Area for testing. But since no one communicated this to us, it was a shock that some lab billing office hundreds of miles away from us called to ask to bill us around $ 300+ dollars (10% of a $ 3−4k test). Since I had no idea who these people were, I check the Net & was very happy to find out that they were doing this high tech test, that improves the accuracy of the prognosis by 10% or more… and can tell if it is Lynch Disease, which can cause Cancer in many relatives.
9) PET scan next & the great unknown
. of a lifetime of loving, waiting, praying, & checking
& trying to coping
…& trying to appreciate life moment by moment!
Here:
Is Love :)
& Despair. :(
& Hope :)