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Wants to keep it a secret

camillez
Posts: 14
Joined: Nov 2014

My boyfriend is 21 years old and has just been diagnosed with stage four kidney cancer.  His doctors are impressed with the state of his health however and gave him 2 years to live without treatment which is very uncommon for stage four from what I've been reading. They have prescribed him an 18 hour long laser surgery to get rid of the kidney tumor and the smaller nodules that have spread to his intestines, follwed by either radiotherapy or chemotherapy. They said they think they can get rid of the cancer. This makes me happy and think positively but also nervous because it goes against what I've heard and read about stage four kidney cancer. 

I am the only one he has told, he refuses to tell his family with whom he lives and literally has no support. He is even planning on going for surgery alone. He is very strong and taking full advantage of his days, his friends, his family. He is serious about getting his exams, taking his medication, seeing the doctors and planning for surgery, but I feel like he is still somewhat in denial. Doesn't he really need someone there? I am saving up money to go and see him but I know for sure I will not be able to make it there in time for the surgery.

I love him so much and want to be a source of positivity and support for him. I try my best. But I am also far away and the only person he is giving medical details to, so I fear that I will become his only source of sadness next to the doctors. I want him to feel like I respect his decisions but I am truely afraid that not having his parents involved is a big mistake. I almost want to tell them myself.

I have never experienced cancer first hand before. I was wondering if some of you could give me some advice on how to talk to him and help him through this as much as possible.

I would really appreciate your time and help. I don't know who else to go to.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Camillez,

I am so very sorry to hear about your boyfriend, he is so young to be suffering this way. With him not wanting to talk to anyone must be difficult,  I wonder if he doesn't want to tell anyone because it will make it more real, also perhaps he doesn't want all the attention and worry it will cause. It is a lot for both of you to carry on your shoulders. The point is how can his parents not know, he will be in hospital for a while and need someone to help him post op. Far better to tell his family now allowing them to work through the process with him. To let his family find out belatedly will cause them more anguish, they will be wracked with guilt that they weren't there when their son needed them the most!

Would your boyfriend be willing to speak on here, perhaps we could help:)

 

Let us know how you get on, all the best to you both!

 

Djinnie x

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Camillex,

My husband is 66 and he was diagnosed with Stage 4 Kidney Cancer in October 2011. When he was diagnosed, I too researched and googled and drove myself insane with all the negative information I found. First thing you need to remember is info on the internet is not current; it's old and outdated. Your boyfriend doesn't have an expiration date.

If your boyfriend is confident about his doctors, that's important. Much progress is being made in kidney cancer and his doctors seem to  have a game plan to beat it. Hopefully he will open up to his family, but do all you can to support him right now. Have faith in him and his doctors.  

 

 

 

camillez
Posts: 14
Joined: Nov 2014

Thank you Djinnie and Alice, 

Your responses were very kind and comforting, they help me calm myself down when I feel out of my mind.

I have continued trying to persuade him from afar. I've given him so many reasons why he should tell his parents. He says he understands them all and realizes that his decision is a bad on but that for now this is how he wants it. 

He doesn't want anyone at the surgery even though he will be under for a minimum of 18hours. He just has planned on having an aquaintance who does not know what he will be in the hospital pick him up to drive him halfway home.

I have tried to see if i  can come up with enough money for a quick trip to be there when he wakes up but it seems impossible. I don't know how I am going to handle him going under surgery for all that time and not knowing what's going on, knowing that noone will be there with him, not being able to support him. I just don't know what the best thing is to do.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Camillez,

My goodness that boyfriend of yours is stubborn! A few alarm bells are going off when looking at the discharge plan. Your boyfriend will be in hospital for a couple of days, remember this is a major op and great care is needed after surgery. After this sort of op you can barely stand up straight, you have to rest and heal. You won't be able to walk but a few strides let alone partially home. You risk internal bleeding and herniation, he should have a rethink.

You are caught no matter which way you turn. Your boyfriend would be upset if you failed to keep his secrets, on the flip side, his parents will be annoyed with you for not telling them.  I would pay attention to my gut feeling!

 

Djinnie

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I don't think that you are getting all the information correctly. It sounds as if your boyfriend is only telling you what he wants to. I ask because his plan is not going to work. First of all he will not be sedated for 18 hours. Secondly the discharge planners will send him to a nursing home unless there is a good support plan in place. They will ask questions looking for specific responses. Particularly contact person, and where will money come from?  Does he even have insurance or a job? I don't want to sound unsupportive but none of this sounds right. May I ask how old you are?

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I'm glad you said it, Fox, because I was thinking the same thing.

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

In what country is your boyfriend? They seem to have a different way to treat cancer than we do here in Canada or in the US. As Fox said, something seems wrong with this.

camillez
Posts: 14
Joined: Nov 2014

Hello all,

He is getting treated in Brazil and is 21 years old.

He doesn't have insurance but there are plans there where you can pay off the surgery bit by bit. He has already paid for most of the cost with all of his savings. But yes, the surgery is very expensive and after this he won't have any money left. 

Going for laser surgery. I don't know how long he will be sedated for but I know the procedure will last a total of 18 hours. He said they wil keep him there for a few days for recovery and that he will have a physical therapist helping and teaching him how to slowly move again. He said he told the doctors that after a day or two after they release him he plans on driving home himself (6 hours) they said he will have to stop every hour or so because they don't want him to stay in one position for long amounts of time unless it is lying down on a bed.

icemantoo's picture
icemantoo
Posts: 3282
Joined: Jan 2010

My ride home as a passanger 2 days after surgery was not fun. There is no way he should be driving 6 hours even at 1 hour intervals, 2 days after surgery. These are my thoughts.

 

Icemantoo

camillez
Posts: 14
Joined: Nov 2014

Thanks for your opinion icemantoo, I believe you are right. This is no time to be tough. I can't imagine the kind of pain one must be in after surgery. I am happy to hear you got home safely though :) I am planning on convincing him to change that plan of his. It's definitely  good to hear this from someone who has had to do the same already. Did you have laser or open surgery? I bet either way, its just as dangerous.

growler9
Posts: 48
Joined: Oct 2011

Since 1988, the Brazilian constitution has guaranteed that everyone have access to medical care in Brazil. This service can be obtained from the public national health system, from private providers subsidized by the federal government via the Social Security budget, or from the private sector via private insurance or employers.

Medical care is available to anyone who is legally in Brazil, which, of course, includes foreign residents.

Those who cannot afford to pay for health care in Brazil use the government’s free public national health system, mentioned above. They pay nothing for doctors’ fees, lab fees, hospitalization, surgery, or even prescription drugs. Brazil’s national health care system is roughly equal to the caliber and operational style of the Veterans Administration hospital system in the U.S. Municipal hospitals are widely available, and provide free treatment including emergency services to everyone.

For the highest quality of health care in Brazil, the private system is generally better than the public system, with shorter waits and better care. The more affluent Brazilians generally use this system, which covers about 20% of the Brazilian population. There are several hundred firms offering four principal types of medical plans: private health insurance, prepaid group practice, medical cooperatives, and company health plans.

The cost can vary, according to the provider, coverage, and region. We spoke with one expat (over 50 years old) whose plan came with a free complete physical, medicine, hospitalization with a private room, dentistry, and eye care. His cost was $124 per month (R268 reais); a premium that goes down if he makes no claims. The medical provider UniMed quotes $277 (R600) for full coverage for a family of three.

Public health care in Brazil is still available should you need to use it, even if you have private health insurance.

Alan

camillez
Posts: 14
Joined: Nov 2014

Thanks for the health care information Growler! That was great!

He doesnt pay for health insurance so usually goes through the public system. But for his cancer he has definitely decided to go through private sector. He had to pay for exams out of pocket and also his surgery obviously. but he won't have anything left after this so he will have to figure something else out, hopefully by then he will have said something to his parents.

 

myoung790
Posts: 75
Joined: Sep 2014

18 hours of surgery to remove a tumor and some nodes?  Camille, I agree with everyone else.  Something is not right here.  I have no idea what laser is, but I will assume it is laproscopic?

I'm having a real hard believing that this type of surgery could possible be 18 hours.  

 

donna_lee's picture
donna_lee
Posts: 966
Joined: Feb 2009

It depends upon when they start the clock.  Does the time include prep time, and recovery room, in which case it could run to 18 hours.

I had stage 4, with mets to liver and they weren't sure where else.  I was actually on the OR table for 11 1/2 hour for non-laser surgery, which included removal of the r. kidney, exploration and removal of the nodes behind that kidney (2 or 11 were positive for cancer), removal of left lobe of liver with one tumor, several wedge resections of the right half of the liver with immediate pathology each time to Dx the cyst or tumor, and removal of the gall bladder which had a congenital defect in the bile duct.

I'm sure the surgeons will take their time exploring the intestines for any evidence of mets, even if they use a laser to excise them. Remember, laser surgery doesn't always mean laparascopic.

He may not be discharged as soon as he would like as he'll have a Foley catheter, IV's, an abdominal drain tube, and leg compression sleeves.  He'll have to be able to eat, drink, go to the bathroom on his own, and walk with only mild assistance.  Depending upon the road, a 6 hour ride is doable, as long as there are periodic stops to move around and elevate his legs.

Why he doesn't want family there is for him to know...but it might be nice to share with you, too. Do what you can from where you are and trust that if he really needs help, he'll ask someone.

Donna

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