• Decision Point (Numerous questions in my head!)

    Asked by i_am_scared on Thursday, November 1, 2012

    Decision Point (Numerous questions in my head!)

    As of today - should I break the news to my dad (patient) and my mother just now?
    Dad - He's just out of surgery and recovering. May not want to hear this news.
    Mum - A very emotional person. May not be able to digest this news.

    2. Should I break the news - Who should do it? Me? A close relative like my uncle? or the Doctors themselves?

    3. Should we go ahead with Chemo + radiation as per doctor's suggestion? - Heard that it sorta sucks out all the life/light out of the person. Might stay alive, but like a vegetable. (I could be wrong on this. Rather I hope.)

    4. Any alternative therapies?

    Just so you know - I am his 24 year old son. Just started my career. Feel really scared. But trying to put up a really brave act - atleast in front of my mum and dad. Telling them that its gonna be alright. I have an elder sister who lives/works overseas. She did visit my dad post surgery for 5 days and she's equally scared/worried and feeling helpless since she lives away!

    39 Answers from the Community

    39 answers
    • nancyjac's Avatar
      nancyjac

      Break what news? Is the news about you or about your dad? If it is about you, that's your call. If it is about your dad, that's not your call. While I certainly appreciate your concern, we parents are actually pretty strong and have a lot more experience than our children (even the adult ones) with dealing with adversity.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      sorry.. whether to tell my dad (patient) & my mum about what my dad is suffering from. Gliobastoma Grade IV and its effects. Should I tell him and my mum that he might be alive for about another 15 months!

      The doctors told me this just yesterday.

      over 4 years ago
    • so4getful's Avatar
      so4getful

      My sister was diagnosed with Glioblastoma Multiforme Stage IV almost 10 years ago. They told her 18 months as well...

      And yes, you need to tell both of them. They need to know, since they have a lot of decisions that they will need to make...

      If you don't tell them and the disease progresses, they will find out sooner or later.

      As to who should tell them, I'm surprised the doctor hasn't already. Usually the doctor who ordered the surgery would relate the news, offer advice, suggestions, support options, etc. If the doctors there don't do that, I'd suggest that you do a little research (internet, talk to doctors) so you have the advice, suggestions and support options to give them when you break the news.

      over 4 years ago
    • abrub's Avatar
      abrub

      Your dad needs to know what is going on. However, leave out "suspected expiration dates". Everyone is different, and responds differently to treatment. I was "given" 3 years over 5 years ago, and am now completely healthy, anticipating a "normal" (whatever that is) life expectancy.

      Actually, the dr should tell him, but it would be good if you can be there for support for him and your mother. Yes, she'll get emotional. This is hard news for anyone to digest. But we learn to live with it.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      well... the doctors are quite good.. I just got to know this yesterday. Not sure whether I just tell my dad right now or wait for a week or so and give him and my mum info in small doses.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      dad is still in the hospital recovering from the surgery he just had

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      I just noticed from your profile that you are in Mumbai. I don't know the laws there, but here in the US, unless you have a medical power of attorney (meaning that your dad is incapable of making his own medical decisions) this is not up to you. Even if that is not the law in your country, it is simply ethically and morally wrong for you and your sister to take control of your parents' lives by making decisions that are just not your's to make. Talk to them, listen to them, and then support whatever decisions your dad makes.

      And just BTW, as a 65 year old mother of 4 adult children, 3 grandchildren, and 3 greatgrandchildren, chemo most certainly didn't suck the life or light out of me and I am most definitely not a vegetable. I won't say that chemo as easy, but it's not as hard as having and raising babies.

      over 4 years ago
    • abrub's Avatar
      abrub

      Your dad's dr is the one responsible for telling him the news. He needs to determine how much he can absorb based on his post-op status. Please ask the dr not to give definite timelines. While your father's prognosis is serious, he could be one of the ones who responds well to treatment. On the other hand, he needs to know enough so that he can essentially get his house in order, come what may.

      My daughter is your age, and has been a wonderful support for me through my cancer journey. But we parents, in our 60s, are still very capable of making decisions for ourselves. While 62 is a lifetime away for you, we've made it this far, and generally feel young and alive. However, we also have the life experiences that help us deal with the bad as well as the good.

      You also need to find yourself a family/caregivers support group. If there is a Gilda's Club or Hope Club near you, look into it for the family/caregivers groups. You'll have a place to share your concerns and fears. Cancer is a family disease. Your dad has the physical aspects, but you all share the emotional aspects. You need to take care of yourself as well.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      Hi Nancyjac,

      I guess you misunderstood me a wee bit. I got the news from the doctors that my dad has glioblastoma just yesterday. He will need to know.. yes! how do i tell him what has happened to him right now? without freaking him out! Dad is still recovering from the surgery. I dont see a need to start talking legal terms right now.

      I am looking at the best interest of my family!

      just need some help in terms of how to tell him and my mum.

      i just cant tell him that he is in a really critical condition and might kick the bucket in the near future and expect him to be all cool about it!!!

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      abrub,

      Thank you for your response... quite comforting actually....

      why are we stuck with how to just break the news bit of my questionnaire?

      i'd like to know if chemo + radio is good to start with?

      or any other alternative medicine suggestions?

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      I-am-scared,

      Maybe it is a cultural or language difference I am not understanding. Are you saying you dad had surgery without having a clue what for? Let's forget legalities. Think of it this way: As an adult, how would you feel about your parents withholding information from you about your life or enforcing their decisions on how you live your life?

      All I am saying is that unless your dad has been diagnosed as mentally incompetent, IMO, you have no right to make any of these decisions. Again, it may be a cultural difference, but I still find it extraordinary that your dad has not already been told all of this and more by his doctor. Your dad deserves that respect from you and from his doctor.

      over 4 years ago
    • abrub's Avatar
      abrub

      I see you are in Mumbai, and don't know the protocols there. In the US, it is the dr's responsibility to tell the adult patient, assuming the patient is competent. In India, is it the family's responsibility to make those decisions and to inform the patient?

      You should probably speak with your elder sister, and discuss how the family wants to handle this. Again, we are dealing with significantly different cultural norms, so what goes here in the States might not be appropriate in India. My daughter, mentioned in an earlier post, has spent several years in India, tho in the northern parts. I'll ask her what she would understand as she is more aware of both cultural perspectives. I'll check up on your postings, and I'll let you know when I hear back from her. I know she's unavailable for a few hours now, and that I'll be going to sleep early tonight (in about 4 hours), as I have surgery very early tomorrow. But I will get back to you.

      Try to catch your breath. This is all very hard, and I know how your head is spinning with the news and how to handle it. You will get through this, despite the pain it causes.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      nancyjac,

      Below are my responses to your lines:

      Maybe it is a cultural or language difference I am not understanding. Are you saying you dad had surgery without having a clue what for?

      = My dad knows about the brain tumor. The surgery was done only on his consent! He is fully aware of the tumour being cancerous.

      Let's forget legalities. Think of it this way: As an adult, how would you feel about your parents withholding information from you about your life or enforcing their decisions on how you live your life?

      = I am not gonna withhold info about my dad's condition neither i am gonna 'enforce' decisions!

      All I am saying is that unless your dad has been diagnosed as mentally incompetent, IMO, you have no right to make any of these decisions.

      = my dad has not been diagnosed as mentally incompetent.

      Again, it may be a cultural difference, but I still find it extraordinary that your dad has not already been told all of this and more by his doctor.
      = the doctors have been keeping all of us (INCLUDING MY DAD) informed at all times about the diagnosis, plan of action and basically all steps involved in the disease management.

      Your dad deserves that respect from you and from his doctor.
      = There is absolutely NO denial to this! my dad deserves all the respect i could possibly give!!

      nancy - please dont take this the wrong way... but it looks like you understand my lines differently.
      i am quite scared about the fact that this thing what my dad has is quite scary. (read up on wikipedia about Glioblastoma if u have some time to spare...) I just dont know how he will absorb this news and live with it?
      I hope he can take it in with courage....

      I want him to be happy for how many years ever he'd live... we all love him... having a dad like him is probably the best thing that ever happened to me!!!

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      hi abrub,

      below is my response to your lines -

      I see you are in Mumbai, and don't know the protocols there. In the US, it is the dr's responsibility to tell the adult patient, assuming the patient is competent. In India, is it the family's responsibility to make those decisions and to inform the patient?

      = Well im actually in Bangalore, India. It definately is the doctor's responsibility to inform the patient and the family about the medical condition and the suggested therapy.

      Of course.., in sensitive issues like this. I want to my mum to know (which she will get to it in a matter of days) everything about the situation. However I know for a fact that she's an emotional person who's breakdown that very moment and take it too hard on her.

      You should probably speak with your elder sister, and discuss how the family wants to handle this. Again, we are dealing with significantly different cultural norms,

      = About the cultural norms - not that much of a difference to the west.... my family is widely traveled and is highly educated. its just that i dont want my mum to get worried sick.
      as for my dad... i want him to be in high spirits and in a very optimistic mode...

      so what goes here in the States might not be appropriate in India. My daughter, mentioned in an earlier post, has spent several years in India, tho in the northern parts. I'll ask her what she would understand as she is more aware of both cultural perspectives. I'll check up on your postings, and I'll let you know when I hear back from her. I know she's unavailable for a few hours now, and that I'll be going to sleep early tonight (in about 4 hours), as I have surgery very early tomorrow. But I will get back to you.

      = Thanks for your help.. really appreciate it... I look forward to hearing from you about your daughter's viewpoints. And yeah.. all the best for your surgery! :) I wish you a speedy recovery from the bottom of my heart!!!!!

      Try to catch your breath. This is all very hard, and I know how your head is spinning with the news and how to handle it. You will get through this, despite the pain it causes.

      Thanks a ton!!

      over 4 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      I'll take these one at a time. If I understand your first question, you want to know if you should provide your Dad with the "prognosis" or if you should let an Uncle (assuming this is your Dad's brother) or the Doctor tell him. I would say let the Doctor do it. He has experience delivering this type of news to people and I would suspect that your Dad will have questions following this discussion that you can't answer.

      As far as going with chemo - I think you're asking a question on behalf of your Father here. If they suggest chemo + radiation then yes, you should do it. I went through 12 weeks of chemo and yes...It can make you sick but it in no ways turns you to a vegetable.

      As far as alternative therapies, this I can help you on but you might try contacting the American Cancer Society but being that you're in Mumbai I'm not sure of what help they could be but your never know. They may be able to suggest something that you could mention to your Fathers Dr.

      Good Luck To You!!

      over 4 years ago
    • GGP's Avatar
      GGP

      We were faced with a similar situation. Mom was diagnosed with an inoperable lung tumor, and treatment wasn't going to help. We told her the facts, what the doctors said about the seriousness of it and treatment MAY, or MAY NOT help. Do you want to go through treatment or let it go and enjoy the rest of what we may have.
      She chose to not have treatment.

      Greg P
      Team WhatNext

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      hi Ticklingcancer,

      I'll take these one at a time. If I understand your first question, you want to know if you should provide your Dad with the "prognosis" or if you should let an Uncle (assuming this is your Dad's brother) or the Doctor tell him. I would say let the Doctor do it. He has experience delivering this type of news to people and I would suspect that your Dad will have questions following this discussion that you can't answer.

      Thanks for your reply... yeah... even i believe the 'prognosis' to be provided to my dad by the doctors themselves.. im sure they are trained on how to discuss such matters with the patient. And for sure... they are the right people who can answer the questions my dad would possibly have.

      Coming to the chemo bit - i just heard from a friend telling me that chemo has really drastic side effects and asked me to do some research on alternative therapies... my apologies for using a strong word such as 'vegetable'. the doctors have advised chemo+radiation. and are going to start it soon too..

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      We were faced with a similar situation. Mom was diagnosed with an inoperable lung tumor, and treatment wasn't going to help. We told her the facts, what the doctors said about the seriousness of it and treatment MAY, or MAY NOT help. Do you want to go through treatment or let it go and enjoy the rest of what we may have.
      She chose to not have treatment.

      hi greg!

      I guess its a strong decision your mum took by NOT going for the treatment.
      If i may ask you.. when was this diagnosed and how has she been keeping up?

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      PS - The user mechanics of this website in terms of responding is very poor.. I just joined this site a few hours ago...

      I had to copy and paste your response while i was typing my response just so that i can respond you said...

      its difficult to remember everything when you have a hundred things running in your head.

      the response field where i can type in is way up the screen... i wish they make it more like facebook.. which is in a conversation style.. much simpler

      @Greg - your signature says that you are a part of whatnext team...

      please take this suggestion of mine to your tech team who built this site.. they might do something about this.

      over 4 years ago
    • GGP's Avatar
      GGP

      I'M Scared- I will pass along your suggestion.

      Thanks for signing up and posting your question. Our site does operate a little differently than Facebook, but several of those things are on purpose. It takes a little getting used to, but you'll find your way around in no time.
      Let me know if you need help with anything.

      greg P
      Team WhatNext
      Community Mgr.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      OK, let me take a different approach then by reading BETWEEN the lines. I get that you are scared and feel helpless. I get that you are looking for some way to ease or control your fears by taking action and control of your father's situation. If that is the case, here is what I would suggest: Find some one to talk through you own feelings with.....a friend or relative or professional who is not intricately involved in this situation. Don't add to your fear by taking on what is not responsibility. Let your father and his doctors do that. One your father has decided what he intends to do, let him be the one to come to you when he feels you are ready to hear his decisions. Listen and be supportive.

      over 4 years ago
    • Harry's Avatar
      Harry

      It sure does look like this thread involved a lot of misunderstanding. That's probably inevitable given some of the differences and the simple fact that you are scared. That is totally normal at this stage. You really don't know what to do. You want what is best for your parents and don't know what that is.

      To a large extent, this isn't your decision. As others indicated, your parents will make their own choices. The best thing you can do is support them in their choices. As for telling them in the first place, that really isn't your decision or your responsibility, but understand that they will figure it out eventually and that will be worse than knowing now.

      Is the short "survival time" what the doctor said based on his evaluation of your father or is it something you read on the Internet? Those survival times on the Internet are averages of large groups, are out of date, and don't necessarily apply to your father.

      The effects of chemo and radiation vary a lot. Modern drugs are much better than those used only a few years ago. Side effects can be bad, but are usually controllable and most go away after treatment. The question of whether to go ahead with treatment is an important decision your father will have to make. My mother (age 88) did not want chemo for her pancreatic cancer despite the poor survival time. You father is a lot younger and can expect many years of healthy living if he can get past this.

      This brings up a delicate point. I don't know the quality of care your father will receive in Mumbai or Bangalore. I suspect that the best cancer treatment centers in Mumbai are world-class but I don't know that. I don't know about Bangalore. I admit to a lot of ignorance on this subject. I know that our perceptions of India are out of date, especially in a city like Mumbai. I would be looking for the most advanced treatment center and doctors I could find--whether in India or not.

      Your fears for your father and mother are normal. But, this will work out and you will find that your fears will lessen as you have a chance to absorb all this. You have just been told some very shocking news and you need a chance to deal with it.

      over 4 years ago
    • the_older_one's Avatar
      the_older_one

      Dear All,

      Thank you for all the responses in this forum. My brother(I_am_scared) & I are very grateful for suggestions.

      I agree that we should most importantly let my parents know so that we can handle this issue together as one. We would probably let the doctors tell my parents and proceed with chemo+radiation. Since the news is rather shocking and difficult, I am confident in due course of time and with God's grace, we will pull through this uphill journey.

      That said do share with us, various difficulties/side effects/mood swings etc you have gone through during radiation & chemo so that we get an idea of how to handle such things.

      If you have some tips on healthy food choices, exercises etc please share them with us too.

      Most grateful to you all...

      Thank you

      over 4 years ago
    • carm's Avatar
      carm

      I think you should ask yourself who you would want to hear it from if it were you. AA 's are nothing to full around with so whether by you or the medical team, he will know soon enough. You have to move fast with these type of tumors. They invade the supporting cells of the brain. If you have any questions, I am an oncology nurse and happy to explain. Best of luck to your father and your family. Carm.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      Honesty is always the best policy...no matere how hard it is.Be honest with your dad.He will be alright with ir coming from you and will love you for it and let God do the rest.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      My mistake>matter instead of matere.:)

      over 4 years ago
    • princess123's Avatar
      princess123

      If his doctor still hasn't told him then you need to. Tell him everything you know and what the doctor has told you about treatment. Everyone reacts different to chemo. If he starts chemo and has a very hard time with it then he can always quit. I have had some bad reactions at times but nothing vegatable like. I haven't had the vomiting like you hear about. Cancer treatments have changed a lot in the past few years. Getting emotional is just part of it. For all of you. Good luck. Just be there to support your mom and dad through the next year or however long he is on treatment .

      over 4 years ago
    • Lindy's Avatar
      Lindy

      Oh, you have a tough situation. The patient and spouse are the ones to seek that information, make those decisions. Your best position is to be with them to gather the information and help them understand. My husband died 15 years ago of high grade astrocytoma, at that time there was little of value in chemo, the oncologist told him he would gain 3% time at the cost of zero quality of life. He opted for whole head radiation only. There may be some improvement today, much depends on where it is, how contained...etc. Get all information, know what is available should he qualify for targeted surgery/radiation. Give them time to get their bearings, catastrophic news for a couple. Lindy

      over 4 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      Everyone reacts differently to chemo so it's hard to say what your father may experience but for me, nausea was pretty bad. Body aches. Some poeple don't experience hardly any side effects.

      over 4 years ago
    • i_am_scared's Avatar
      i_am_scared

      Thanks a lot! all of you!! I spent another day in the hospital and just got back home. Discussed the cancer and the treatment to be followed (chemo+radiation) with both my father (patient) and my mother.

      My father will see the Oncologist and he will be advised the next course of action, the purpose of it and the side effects and everything in between!

      Please suggest me if there are any alternative therapies worth considering if any.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie (Best Answer!)

      Dear I AM SCARED;

      Of course you are. What news are you trying to break to mom and dad? Have the doctor (with you present) tell them the outcome of the surgery. Have his oncologist give him his options. Then let your father and mother talk together and decide. When I was 62, I was diagnosed with Stage IV Ovarian Cancer. I simply told the oncologist that I wanted to live.. that I was a tough old lady and would fight hard.l Trust me...I only had chemo - but for two full years. AND I'D DO IT AGAIN!

      Surgery removed my cancer, then I had two years of chemo to kill and wandering cells. Now I'm 69, active, feeling wonderful, have taken several vacations to places I'd always wanted to see with my husband and children (married children and grandchildren). This is I'm sorry to say, not your decision to make. He must decide... The doctors will tell them.. don't jump in with "You can't live like that... warnings" Yes we can fight. I've been cancer free for the last almost seven years.

      Yes encourage him to get the chemo and radiation... 61 is not as old as 24 thinks it is. Okay just read your later responses to the questions I too had. The doctors should tell him what he has..; You're there for moral support and encouragement... I was told a few hours after my surgery in Jan of 2006 that I had six months to live. Quit burying him... enjoy him, let him make decisions with your mother... and then Ask God to take everyones hand... ask Him to lead your Dad where He(God) wants him to be. It worked for me. Cancer free for almost 7 years.

      over 4 years ago
    • Rosa's Avatar
      Rosa

      It is very natural that you and your family are scared with the news. They are not easy ones.
      I definitely think that it is the doctor's duty to tell your father. He can explain all the details and answer all the questions. What you read on the internet is scarier than reality. Believe me.

      If the doctor recommends chemo and radio, go for it. They know better, they have all the knowledge and experience.

      It is not easy, he will feel very ill, but he will go through. Plus the doctors make adjustments, pre-medication, and free time to give him time to recover. Every person reacts different to each treatment, so you will have to wait till he starts. Just be there to support him and your mother.

      There are many people in this site that have recovered from different Stage IV CA's, were given very little time to live, but are very well and happy to be alive. They all give us hope that we can go on.

      Just two days after my diagnosis, somebody told me that usually the family takes this harder than the patient. It is true. I had to comfort my children during the whole process.

      People in this site are very good offering help and comfort. Write any time you feel scared.

      Be strong, be brave, be hopeful
      Blessings

      over 4 years ago
    • dealite2007's Avatar
      dealite2007

      Go easy on him...nancyjac. This isn't someone looking to steal someone's independence or claim him incompetent...He's just looking for some insight into the best way to break the news to his dad. I, personally, would talk to the doctor and have him tell him while I was there...because I wouldn't be able to answer all the medical questions the dad will have.

      over 4 years ago
    • nancibee's Avatar
      nancibee

      I am not going to address the concern about who should tell the patient and what but I do want to chime in on the chemo. Just completed 6 rounds of carbo/taxol. I also had 3 rounds of internal high dose radiation. Throughout my treatment, I led a normal life which included strenuous hiking. I experienced hair loss and a slight weight gain. That is all. Chemo is not necessarily a debilitating experience. I am not now nor have I ever been a vegetable. And any side effects from chemo are temporary. Death is not.

      over 4 years ago
    • geekling's Avatar
      geekling

      This is a matter for your family alone. The final decision rests with your father. He needs counsel from his physicians. Chemotherapy is always other than fun.

      There are always alternative therapies. Again, the decision rests with your Father. Your home country is the foundation of Ayurvedic medicine and there are, no doubt, good practitioners within your arms' reach. The concept of meditation, as is seen in the West, is also from India. Yoga is definitely a healing practice. All alternative therapies use plant based materials.

      I turned to a raw food lifestyle to heal. I do know people who have beaten back cancer by embracing food as medicine. Research artemisinin and graviola and nigella sativa and other plant based alternative treatments. Chaga mushroom extract is another. Most folks, myself included, turn to conventional medicine because it is so enticing. For me it was a promise of the (then new) chemotherapy drug being a 95% curative. I did not understand the radiation portion of the treatment and, after 8 weeks, was rather crispy. I had to endure 8 more weeks of radiation as, by that time, there was no turning back.

      10 years later, I am writing to you. If given the choice to do it all again, The truth is that I would not choose the conventional therapies because of the devastation that was done to my body by the radiation and because of the lack of concern by the physicians as to that destruction.

      But I am here and I am alive and I am glad of it.

      Keep the faith.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      First, an astrocytoma is totally different from a glioblastoma. I am a physical therapist, and I treat these differently. Your parents will need to be told before you begin treatment. They will be able tell something is wrong, and you can best determine how and when to tell them.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      I misunderstood the question. I thought you were the patient, but my answer is basically the same. You cannot keep this from your dad. He will know something is wrong. By not telling him, all you will do is shut down communication. If you do tell, you will find that in the next few years you will have some of the most memorable conversations with your dad.

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      "Please suggest me if there are any alternative therapies worth considering if any."

      If you are asking if there are alternative to chemo and radiation that have the same purpose and intended result, the answer is no. If your dad decides not to have chemo and/radiation and just have palliative treatment, there are many that his doctor can discuss with him.

      over 4 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      To I am scared:
      I'm shocked that your father's doctors told you before telling him. If your dad knew he had surgery for a brain tumor, he is likely prepared to get news about cancer. I'm older than your parents, and I would be furious if I was the patient in this situation. They will handle it because they have to. They are old enough to know that sickness is part of life.

      over 3 years ago

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