Doctors told us to decide, Quality or Quanity
Told after radiation and 2nd chemo that she was a micacle paitent as she was responding to treatment, (doctors were actualy celebrating) 60 days after last chemo We were told the pet scan did not show any active cancer and the mass by her broncia had shrunk. So we were elated. Told to come back in 90 days for a CT scan and follow up appointment. We did complain about abdominal pain and numbness in hands and feet, she had swollen up by 60 lbs, has been loosing about 5 lbs per week down to 97 after pet scan. Went back to clinic as pain was getting worse. 45 days after pet scan. 94 lbs To us just out of the blue the Doctors said to make a choice as due to her weigt loss they felt sure the cancer had returned they refused to do any more tests until we made the choice, they sent in a counsler and made a followup appointment for the 1st of dec.
Is this normal treatment? She has been going to the southwest cancer clinic in Lubock Texas, I thought she was getting good care but now I don't know. Forgot one coment the doctor used to push desicion. its been 7 months since you started treatment so its time to make a choice. I will add more to this post later
Comments
-
God bless you
God bless you and your family as you make these most difficult decisions. I am a "survivor", to far, not a caregiver. I too am 51, and just survived, for now, a rather aggressive breast cancer. I lost my breasts, did months of chemo, survived 2 major surgeries, and am NED at this time. I am so sorrry you have to go through this. I am so sorry your wife has to deal with all this. It is a horrible place to be!! But...you have to have faith in something or someone greater than ourselves. I will keep you and your family in my prayers..Alison
ps I think, I would choose quality.0 -
I forgot to mention that
I forgot to mention that after we called in about the pain she had a bone scan done. We asked about it and they said it was negative.
We live 75 miles from the clinic and when we got home my wives legs gave out and she fell, (was using a rolling walker) over the last week she is going downhill fast, She has fallen several times. Has to have help to get out of bed, dress, go to bathroom etc. She now on morphine 2x a day. I can see her legs getting worse daily now. She has also decided that she is putting it in God’s hands, He is the only true healer and is going to tell them quality of life.
I guess my problem/concern is how do the doctors know that it time to make a decision. The chemo she had definitely caused the nerve damage and I was told it damaged the limning of her stomach, Shouldn’t they at least check her digestive track? To base their decision based on a 4 lb weight loss over 7 weeks just does not make sense to me. Do any of you feel the sudden changes are due to the doctors breaking her spirit? I know that they are physical. At this time if there is not a change then I support my wife’s choice and agree with her, the doctors have had their chance, I just want to make sure it is cancer and not a nerve/digestive problem from the chemo. Should I try to find another cancer treatment clinic?0 -
Dear Stretchstretch7425 said:I forgot to mention that
I forgot to mention that after we called in about the pain she had a bone scan done. We asked about it and they said it was negative.
We live 75 miles from the clinic and when we got home my wives legs gave out and she fell, (was using a rolling walker) over the last week she is going downhill fast, She has fallen several times. Has to have help to get out of bed, dress, go to bathroom etc. She now on morphine 2x a day. I can see her legs getting worse daily now. She has also decided that she is putting it in God’s hands, He is the only true healer and is going to tell them quality of life.
I guess my problem/concern is how do the doctors know that it time to make a decision. The chemo she had definitely caused the nerve damage and I was told it damaged the limning of her stomach, Shouldn’t they at least check her digestive track? To base their decision based on a 4 lb weight loss over 7 weeks just does not make sense to me. Do any of you feel the sudden changes are due to the doctors breaking her spirit? I know that they are physical. At this time if there is not a change then I support my wife’s choice and agree with her, the doctors have had their chance, I just want to make sure it is cancer and not a nerve/digestive problem from the chemo. Should I try to find another cancer treatment clinic?
I logged back on because I couldn't stop thinking about your post. I think you should reach out and ask for some help for yourself and dealing with all this. Perhaps a pastor or a professional couselor. If your lovely wife, is truly not going to get better, I imagine you don't want to waste any of this precious time second guessing yourself or the decisions that are being made. God bless you again...alison0 -
Stretch, the behavior andwebbwife50 said:Dear Stretch
I logged back on because I couldn't stop thinking about your post. I think you should reach out and ask for some help for yourself and dealing with all this. Perhaps a pastor or a professional couselor. If your lovely wife, is truly not going to get better, I imagine you don't want to waste any of this precious time second guessing yourself or the decisions that are being made. God bless you again...alison
Stretch, the behavior and responses from her DR recently sounds to me that they are cutting corners and bypassing testing and seem to want decision from patient rather then leading and laying out options. What you mentioned is not normal care but does happen. Have her dr or another DR find out if cancer has grown and met as educated guesses and assumptions is what weatherman do. I would get referral to another med oncologist and insist on testing and scans. If you meet resistence, speak to Medical Director and Admin of Medical center. im sorry you and spouse have to go thru this at such a difficult time0 -
that sounds oddHeartofSoul said:Stretch, the behavior and
Stretch, the behavior and responses from her DR recently sounds to me that they are cutting corners and bypassing testing and seem to want decision from patient rather then leading and laying out options. What you mentioned is not normal care but does happen. Have her dr or another DR find out if cancer has grown and met as educated guesses and assumptions is what weatherman do. I would get referral to another med oncologist and insist on testing and scans. If you meet resistence, speak to Medical Director and Admin of Medical center. im sorry you and spouse have to go thru this at such a difficult time
Stretch that whole situation sounds odd to me! I am a nurse and if that were my dad I would get him out of there. MD anderson is texas is one of the top cancer clinics in the country! Is that an option for you. To go from excellent to the "quality of life" talkk seems a bit strange. I would get somewhere else fast!0 -
Sorry to be suspicious ofHeartofSoul said:Stretch, the behavior and
Stretch, the behavior and responses from her DR recently sounds to me that they are cutting corners and bypassing testing and seem to want decision from patient rather then leading and laying out options. What you mentioned is not normal care but does happen. Have her dr or another DR find out if cancer has grown and met as educated guesses and assumptions is what weatherman do. I would get referral to another med oncologist and insist on testing and scans. If you meet resistence, speak to Medical Director and Admin of Medical center. im sorry you and spouse have to go thru this at such a difficult time
Sorry to be suspicious of the medical proffession in general and hospitals in particular, but have you asked where your limits are on your insurance? As someone who works in a for profit hospital, I know that less treatment and early discharge can be a direct result of insurance benefits being maxed out. It's unethical, but it happens.0 -
Suspicious of InsurancePennymac02 said:Sorry to be suspicious of
Sorry to be suspicious of the medical proffession in general and hospitals in particular, but have you asked where your limits are on your insurance? As someone who works in a for profit hospital, I know that less treatment and early discharge can be a direct result of insurance benefits being maxed out. It's unethical, but it happens.
In a sad way it is good to see that me thinking that it was either insurance or the fact that this clinic has a heavy patent load was way off base. It is a Univeristy medical center which is all froms of government, fed, state and county. I have Tri Care Prime which is a retired Military. It has been good insurance but of late it does seem that they are restricting services. Or I may just be getting peranoid from all the Health care reform talk. I have tryed to rationalize this into, Due to heavy patent load the docs are trying to cut cornors and are not paying attention to each record. Or maybee Ttere was something showing on the PET Scan and they just wanted to let us have 3 months not to worry about it get through the holidays. We are in a holding patern until wednesday the 1st. My wife has a few questions but all the side effects and uglyness of cancer have her worn out. When they gave us the choice it broke her spirit and that is now having an effect on her as well. I think she has had all the doctors she can stand0 -
she's making the natural choicestretch7425 said:Suspicious of Insurance
In a sad way it is good to see that me thinking that it was either insurance or the fact that this clinic has a heavy patent load was way off base. It is a Univeristy medical center which is all froms of government, fed, state and county. I have Tri Care Prime which is a retired Military. It has been good insurance but of late it does seem that they are restricting services. Or I may just be getting peranoid from all the Health care reform talk. I have tryed to rationalize this into, Due to heavy patent load the docs are trying to cut cornors and are not paying attention to each record. Or maybee Ttere was something showing on the PET Scan and they just wanted to let us have 3 months not to worry about it get through the holidays. We are in a holding patern until wednesday the 1st. My wife has a few questions but all the side effects and uglyness of cancer have her worn out. When they gave us the choice it broke her spirit and that is now having an effect on her as well. I think she has had all the doctors she can stand
I am so sorry to hear of the pain and suffering you and your wife have endured, only to have it come to this. I think your wife's doctors have added up the medical details and decided that God has other plans for her. If you think she has had all the doctors she can stand, so be it. Ask for a hospice referral asap so your wife can start benefiting from all the excellent help that's available.
I'm in a similar situation with my mother. The quality of her life is getting very marginal, and it's taking a team of family, friends, doctors and nurses to keep it going.
Your wife is so young. It's just not fair. But what are you going to do but hang in there?0 -
Hi There, a second opinionstretch7425 said:I forgot to mention that
I forgot to mention that after we called in about the pain she had a bone scan done. We asked about it and they said it was negative.
We live 75 miles from the clinic and when we got home my wives legs gave out and she fell, (was using a rolling walker) over the last week she is going downhill fast, She has fallen several times. Has to have help to get out of bed, dress, go to bathroom etc. She now on morphine 2x a day. I can see her legs getting worse daily now. She has also decided that she is putting it in God’s hands, He is the only true healer and is going to tell them quality of life.
I guess my problem/concern is how do the doctors know that it time to make a decision. The chemo she had definitely caused the nerve damage and I was told it damaged the limning of her stomach, Shouldn’t they at least check her digestive track? To base their decision based on a 4 lb weight loss over 7 weeks just does not make sense to me. Do any of you feel the sudden changes are due to the doctors breaking her spirit? I know that they are physical. At this time if there is not a change then I support my wife’s choice and agree with her, the doctors have had their chance, I just want to make sure it is cancer and not a nerve/digestive problem from the chemo. Should I try to find another cancer treatment clinic?
Hi There, a second opinion would bo good.
My 13 yr old daughter has brain cancer, 5 crainiotomies later docs told us there was nothing more they could do, well I am not ready to take that for an answer, so I went to Dana Farber in Boston mass for 2nd opinion and they gave us OPTIONS, something the other hosp did not give. My daughter is now on a whole new treatment plan. Her 1st MRI since starting with them came back with "no evidence of disease at this time" words we have been praying to hear. I agree with your wife, the docs work for the lord. He works through them. The only problem is that cancer works for evil and sometimes the evil works just as hard. Don't stop trusting in god and believe. Worry ends where faith begins. Good luck and god bless you both0 -
Hello Stretchstretch7425 said:Suspicious of Insurance
In a sad way it is good to see that me thinking that it was either insurance or the fact that this clinic has a heavy patent load was way off base. It is a Univeristy medical center which is all froms of government, fed, state and county. I have Tri Care Prime which is a retired Military. It has been good insurance but of late it does seem that they are restricting services. Or I may just be getting peranoid from all the Health care reform talk. I have tryed to rationalize this into, Due to heavy patent load the docs are trying to cut cornors and are not paying attention to each record. Or maybee Ttere was something showing on the PET Scan and they just wanted to let us have 3 months not to worry about it get through the holidays. We are in a holding patern until wednesday the 1st. My wife has a few questions but all the side effects and uglyness of cancer have her worn out. When they gave us the choice it broke her spirit and that is now having an effect on her as well. I think she has had all the doctors she can stand
My hubby was diagnosed with extensive sclc in April of this year. He is retired Air Force, and we also have TriCare Prime. First, I am so sorry for what your dear wife and you are going through. My best wishes and prayers are with you both.
We live in south central Texas and my husband is receiving his care at Wilford Hall Medical Center. We had choices as there is MD Anderson near by, as well as CRTC. Because of the urgency of getting chemo started, we went with the military hospital. We are blessed with a wonderful, honest, and energetic Oncologist! He receives his chemo from a loving, funny and informative staff. His first line chemo (cisplatin/etoposide) did about 75% reduction to the cancer in his body. Because it did well, he also received PCI (whole brain radiation). But, sadly, the cancer has recurred, and in less than 3 months since his first line chemo, so he is now on second line which is carbo/taxol. He also receives Zomeda as he now has cancer in some bones. His Oncologist ( a Capt. in the Air Force) has already discussed the next attack, and even the one after that, should this not work at killing more of the cancer and allowing us to share more time together. She is wonderful and does her homework and is not timid in her approach to fend off this monster.
Having said all this, I have been told, I have heard and I have read that when the chemo and or other treatments are harming more than helping they are not willing to continue to administer. I know that my husband's physical, mental and emotional conditions will also be an indicator to the doctors as to how to proceed. They always ask him how is he doing? It is not just being polite, I feel treatment is also based on a grading scale of how well the person is functioning. For instance, are they able to dress themselves, take care of their hygiene needs, things like that.
I'm sure that many places base things by the almighty dollar. How tragic and how devastating to us all that know what goes on in this battle. I don't know where your wife receives her care, but if you call TriCare, they may be able to assist you in other treatment centers. As I said, we feel very blessed. After researching extensively, I know that the love of my life is receiving the best treatment possible and the only thing that could ever make that change is if they run out of treatments, as his Oncologist has told us, she will continue to fight as long as he wants her to! All the treatments that have been given to him are identical to what MD Anderson would be doing. His Doctor is always looking for any clinical trials that he may qualify for.
Ultimately, I know that a day may come when even my love says, "enough". It will be very hard to hear, but I pray I am strong enough to respect his wish, hold him and tell him how much I love him. Thank him for all of our life together and for the hard fought battle he waged!
Best wishes,
Lucy0 -
Too late for second opinionmomsworld said:Hi There, a second opinion
Hi There, a second opinion would bo good.
My 13 yr old daughter has brain cancer, 5 crainiotomies later docs told us there was nothing more they could do, well I am not ready to take that for an answer, so I went to Dana Farber in Boston mass for 2nd opinion and they gave us OPTIONS, something the other hosp did not give. My daughter is now on a whole new treatment plan. Her 1st MRI since starting with them came back with "no evidence of disease at this time" words we have been praying to hear. I agree with your wife, the docs work for the lord. He works through them. The only problem is that cancer works for evil and sometimes the evil works just as hard. Don't stop trusting in god and believe. Worry ends where faith begins. Good luck and god bless you both
Thanks to everyone, I've been doing alot of reading and I see where it is normal to go thru the 1st round of treatment and get a green light, its in ramesion and in less than 3 months boom, its back. I've been hoping that we would be one of the lucky few but not this time. We are supposed to go the cancer clinic tomorow and let them know our decison, I had to call and let them know that she decided for quality, I explained that she has gone down hill the last few days and now can not use her legs or arms. I was hoping to just get Hospice started but looks like the still want her to come in to the clinic. I don't know if I can get her out of the house and into the truck to make the trip but will try. May God bless all of you and I pray that you may be one of the luky few.
Rick0 -
Hard decisionstretch7425 said:Too late for second opinion
Thanks to everyone, I've been doing alot of reading and I see where it is normal to go thru the 1st round of treatment and get a green light, its in ramesion and in less than 3 months boom, its back. I've been hoping that we would be one of the lucky few but not this time. We are supposed to go the cancer clinic tomorow and let them know our decison, I had to call and let them know that she decided for quality, I explained that she has gone down hill the last few days and now can not use her legs or arms. I was hoping to just get Hospice started but looks like the still want her to come in to the clinic. I don't know if I can get her out of the house and into the truck to make the trip but will try. May God bless all of you and I pray that you may be one of the luky few.
Rick
Rick,
So sorry to hear that it's come to making this decision. But it sounds like she really has gone downhill fast. This damn cancer is so hard to deal with. You've been a great husband to
her and guess you just have to respect her wishes if that's what she wants.
My husband died in March, and had only been sick 2 months so we didn't have to deal with making that awful choice. With the holidays approaching, try and enjoy it with her. God Bless you & your wife. I'll say a prayer that you find the strength to make it through.
"Carole"0 -
Rick. my heart and prayersstretch7425 said:Too late for second opinion
Thanks to everyone, I've been doing alot of reading and I see where it is normal to go thru the 1st round of treatment and get a green light, its in ramesion and in less than 3 months boom, its back. I've been hoping that we would be one of the lucky few but not this time. We are supposed to go the cancer clinic tomorow and let them know our decison, I had to call and let them know that she decided for quality, I explained that she has gone down hill the last few days and now can not use her legs or arms. I was hoping to just get Hospice started but looks like the still want her to come in to the clinic. I don't know if I can get her out of the house and into the truck to make the trip but will try. May God bless all of you and I pray that you may be one of the luky few.
Rick
Rick. my heart and prayers go out to you and your dear wife. Try to get assistance for transporting her to the clinic. These are the times we caregivers need to reach out and ask for help. Tell her you love her and you will be with her.
God be with you,
Lucy0 -
Prayersstretch7425 said:Too late for second opinion
Thanks to everyone, I've been doing alot of reading and I see where it is normal to go thru the 1st round of treatment and get a green light, its in ramesion and in less than 3 months boom, its back. I've been hoping that we would be one of the lucky few but not this time. We are supposed to go the cancer clinic tomorow and let them know our decison, I had to call and let them know that she decided for quality, I explained that she has gone down hill the last few days and now can not use her legs or arms. I was hoping to just get Hospice started but looks like the still want her to come in to the clinic. I don't know if I can get her out of the house and into the truck to make the trip but will try. May God bless all of you and I pray that you may be one of the luky few.
Rick
Rick,
I wish there was something I could say other than "so sorry" and "I'll be praying for you". I am, and I will, but news like this is always staggering. I CANNOT EXPRESS HOW MUCH I HATE CANCER!!!!
Sending positive thoughts that you and your wife will have peace and serenity as you continue in this difficult journey.
Penny0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards