CSN Login
Members Online: 9

You are here

is knowlage power?

hansie
Posts: 37
Joined: Jul 2008

my wife was diagnossed with small cell lung cancer in nov of 07.After a rough winter of chemo and radiation treatments we had a 2 month quiet,but now it has moved to her neck,and they are now calling it advanced cancer,giving her 2-4 mo left with me and our boys.She dosent know,and neither do my boys(ages 10 and 12).So now i have two questions for you all...first off she looks good and seems to be staying relitavly active...could it realy take her out that fast?And how do you all feel about telling her?Shes had problems with depression before the cancer...very worried about effects of telling her...

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I think you are asking the wrong question, frankly. To begin with, I find it deplorable if, in fact, your wife's doctors advised you of her condition and did not advise her. I have never heard of such a thing and would be surprised if it does not violate HER patient rights, rights to privacy, etc. So I would suspect that unless some odd condition exists that you have not made us aware of, she DOES know, and, frankly, YOU should not, unless SHE chose for YOU to.

To get to your questions, small cell cancer is notoriously aggressive and it is not surprising to me that it has spread. It is conceivable that the timetable posited is in line, otherwise, I am confident doctors would not have thrown the number out there. However, there are a number of people on this very site who have been defying the 'predictions' for years. As someone once pointed out to me: we are not milk cartons; we do not have expiration dates stamped on our foreheads.

Re the second of the questions, you can probably surmise from above that I believe your wife already knows. If not, for whatever reason, I would consider it unethical NOT to let her know. Just as I consider it unethical that YOU do know and that SHE does not, if such is the case.

She needs to know. It is her life and she is entitled to know what she is dealing with and then how to enjoy her days remaining or even to consider alternative treatments and/or opinions.

Depression IS exacerbated by cancer, and a 'death sentence' if you will, can certainly contribute to it. On the other hand, you might be surprised to discover that being told this news opens her up to self-discovery and an urgency about enjoying life instead.

My take, for what it's worth.

Take care.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

PS In June of 07 I was advised I had 10 months to live, or so. The diagnosis proved to be incorrect (thus the lobectomy this year) but I did have an epiphany of sorts, once I got over the original shock of the news.

Had I NOT been told, for some reason I still cannot fathom, I would have been angry with a WHOLE bunch of people when I did find out, not the LEAST which would have been wife.

Hope this helps.

Take care.

hansie
Posts: 37
Joined: Jul 2008

well thanks for your input thats what i needed,was to hear from another patient how they would want to be treated.I thought it was odd,myself...thats why im here.Dr swears they have no other sites detected,and the mass in her lung is inactive,and shes ben doing so well i cant believe the prognossis.He presented it to me like "we want the family to be able to get things in order and i will work on telling her"and its left me in this pickle that i dont want to be in.Im just so worried about her.

cabbott
Posts: 1048
Joined: Aug 2006

It is not too late for a second opinion at a center that specializes in lung cancer so that they can take a look at the test results and verify that everyone has done all they could. If they really don't think anything can be done, it is time for them to help you with whatever is coming. Get whatever support you need to get all paperwork settled so that there are no hassles or stress in that direction. Discuss hospice care and decide WITH your wife if she wants to be at home or in the hospital should she start going downhill fast. Even if you decide that it is too early for hospice, get the living will made out now on what your wife wants done medically if she is sick or dying. Make sure every medical person (the primary care folks, the local hospital, any hospice care workers, the neighbors if they come over, the rest home attendants, anyone period who comes in contact with her) make sure they know what to do and what not to do. Hospice around here prints out a booklet specifically on the events that happen near the end of life and how to make someone comfortable. As scary as it was for me to read, seeing as I have both lung cancer and breast cancer, it helped. I found out that I should be able to function and not be bed bound until very near the end. With proper medical care, I shouldn't be in pain. My mind should work even when my body is slowing down. I will probably be able to hear conversations around me right up to the end. IV fluids and nutrition may keep me from feeling better while a wet washcloth might really help a lot if I can't eat or drink on my own. Like I said, the details were rough to think about and yet it helped to think about it. It is possible to be with the ones you love right up to the moment you step over to the "other side". End stage of life care is called palitive care. Everything that can be done to ease pain and maximize quality of life is done when you decide to go that route. Things like radiation, pain meds, oxygen, and other treatments can be used to keep someone doing the best they can. Aggressive treatment when it is no longer working is halted. Only the patient can decide when to stop aggressive treatment and start palitive care. I am sorry you folks have to deal with this issue. Get help when you need it. No one should have to go through this alone.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

hansie, my 'indictment' was not of you, and I hope you did not misconstrue it as such. No, I am bothered by the inaction or misaction, as I judge it, by the medical professionals involve, and your responses to me and especially to cabbott only serve to reinforce my position.

You have been put in an untenable position that you should never have been burdened with.

I will add this regarding your wife's trust in this doctor: I think it is great that she has such a relationship; however, perhaps if you can get her to go Sloan Kettering 'merely' to ease your own mind or some such, you might convince to let others have a second look.

In any event, best wishes to her, to you, and to your entire family.

Take care,

Joe

hansie
Posts: 37
Joined: Jul 2008

again thank you we have had a living wills for both of us for a long time,and a lot of the other stuff i allready know about(my mom isnt well,either...shes ben with hospice for a few months now)so im kinda prepped for that.What im not ready for is the emotional issues my wife will have that my mom doesnt...my moms82,lived her life and in her mind shes ready to go see my dad.My wife on the other hand is 42,weve got 2 young kids 10&12,and i know she s not done.Today she was sent away from chemo for low white blood cell count,and im starting to hear it in her voice and see it in her body language that she may be aware.My problem is that i know from living with her for 20 yrs that she should not find out from me.I have calls into her dr but i know from experience he will take his time getting back to me.As far as other opinions,well,i live 20 miles from memorial sloan ketering and she wont go...she likes and trusts the guy shes with,and wont change.As much as i dissaprove of her current dr's handling of things,im not going to fight with her over it...shes where she wants to be

cabbott
Posts: 1048
Joined: Aug 2006

I agree that the doctor should be the one to break the news. Your job is just to hold her hand through it. It is a tough job and you are a treasure to be thinking about what is best for her. Still she needs to be told by the doctor what is happening. Some folks want to know all the gory details (that's me, I'm not sure why!) and others just want to know that the doctor will be taking care of them whatever happens. But somehow I hope that doctor finds the words to tell her soon. That way she can plan how she wants to live each day for all the days that she has left.((((HUGS))))

C. Abbott

hansie
Posts: 37
Joined: Jul 2008

3 calls in to dr still no reply...

Loudon143
Posts: 9
Joined: Aug 2008

Hello...

I am a 46yr old asian women with 3 grown up children. I was diagnosed with adenocarcinoma of the lung stage 1.
Just last July 28, I had lobectomy. They took out the lower lobe of my left lung. They also took some tissues fr my lymph nodes and took more tests. When I went to see my Thoracic surgeon, he told me that I was doing well and cancer free. This Monday, I am going to see the Oncologist to tell me if I need further treatment.

Are these normal?
Everytime I talk, I start to cough.
Can't get comfortable at night when I lay on my bed.
Very emotional. Self pity? Am I going to die of cancer? When?
Too many questions on my head :)

Nell

cabbott
Posts: 1048
Joined: Aug 2006

Dear Nell,

I am a two time cancer survivor. The first time around I was diagnosed with breast cancer, stage one. I remember being seriously worried that I wouldn't make it through the month. All I knew about cancer then was that people died of it and I had it. (Not exactly a comforting thought at the time to say the least!) That was almost 6 years ago! Two years ago in August I was diagnosed with lung cancer, adenoma with BAC tendencies, stage 1A. By then I knew more about cancer fortunately. Cancer caught early and treated aggressively is often curable, not that you could have told me that 6 years ago. Even later stage cancer is treatable. Many folks at this site have lived for years after being diagnosed with stage 4 cancer. They give me much hope. There are many things you can do to make even the short term problems that come up more manageable. I used a body pillow as well as a pillow for my head to make a comfortable "nest" so I wouldn't roll on my sore side at night. Some folks sleep in a Lazy Boy recliner so that they don't lay flat. I much preferred my bed with pillows as needed. A ceiling fan on low helped me breath a little easier. The nurse told me that an open window or a fan would help. It did. I like to be active and it took a lot of time and effort to get my energy level back. It takes weeks just to get all the drugs out of your system and months for your body to recover from all the insults of surgery. My mom took me to the mall soon after surgery to walk during the day. At first I could barely toddle around the place once. Gradually I worked up to walking a mile. Then, later in the fall when it was cooler, I could walk two to three miles outside. That really helped me sleep and feel more normal. Of course, take your time and don't do any exercises until the doctors say it is okay. Even then, don't do too much. The breathing exercises they had me do in the hospital helped strengthen my lungs so that I could cough better. The doctor said to do them frequently at home too. That decreased some of the coughing. I'm not good at keeping those kind of exercises up, though I still have the device they gave me. Now I go to the local Y and do exercise classes. Yoga today is much more fun! I carried a water bottle with me everywhere I went in case of coughing attacks when I taught class the first year. Coughing is less of a problem these days, but I have noticed that when I avoid coffee the cough comes back. Only regular coffee and vigorous exercise seem to be really effective in stopping the cough for me. I have an appointment with a pulmonologist next month to see if he has any tricks in his bag to get rid of the cough without raising my blood pressure like coffee does. Support from fellow survivors like the ones at this website helps me get through the worries that used to keep me up at night looking at the ceiling. The chatroom here is great for talking to others in "real time". I found a support group in town (the Wellness Community) that provided support with arms. The local hospital puts on inservices on various cancer topics from time to time that I like. The discussion boards at this website are a great place for me to find answers from folks that have been there. I hope you feel better soon! Good luck at the Oncologist's on Monday!

C. Abbott

Loudon143
Posts: 9
Joined: Aug 2008

Thank you so much for enlightening me!!! I had a hard life when I was raising my 3 kids on my own. Now that they are grown and have their own lives I thought this is my time to enjoy life and now CANCER? Wow, it is a life changing event for me. I am a strong woman but cancer? I don't know. This is new to me. I have faith although sometimes I question it :(

Thank you again,
Nell

Loudon143
Posts: 9
Joined: Aug 2008

The Oncologist told me that I don't need any further treatment but I have to be monitored every 3 or 6 mos.
I have to believe that this cancer won't come back. I have faith!!!
Thank you again to this discussion board. It helped me a lot both physically and emotionally.
Nell

cabbott
Posts: 1048
Joined: Aug 2006

Wow! That's great news! I did not have to have chemo myself. The surgeon saw me every three months for the first two years and now I'm down to an x-ray followed by a CAT scan six months apart and I didn't even have to go in after the x-ray came back okay. I have lots of better things to do than go to unnecessary doctor visits, but I make every single one that they say are important. At four or five years I will go to one test every year. Then who knows! I suppose I will want an xray every few years just to make sure things are okay. There are some things you can do between doctor visits and tests to help keep cancer at bay. None of them are fail safe of course, but the research does show some things help. One of the big things that seems to prevent relapse and prolong survival is simple exercise. Daily exercise makes some seriously good changes in our bodies. It also strengthens bones, especially if you add in some strength building exercises along with the cardio stuff. When bones are strong there are less places for cancer cells to land and set up camp quite so easily. Walking, weight lifting, sports that involve some bone bouncing activity like tennis,football, basketball, or soccer all help build bones. Swimming and skiing may be good for the heart and important to do daily too, but they do not build bones. They help your heart (also an important piece of equipment if you are planning to live long and live well!). I'm not talking about spending all day at the gym. Thirty minutes to an hour each day is all you need. More than an hour is not really more effective. (Marathon running is actually associated with coming down with minor illnesses like colds for a month after the big event and preventing colds is another way to stay healthy when you have had lung cancer.) Eating a colorful diet with lots of veggies and whole grains also helps. Anything that makes you more healthy is great even if the cancer comes back, because you will be in position to withstand more aggressive treatment if you are in better shape. Of course, if it is successful in preventing the cancer from coming back, so much the better! There is research showing that selenium found in root veggies and spices like tumeric seem to lower lung cancer risk. Broccoli and broccoli sprouts,as well as green tea have chemicals that kill cancer in the test tube, though they are obviously not as effective as chemo. If they were, no one would ever have to do chemo. Still, they might help prevent something, so it may be worth adding to your diet. I figure anything that makes me healthy and feels (or tastes) good too is okay with me. So you won't find me chugging green seaweed or taking a million dollars worth of supplements (not proven in the research to be helpful but you might be amazed what people swear by), but I'm always looking for comfortable ways to stay healthy and fight cancer. Good luck in your fight!

Loudon143
Posts: 9
Joined: Aug 2008

You are God sent for all of us people who are at a lost with having to deal with cancer!!! Not only physically but also emotionally.
I thank you so much for all your support.
My best regards,
Nell

nubis's picture
nubis
Posts: 98
Joined: Mar 2008

I'm sorry to hear about the cancer on your wife. My husband has small cell cancer too. What happened? How the doctors found the cancer spread to the neck? My husband wake up with a lymph node on his neck kink of big. Doctors did a biopsy and now that I'm reading your experience I'm scared. I don't want to loose him. He is my only support. We don't have the results of the biopsy,......... What can I do? Everything was working well and now this.....................

hansie
Posts: 37
Joined: Jul 2008

First of all thanks again calbot and soccerfreaks.I spent a lot of time trying to NOT be the one who told her.and i ended up being that guy anyway.I think she has a lot of denial issues...shes now telling people its not in her thyroid,but it is.Nubis,welcome..we're pretty much in the same boat right now.As far as the tumor in her neck it became physicaly apparent looking at her neck.The scary thing about small cell is how fast it grows...she was(is)seeing oncologist weekly,and this thing grew under his nose too,and got to be the size of your first 2 fingers held together.The other problem is it is realy symptomless untill its bad.On the lighter side it withers under radiation...id say after her 10th rad treatment it became noticably smaller,and is eaven smaller yet now.Its the ones we cant see on the inside that scare me...seems if they can radiate it they can get it but if they dont know where to radiate,well then nothing happens.today is last topotecen round for now(last of 8)shell get 2 weeks off ,a pet scan and is allready scedualed for 4 more rounds of topotecan after scan...ill keep you posted

Subscribe to Comments for "is knowlage power?"