Getting the actual Prognosis with his Life Expectancy
On January 28 we were told my FIL had cancer, and if you follow my Threads you know whats going on. My FIL has Stage IV simoid colon cancer with mets to Liver, Lung, Sleen, Bone, Brain, Stomach and Lymps. We have never been told by neither Oncologists, nor Radiation drs my FILs actual life expectancy. We were told that it didnt matter, life is short for anyone, just enjoy it. So we have been. Yesterday I get a call from a palative nurse ( I think thats right) from our local VA program. (Long story short my FIL is a veteran and he wasnt signed up with the VA until just recently after his original hospital admitance) Anywho, earlier this month he went and had a compete physical with them so that he could possibly follow up with them. Well they called and set up a meeting for my FIL and his family. I took the call. She told me that palitive care is not hopice. that he could still recieve his treatments through the local cancer center ( he cannot physically make the VA cancer center as the closest one is 2 hrs away and he cant take that drive). She informed me that his prognosis was less than 6 months. something i was prepared to hear, but shocked since its already been 3 months. Well next week they are going to go over all this info, signs/syptoms hes already had/has and what the future looks like. Well its something we all need to hear, however HE (my FIL) will not be ready. He doesnt totally understand how severe his cancer is. He just doesnt want to believe it. He has made several conversations on him being in complete remission. God does work in mysterious ways, it can happen. However if you see his health, his well being, his masses (he has lost so much weight that some just stick out of his body)we as a family know that its not likely. Im just concerned he is not ready for this conversation. He trully is in denial, and often lies about his symptoms to the drs so they in his mind can just all go away. After all he has admitted that he knew he had been sick for a long time, but didnt know it could spread apparently. Im worried about how this is going to affect him, will he just get angry? mad? breakdown?giveup? Families who have been through this, can you offer advice how to handle this conversation. She did tell me that the drs are prolly going to advise him at this time that hospice is a great option and offer him helpin that area, well i already know that he is going to decline that. He wants treatments, he wants his body the way it was, I just dont see him saying okay. and thats his choice to make, who am I to say otherwise. Yesterday was his scheduled day for his 5th Folfox treatment, but was not able to get it as his whiteblood counts were to low and his weight loss was to much since the last round. He gets to skip this round and wait 2 weeks for his next appt to see if his counts got better. So for all you cancer patients/or family members, how do we get him there, how do we get him to talk about it, and will he except it?? Thanks, one concerned DIL
you need to be straightforward this is what you need to do/ the consequences-the best person to get through to him would be the doctor he trusts most. have a schedualed conference with the family and him and have the doctor bring up the concerns and take it from there.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.
To some extent, it is a "guy" thing. A lot of men, especially men of earlier generations, were brought up to deny that anything was wrong, not to cry, to tough it out. And frankly, it is tough to admit, even to yourself, that you are not going to live to the ripe old age that you expected. In talking to my doc about all this, he said that some of his patients-including me-want to know exactly what the score is, others not at all.
I came to peace, to the extent that you can make your peace with my prognosis, back in 2010, but my wife and daughter, still not so much. It does help that I have now outlived my initial projected survival period. In fact, since I am more than five years from diagnosis, the medical profession would consider me a success, even though those wily tumors are still out there and will get me in the end.
DX with Lung Carcinoid Tumor 12/04
Double Lobectomy 3/05
DX with Rectal Cancer 12/26/07 Merry Christmas!
Rectal Resection 3/08, permanent colostomy. Stage 2C
More chemo 5/08
Chemo fries bone marrow, 9 days in hospital isolation 7/08
Recurrence confirmed in pelvic region 12/09
Tumor radiated with Cyberknife treatment 3/10
Recurrence/metastasis in pelvis/abdomen 11/10
Xeloda/Avastin 12/10 to 01/13
Progression to lungs found 1/13
Erbitux 01/13 to 01/14
Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
Restarted Erbitux, lower dose 12/13
Kidney function dips again, chemo suspended again. 2/14
New chemo regimen of low-dose Irrenotecan started 4/14.
Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
Lung biopsy confirms that nodules are metastatic, enrolled in clinical trial at Huntsman. 11/14
Sounds like a lot of fun, doesn't it?
Wow Buzzard, happy to hear you made it through 5 years so happy for you. Its these stories, the comercials, stories and such that gives my FIL hope. He told me a story of someone who had breast cancer and was told she had 6 months and she is still a survivor many many years later. He does have a mass amount of tumors. I wrote some down back in January, however he hasnt gotten any recent tests since his chemo. Liver biggest mets 5.5 x 4.8 (x2 that size) and a 8.6 x 5.8. l. lungs biggest were 6.6 x 4.6 and 4.5 x 3.7. Brain had 3 of the size of 2mm, spine was effecting T2,T3,T4,T10, and L1. Abdomen was a 6.1x 3.8 (also many many more that they couldnt count) there were other places too that he had them, but for some reason i only wrote those down. Since he has lost weight his lymps behind his ears are popping out and noticeable along with the large mass behind his right shoulder blade. cancer just isnt fun. He is a typical guy. never went to the dr, never cared. he thought he was just an ordinary healthy guy. The crazy thing is he never ever showed emotion when first diagnosed. There was a benefit for him weeks later since they didnt have any inital medical insurance. He was more emotional about all the people who came and supported him, than knowing that he had cancer. (emotions that he lets us see anyway). He is just very determined to fight this. He lives in his recliner and only goes to the kitchen, bathroom and bedroom. anytime he leaves the house he is whooped. He is 64. The VA said they are familiar with "his type" of guy. Hes not the first and wont be the last to be in denial, to refuse to let cancer win, to not give up, to pretend he has no symptoms, to let his family believe hes not even sick. TRULY its a heart breaker. Im glad there are men like you who have fought it, who can fight it
I hope and pray that you will get some answers after the doctors meet next week. I think a family conference is a great thing because it gets all the info to everyone at the same time...plus nothing can get lost in translation. Your FIL may surprise you...or he may react exactly as you think (which is sometimes a blessing because when everything feels upside down it's a constant that makes you see he is still him...if that makes any sense). I pray that he will accept what he hears and that you all get to enjoy your time with him...however long that may be. I pray that his pain will decrease as well. I totally understand your need to know how much time...I feel exactly the same with my mom, just try not to let it consume you, it'll drive you nuts (I'm speaking from experience). Thoughts and prayers to you
Buzzard: I am in the process of trying to outlive my original prognosis, which sucked bigtime. The good part of doing that, and still feeling relatively pretty good, is that I feel every day like I am playing with house money, and I better damn well enjoy every bit of it. So far so good. And, especially, good for you!
Originally Posted by Buzzard
Otherwise, I generally agree with your comment about some of this being a "guy thing" in terms of not wanting to admit an illness, etc. I have managed to overcome some of that, but know a lot of guys who never do.
Anyway, DIL, you sound like you are a blessing to your father in law, and he does sound pretty tough. My guess is he really does know down deep that things are not going so well, but he just is afraid to admit it to the rest of you, because by doing that, you in some ways make it more real. And that is truly scary.
Good luck with this. Lots of prayers and good thoughts for you and the rest of your family.
64 yrs old
March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
3 rounds of CHOP unsuccessful.
Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
Autologous bone marrow transplant in November of 2012.
17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
One year post transplant check-up: Still fine; NED.
18month post-translant scans, etc. All fine, save a bit of arthritis.
11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
Relapse confirmed/ started every 3 week brentuximab
Allo transplant in Feb 2016.
100 day post transplant scans in June 2016 fine.
Is there an option for him not to know. My BIL (17 yo) has refused to hear most of his details. He has just had a recurrence of his cancer (not cc) and has no idea that the drs believe its terminal and has months at best to live, he knows its bad and he needs chemo but he is looking at life after cancer. It's not the way I would want it but its what he has chosen.
F 29 with two daughters 4 yo and 18 months at Dix
Dx 13 Nov 12 stage 3C cc (T4N2M0, tumour attached to cervix and uterus)
Dec 12 - Jan 13 chemo/rad
Feb 13 - extra round chemo
16 Mar 13 resection, temp ileostomy, full hysterectomy (no tumour found, 0/10 lymph nodes had cancer) NED
15 Apr 13 first round of 4 of chemo to stop recurrence
13 May 13 completed 4 of 5 treatments only due to anxiety
10 June 13 new chemo regime 24/7 5FU for two weeks
Some people want to know so they can plan and get some things done. Others feel if they don't get things done they won't die as soon. I guess everyone has their way of coping. Kenny wanted to pursue anything this last bout of cancer, he did plan and get many things done for (mom), me. When he started getting so weak he tried some herbal mushroom stuff, only took it twice, but had to try, he wanted to live, but at the end he accepted and his passage was long but peaceful with angels in his room. You do the best you can and go on. A family meeting as Sheila talks about sounds very good.