I am new here
I am still trying to wrap my head around what all of this means....I am 45 and never thought that I would have to deal with this at this point in my life. Neither of my parents - who are in their late 70's have had colon cancer in their families. We have not told the kids yet - they are 10 & 11. They know something is going on - because I have been to the doctor so much and I have had the two surgeries. Up until now I have been fairly healthy - I used to only go to the Dr for well visits - I am going to have to get used to all of these appointments.
I do have a question...has anyone had a Nurse Case Manager assigned to them from their insurance company? I got a letter in the mail this week - letting me know that I had been assigned a case manager.
Thanks for listening. - Alex
Comments
-
sorry to meet you here.. but
sorry to meet you here.. but you will find alot of great advise here..
I had a case management nurse and I basically told her not call me. she was never able to help me with anything I needed.. I don't know which insurance company you have but I found this long distant nurse a real problem.. I used the advise of my dr.. and went with that.. and my own common sense..
Good luck as you start chemo and ask any questios you may have..0 -
Case Management Nursedmj101 said:sorry to meet you here.. but
sorry to meet you here.. but you will find alot of great advise here..
I had a case management nurse and I basically told her not call me. she was never able to help me with anything I needed.. I don't know which insurance company you have but I found this long distant nurse a real problem.. I used the advise of my dr.. and went with that.. and my own common sense..
Good luck as you start chemo and ask any questios you may have..
is a waste of time. I had one the 1st surgery - she called me, and basically it was more of a "courtesy" call thing - I almost felt that she was "checking up" on me or my doctors. I declined follow up calls, and told her that if I had any questions I would reach out to her. You may need to find out if this is a "requirement" of your insurance company; i.e. like some companies require a "referral" to see a specialist from your PCP.
The last thing you need right now is someone confusing you or making you doubt yourself or your doctors, or your treatment. So if it's a "choice" thing, my opinion is to decline.
You will be in my prayers (as all are on this board)
Hugs to you0 -
hello
Sorry to have to say hello here but you will find a lot of good people here. I hate it even more when there are young children involved. It sounds like your Dr is moving quickly which is good. The case nurse is okay but they seem to call at bad times. I pray all goes well during chemo. Jeff0 -
Not a case nurse...
Hi Maixe, as with others glad to meet you, just too bad it's here. A few months after my dx, I was hospitalized when my white blood cell count crashed. My insurance company assigned a palliative care team (at a $45 co-pay!)and as soon as I found out I was wasting that money on someone who really did nothing for me I fired them.0 -
JoeMetz here with my two cents
Hello Alex
Bummer to meet you here, but your note hit me between the eyes.
first, let me say that i am a lot like you. I am 48. (was 47 when diagnosed in November 2011). I have colon cancer that has spread to the liver and had nearly 30 tumors in the liver. (so Stage IV). My parents both 78 and 79 at the time and we had ZERO colon cancer amount either side of my families.
the first surgery was in December (just before Christmas) No cancer doesn't effing care what time of the year it is, or how old or young you are). the treatment you're about to receive seem to sound just like what i received.
(FolFox 6, Leucavorin, Oxalyplatin, 5-FU and my treatment included Erbitux)
you'll receive the drugs through your port most likely on a Tuesday and then they put the pump on you (a computerized pump which will include some 5-FU) Yes, there truly is a cancer drug called FU.
I received 24 weeks of this stuff. And, every 8 weeks they did another CT scan to see how well it was working. For me, it's working well... 80% of the cancer is reduced or gone and NO new cancer anywhere else and no cancer growth). But, we still have a lot of work today. I am having a reconnection of my colon surgery next Thursday and they'll remove (or take down) the Colostomy bag that they added to me last December)
Now that i've set the stage that we have some similarities... I have to focus on one key issue with your post. It's your two kids.
I have four kids (ages 20, 18, 16 and 11)
within 5 days of being diagnosed, we had dinner with the kids and I shared the news. (my wife and I discussed how we were going to handle it and how much we should say on the first day)
I just stated that I'm sick, and that it is colon cancer which had spread to the liver. I explained how the chemo what chemo is and how it kills fast growing cells and that i was going to fight like hell to kick cancers ****, and that most likely Mom and I will need your help. (need our kids help) so we kind of put it in their court, and they asked what they can do?
the conversation went very well... and over the following days, weeks and months they each had several questions. some questions they asked me, some that they would ask Mom.
but, we treated it as "they need to know, and we need to be honest and never hide anything". I also found my 11 year old and 16 year old on WebMD.com so they could learn more. (some good in that, some bad... especially the statistics... but we answered their questions to the point and right away.
I received many compliments from my kids teachers and coaches that our kids were dealing with this very well, AND they were able to speak intelligently with them about their dad being sick.
so... why do i say all this?
you most likely know by now... TELL YOUR KIDS.
they are not stupid... they are actually very smart at 10 and 11 years old.
and, the Truth and Knowledge is so much less stressful than the "unknown".
also if you tell other people in your community... sooner or later your kids will hear about it from their own friends, instead of you.
its okay if your kids see Daddy being scared or frightened by this illness. You're on a roller coaster for your health and it's going to have some really good stuff with some really bad stuff. (You'll understand that statement in a few months)
Cancer will change you, but it doesn't have to define you.
You define you.
think about someone you read about that got killed in a car crash in the past 48 hours... they didn't get the chance to re-prioritize their life... they didn't get the chance to be in awe by their kids... a new kind of awe that makes you appreciate every waking moment of your day. you and i might not live to be 70, but we will be able to enjoy life like no other time.
anyway... that's enough babbling from me.
I hope this helps and doesn't hurt... there are so many here that will help you in any way possible. Some of us speak pretty frank while others just lurk and provide awesome input whenever they post.
i wish you the best and my prayers are with you.
Joe.0 -
Hello Alex
Yes, I too am sorry that your condition has brought you to this site, but it seems as if you are healing from your surgery and travelling. How wonderful that is. You will find the folks on this site to be wonderfully supportive and knowledgeable as you go forward on your journey. There are many kind and helpful individuals who have been just where you are now. Ask any questions and concerns, explore any fears ... there is always someone to lean on here.
With regard to the case manager, my husband and I were contacted as well early in his treatment. The individual was employed by our insurance company and it all seemed odd to me so I researched what this type of service was. I learned that it is often offered, but you do not have to accept. In our case, I wanted no one acting as a middleman between my husband's medical team and us. I also could not shake the feeling that perhaps this was the insurance company's efforts at controlling costs and that by being involved they might try to influence treatment decisions. Seems a conflict of interest problem to me.
Wishing you the best,
Cynthia0 -
sorry
i am so sorry to meet you here, i have no insurance to give a case nurse so i am no help there but i am 34 and stage 4, my kids know i am very sick that is about all.0 -
Welcome
Welcome to this group -- and sorry you have reason to be here.
I was 44 when I was diagnosed -- Stage III rectal cancer (one node affected). My kids were 10 and 12. Each family is different, but my husband and I decided to tell ours. As Joe said, kids are smart -- they know something is up and perhaps their fears are even worse than the reality.Ours coped really well (although I had to get them a dog!). They are 19 and 21 now!
I'm afraid I have no experience with a Nurse Care Manager. I sure wish someone had given me a full-time administrative assistant the dayy I was diagnosed! -- there's so much paperwork and things to manage.
What sort of chemo will you be on? The folk on this board have experience with practically everything! and may be able to help with information on side effects, etc.
Glad you worked in that beach vacation! Smart move!
Best of luck to you
Tara0 -
I talked to my husband thisjoemetz said:JoeMetz here with my two cents
Hello Alex
Bummer to meet you here, but your note hit me between the eyes.
first, let me say that i am a lot like you. I am 48. (was 47 when diagnosed in November 2011). I have colon cancer that has spread to the liver and had nearly 30 tumors in the liver. (so Stage IV). My parents both 78 and 79 at the time and we had ZERO colon cancer amount either side of my families.
the first surgery was in December (just before Christmas) No cancer doesn't effing care what time of the year it is, or how old or young you are). the treatment you're about to receive seem to sound just like what i received.
(FolFox 6, Leucavorin, Oxalyplatin, 5-FU and my treatment included Erbitux)
you'll receive the drugs through your port most likely on a Tuesday and then they put the pump on you (a computerized pump which will include some 5-FU) Yes, there truly is a cancer drug called FU.
I received 24 weeks of this stuff. And, every 8 weeks they did another CT scan to see how well it was working. For me, it's working well... 80% of the cancer is reduced or gone and NO new cancer anywhere else and no cancer growth). But, we still have a lot of work today. I am having a reconnection of my colon surgery next Thursday and they'll remove (or take down) the Colostomy bag that they added to me last December)
Now that i've set the stage that we have some similarities... I have to focus on one key issue with your post. It's your two kids.
I have four kids (ages 20, 18, 16 and 11)
within 5 days of being diagnosed, we had dinner with the kids and I shared the news. (my wife and I discussed how we were going to handle it and how much we should say on the first day)
I just stated that I'm sick, and that it is colon cancer which had spread to the liver. I explained how the chemo what chemo is and how it kills fast growing cells and that i was going to fight like hell to kick cancers ****, and that most likely Mom and I will need your help. (need our kids help) so we kind of put it in their court, and they asked what they can do?
the conversation went very well... and over the following days, weeks and months they each had several questions. some questions they asked me, some that they would ask Mom.
but, we treated it as "they need to know, and we need to be honest and never hide anything". I also found my 11 year old and 16 year old on WebMD.com so they could learn more. (some good in that, some bad... especially the statistics... but we answered their questions to the point and right away.
I received many compliments from my kids teachers and coaches that our kids were dealing with this very well, AND they were able to speak intelligently with them about their dad being sick.
so... why do i say all this?
you most likely know by now... TELL YOUR KIDS.
they are not stupid... they are actually very smart at 10 and 11 years old.
and, the Truth and Knowledge is so much less stressful than the "unknown".
also if you tell other people in your community... sooner or later your kids will hear about it from their own friends, instead of you.
its okay if your kids see Daddy being scared or frightened by this illness. You're on a roller coaster for your health and it's going to have some really good stuff with some really bad stuff. (You'll understand that statement in a few months)
Cancer will change you, but it doesn't have to define you.
You define you.
think about someone you read about that got killed in a car crash in the past 48 hours... they didn't get the chance to re-prioritize their life... they didn't get the chance to be in awe by their kids... a new kind of awe that makes you appreciate every waking moment of your day. you and i might not live to be 70, but we will be able to enjoy life like no other time.
anyway... that's enough babbling from me.
I hope this helps and doesn't hurt... there are so many here that will help you in any way possible. Some of us speak pretty frank while others just lurk and provide awesome input whenever they post.
i wish you the best and my prayers are with you.
Joe.
I talked to my husband this morning. We are going to talk to the kids this afternoon. You are right - at ages 10 & 11 - they are old enough and smart enough to be a part of this. I know that I will probably need their help from time to time - and I don't want them thinking the worst.
I'll let you guys know how the discussion goes.
Alex0 -
I am going to be getting thetaraHK said:Welcome
Welcome to this group -- and sorry you have reason to be here.
I was 44 when I was diagnosed -- Stage III rectal cancer (one node affected). My kids were 10 and 12. Each family is different, but my husband and I decided to tell ours. As Joe said, kids are smart -- they know something is up and perhaps their fears are even worse than the reality.Ours coped really well (although I had to get them a dog!). They are 19 and 21 now!
I'm afraid I have no experience with a Nurse Care Manager. I sure wish someone had given me a full-time administrative assistant the dayy I was diagnosed! -- there's so much paperwork and things to manage.
What sort of chemo will you be on? The folk on this board have experience with practically everything! and may be able to help with information on side effects, etc.
Glad you worked in that beach vacation! Smart move!
Best of luck to you
Tara
I am going to be getting the Folfox...6 months worth - every 2 weeks with the pump for 46 hours after the infusion. I am starting to get a little anxious this afternoon... my 1st treatment is tomorrow morning.
I am still on the fence about the Case Manager - it does seem like a conflict of interest - but I read through the paperwork and I can refuse her help at any time.
As for the kids - my DH and I talked this morning - and we are going to talk to them this afternoon. They know that I have been sick...they just don't know what it is and that I will be going to get treatment for the next 6 months.
Alex0 -
You Sound Like Me
Alex, I was 49 when Dx at stage 3B. Total shock. I had the surgery 1/31/12 and I am starting on chemo #10 of 12. I have had to deal with alot of chemo side effects (neuropathy, dirreaha, weight loss / 60 pounds). what I can say is you will make it through. This site is great for support and please tell your children - they know more than you think. Let them know this is the process for you to get better. As chemo progresses you will be very tired - they need to know that also so they are not nervous. Best of luck, you are in my prayers. You will feel like you are on a roller coaster and cannot get off at times, but trust me you will make it through! Alice0 -
Alex, may be of use as you are Stage 3
Alex, I know you have a lot to absorb, but as you have stage 3, I thought the comments of Dr Saltz would be of interest. The part of the video which applies most to you starts at 8 minutes as he relates a study pertaining to habits of Stage 3 patients. Probably good for patients of all stages.
Colon Cancer Risk Factors - Sloan Kettering
good luck on your journey0 -
I had one because I was using the United HealthCare Cancer Resource Services. She checked in with me, reminding me of services that were available to me, encouraging me to go for mental health support if I needed it, and to call on her at any time. I thanked her, but never actually called her for anything.
On the other hand, I also had a case manager because I had some problems with some of my providers (the nursing service that handled my 5FU pump, to be specific. That group may be different from the clinic/facility that handles your clinic infusion portion of chemo.) This case manager proved to be very helpful, allowing me to fire the first service, and switch to another, even tho the cost to the insurance company was higher. She also arranged for me to get equipment at no cost (a blood pressure cuff, as my bp needed to be monitored, as it had gone up.)
Ideally, the case manager wants you to get the best care, because ultimately, proper care will be less expensive for the insurance company.
Hang in there - this is going to be a rough roller coaster ride. However, you and your family will see you through it. I was stage 4, and have now been in complete remission for almost 5 years.
Alice0 -
Hi Alex
I'm so sorry that you have to go through this but you've made a good decision to come here. There is so much sharing of information....better than any other place I've found.
Good luck with your chemo
0 -
Welcome
I too had a Nurse Case Manager assigned to me from the insurance company and found the whole service useless.
Sorry to meet you this way, but hello and welcome. I am a Mom also, to two 7-year-old girls and was dx in 2009 with Stage 3 rectal cancer and currently have No Evidence of Disease (NED).
We are all here for you~
Tommycat0 -
Hi Alex, also sorry you have
Hi Alex, also sorry you have to be here, but you have come to the right place.
You have already received such great advice. I will add that i had a nurse mgr. She was a blessing. Sometimes i just needed to talk to someone that I didn't have to worry about upsetting. She kept me informed about options open to me and also checked to see if I was having any problems with anything. Hospital, dr. getting meds. etc. So give it a shot and see what happens.
The best of luck to you,
Judy0 -
Welcome
Welcome to the board. It's a hard thing to get your mind around all that is going on and it will continue to be a whirlwind of appointments and tests for a bit yet. When it comes to children, it's always difficult to discuss this with them. This is a great group of people and if you have any questions, please don't hesitate to ask. Can't help you with the nurse situation, but you could see with each contact you get, if you don't like them, then fire them. Ultimately it is your decision in the long run how you want to handle things. Ask your doctor for some lidocaine for your port, and put a bandaid on it (port) so it doesn't rub off on your clothes.. It numbs the area if you put it on about 45 minutes before infusion. Hope all goes well with your treatments.
Kim0 -
cancer twins
We could almost be cancer twins a year apart. I was 52, dx June 10 surgery June 13 of 2011, 4 lymph nodes positive, Stage 3B chemo..couldn't do the pump though so got to enjoy xeloda! youll find lots of good information here. I have grandchildren who were 9 and 12 and they were a tremendous source of joy and help during my chemo. This is a journey none of us wants to make but this site will be of great help and comfort to you. Keep us posted and good luck tomorrow. Rest while you are getting your treatment, my oncology nurses are the best and they explained every little bag they were hanging on my pole and what I might experience when it hit my veins, can't remember which one it was but it was toward the last bag of the day and they would always warn me... you may feel like you've peed your pants! every time.. it did! Will be thinking of you tomorrow. 0
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