just learning about CC
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- This topic has 24 replies, 17 voices, and was last updated 12 years, 6 months ago by attygail.
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January 31, 2012 at 1:34 am #57058wallsm1Spectator
Jessica,
I’m sorry to hear about your situation, but you have come to the right place for support. I agree with others that you should try to get a second opinion. Try to see if surgery is an option. If it’s not, it seems pretty standard that patients get put on some type of chemo. Given his age, he may handle treatment well. You never know until you try.
I’m sorry you had such a horrible experience.
This is a difficult diagnosis to deal with and I can understand why your husband is feeling the way he is. Just try to be supportive. I think if you see another Dr and they come up with a treatment plan, your husband may feel a little better. Always remember, there is hope.
I am 32 and I wish I could say I am the youngest member here, but I’m not, we do have others your husband’s age and younger. My oncologist said this disease is rising in young people and they don’t know why.
I wish you the best of luck. Please keep us posted.Betsy, that is a great story!
Susie
January 31, 2012 at 1:28 am #57057EliSpectatorHi Jessica,
I will repeat what Marion and PCL1029 already told you. You need to establish whether a surgery is an option for your husband. That should be your goal #1 right now.
Re: seeing another doctor
I’m in Ottawa. My wife is being treated at The Ottawa Hospital, one of the largest hospitals in the country. I’m certain they see a higher volume of CC patients than hospital in Halifax. I know for a fact that some PEI patients come here for a consultation. If you decide to get a second opinion, Ottawa might be a good place to go.
I’m not sure how exactly to arrange the referral, but I guess you can approach it two ways.
1. Ask your PEI doctors about referral to Liver and Pancreas Unit at The Ottawa Hospital.
2. Call Liver and Pancreas Unit yourself and ask them about inter-provincial referrals. They might be able to give you some pointers. Here’s their phone number: (613) 761-5015
Any questions – feel free to email me through this web site (see button to the left).
Best wishes,
EliEDIT: Jessica, I missed your post where you mentioned second opinion in Toronto. It’s great that you are trying to arrange that. Is it Princess Margaret Hospital by any chance? I heard they are excellent.
January 31, 2012 at 1:24 am #57056lainySpectatorJessica, you are doing all the right things and I am so happy to detect a humor in all the scary stuff. It really will help you get through. A very good book is the Anti Cancer Book. Also on our Home page where you will find a list of categories there is a great one on nutrition. By the way I LOVE asparagus. I used to just give Teddy Carnation Instant Breakfast. He favored the vanilla and I would blend in a banana. On days he didn’t want to eat so much he could have it 3 times a day if he wanted instead of a meal and it has all the nutrients he needed. I have my fingers crossed for you to hear very quickly from one of the Docs.
January 31, 2012 at 1:13 am #57055jessicaMemberThank you everyone, I really hope that this doctor was having a bad day and/or didn’t realize how much the way he spoke to us bothered us. We are waiting (not so)patiently for news of a second oppinion from Toronto. We know that the PET scan is the best thing to do and will still have that done in Halifax and send that information on to Toronto as well. I think at this point we are going to go with the first doctor that gets back to us as I don’t think time is on our side here. I am so glad that I found this site, a friend actually found it for me, we have a great support system here, but it is so nice to talk to people that have been through what we are about to go through. I am definitely ready for a fight and I hope my husband is as well…. I have put him on a healthier diet but is there any information on some foods feeding cancer more than others? Is there something that I should steer clear of or add more? I have heard that asparagus is supposed to be a “miracle veggie” for cancer, and it is one of those things that is always around and can’t hurt right… the poor guy is going to be sooooo tired of asparagus that he will crave hospital food Thanks again for listening, it really helps knowing that we are not alone!
January 30, 2012 at 11:40 pm #57054lainySpectatorBetsy, that was too funny. I mean probably not at the time but you cracked me up!
January 30, 2012 at 10:40 pm #57053betsySpectatorHi Jessica,
Right after my liver resection, I had a doctor ask me if I knew how deadly cc was and that his aunt died of it. The next time he came to see me, I didn’t recognize him (blame the morphin!) and I told him about this awful doctor who upset me so much and he said, “That was me!” He felt awful and apologized and he turned out to be and still is one of my favorite doctors. I’m not saying that’s the case for the doctor you saw but it’s food for thought. However, I think it’s very wise to get a second opinion.Betsy
January 30, 2012 at 10:16 pm #57052pcl1029MemberHi, Jessica,
I am a father of four children;
I am also a patient of this horrible disease for almost three years;
I also happened to have a big tumor like your husband on the left side of my liver.
I also got very depressed like your husband at the beginning of the diagnosis .What I am trying to say is this, please let your husband know he is not alone;please tell your husband it is ok to get depressed for a while. Sooner or later things will turn around and tomorrow will be another day of hope .
Apart from the bad experience that you have had with that doctor; He did the right thing to order a PET scan to look for metastasis (or spreading) of the cancer to other parts of the body. If there is no spread;surgery may be the option for a possible cure;and I think that is why he ordered the PET even he had told you not so.The doctor does have a heart after all because of you;may be he had a very bad day before seeing your husband. Is he a surgeon? or GI specialist? or a GP?
Chemo or radiation therapy are other options.
Meanwhile, ask your husband to eat well so he can fight better later.
Keep in touch,and tell your husband he is not alone;and above all he has a good wife ,like you, to take care of him.
God bless.January 30, 2012 at 8:40 pm #57051marionsModeratorJessica…I am glad that you have found us. Your world has turned upside down, but for all we know it may just find its balance again.
Jessica when confronted with this diagnoses you would want to make sure to be evaluated by an expert someone, who treats more than 20 patients per year (at minimum.) Although, there are a few exceptions generally these physicians are found in major cancer centers. Things are a bit different in Canada therefore I rely on our Canadian members to step forward and help you out.
With absolute certainty you want to know that a surgery (resection) is not an option for your husband.
So, take a deep breath, put on your boxing gloves and be ready for the fight.
Hugs and love,
MarionJanuary 30, 2012 at 7:58 pm #57050lainySpectatorJessica, welcome to the most courageous and loving family anywhere.
I am so very sorry about the Doctor you went to and have never heard of any Doctor speaking so horribly to a CC patient. I hope you can find someone else to take over your husbands care. This man is totally unacceptable. First of all he doesn’t even know what he is talking about! Surgery gives the best fighting chance. Next, we don’t have an expiration date on the bottom of our feet. My goodness, we are getting more and more success stories on our site every day. As for your husbands spark….how can he have a spark after what he heard? I promise you that once you get to a real doctor who has dealt with CC and a game plan is put in to place that spark will return. In the meantime read and learn all you can as knowledge is the most powerful tool when fighting this CC. We have a search engine at the top of the page where you can ask questions. I am hoping someone may know of a Doctor in Halifax for you to see. In the meantime become the best advocate you can, be strong and ask away to us as well, we will try to help. You are not alone.January 30, 2012 at 7:15 pm #6283jessicaMemberI guess I will just jump into it, in November my husband was a healthy dairy farmer always on the go but had a bit of a stomach ache… He went to see the doctor a month later because his stomach ache was now there every day. He happened to ask for a blood test, just after Christmas blood tests came back with high enzyme levels. January 10th he had a CT scan that showed two tumors on his liver. Jan 17th he had a biopsy done, and January 23rd we found out it was cancerous. We were sent off to Halifax (the largest city close to us, about 4 hours away) and talked to the worst doctor I have ever met! He came in the room and told us that if my husband was an older man he wouldn’t even meet with us, but because my husband is so young (my husband is 27) he would “give it a shot”. He told us that he would not cure my husband with surgery but give him better odds with chemo, which would still only give us about 5%….. but without surgery he would die. After I asked a couple questions between tears (and some hyperventilation) he left with a promise to call within a week. We are now waiting for a call for a PET scan, which may take a couple weeks. I am so heart broken and sick at how some doctors can talk to someone that is going through this, the only time the man looked remotely sad is when he asked if we had children (we have a 2 and 3 1/2 yr old) and he just looked at us like, pitty they will lose a father. How do you handle this? How do people have the strength to fight when all of your hope is snatched away from you so easily? I do feel like fighting, because I am a spiteful person and want to rub it in this doctor’s face that we are stronger then that, but I have gone elsewhere to try and get another doctor….. but is there any trick to get through these feelings of helplessness? My poor husband seems to be on auto pilot, he has no drive to go to the barn, we have had to hire someone to work for him because he just doesn’t want to. He doesn’t want to leave the house and doesn’t want to know how long he has, which I understand. But how do I get him to want to fight? He will do what ever he is told, he wants to live, to be with myself and our kids, but that spark is gone in his eyes…… how do I get it back?????
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