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When Dr.'s say radiation and surgery are no longer an option

ElleP
Posts: 2
Joined: Aug 2010

My mom was diagnosed with uterine cancer about 2 years ago. She got a round of chemo. Then, about 5 months after that, the cancer had apparently metastasized into her lower abdomen. She got very sick so she got another set of 6 chemo sessions with taxol and carbo. During her chemo she was doing pretty well. She even gained weight, was active, walking 2 miles a day, eating well. Then her chemo regimen stopped about 2 months ago, and about 3 weeks ago she began feeling weak again, abdominal pain, now she has back pain and a stiff neck too (and no one knows why). The CT revealed that disease is still present in her abdomen and the Dr. said apparently the chemo didnt work on her. But my questions is

1) if it didnt work, how come she did so well during her second round of chemo?

2) why are her CA 125 down to 19 from 4000 if the chemo didnt work

3) where is the back pain coming from. The CT scan didnt reveal any masses on her spinal cord or back. The metastasis is in the abdomen only right now.

4) they say they cant do surgery because it is too many of them in her abdomen and because of her heart and that radiation isnt a possibility either. I wonder, why. Why no radiation, no surgery. There is a 7 by 3 cm mass in her lower abdomen. That could be easily removed. Cant it?

I am worried and dont know what else to do. She is very down, sleeps all day long, feels weak when she is up (even though her CA 125 is down) and her doctor doesnt want to do anything.

But I cant give up and leave it at that. What options do I have? can anyone tell me about the CA 125 levels ? The back pain? She is just lying at home, screaming at night about the back pain and we cant figure it out. She has no kidney issues or infection, no masses on psinal chord. She DID have a disk/back injury 15 years ago and been struggling with it and I assume the chemo damaged nerves and made it worse.

I am so lost. And i feel weary asking the doctor out of fear he will tell me something horrible that I cant bear to hear. Sometimes these doctors are tactless cause its not them who has cancer.

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

I know it is so hard to watch your Mom suffer. If you are not satisfied with what her current doctor is telling you, maybe you need to get another opinion. Maybe the other doctor would recommend a different chemo.

The tumors in the abdomen could be causing the back pain, by the tumors putting extra pressure there. If there are multiple tumors, they could be causing even more pressure.
If there are multiple tumors, they cannot radiate all of them. And you said her heart would not allow the surgery.

Have they given your Mother pain medicine. That is what she needs most now. To take the pain away. She should not be screaming with pain.

If another doctor says chemo or radiation cannot be given, it may be time to check with Hospice to help your Mother be more comfortable. Hospice is a great assistance to family members too.

You and your Mom will remain in my prayers. In peace and caring.

llight
Posts: 99
Joined: Feb 2010

Elle,

I'm so sorry to hear about your mom. I agree with Ro that you might want to get a second opinion and get some of your questions answered. Here are some links on how to find a gyn onc in your area. I hope this can help.

My thoughts are with you and your mom. --llight

Find a Gynecologic Oncologist – this is the referral link from the Society of Gynecologic Oncologists, a professional organization
http://www.wcn.org/findadoctor
Type in your zip code. See The Society’s Membership; not all board certified.

American Board of Medical Specialties – free registration. Worth it!
https://www.abms.org/WC/Login.aspx
Check that your doctor is board certified in gyn oncology.

U.S. News Best Hospitals Data: Cancer
http://health.usnews.com/best-hospitals/rankings/cancer/data

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

You may need to make an appt to talk to your mother's Doctor alone. Has she signed the medical release form so you can get information.

If she is in that much pain during the night, page the Doctor on call! That is their job, like my daughter says, "that's what he signed up for." Her roommate is an oncologist andnever minds when her patients call her.

Her tumors may be causing the back pain. I had small peritoneal cancer but it pressed on a nerve causing me terrible back pain; referred pain. This pain has to be controlled. You are her advocate now and don't be afraid to assert yourself. Describe the pain in detail to the Doctor. Keep a pain diary and tell them you are keeping a pain diary.

I don't know if they remove the tumors. I would advise second opinion. She may not be able to handle another surgery. I took doxil which killed my cancer causing the pain, after the second treatment the pain had vanished. Sometimes we take it to control pain by shrinking the tumors.

I agree hospice is a wonderful program if she is ready for that step. Pain control is their priority. But pain control should always be a priority.

Please let us know when her pain is controlled. I know how terrible it can be. My prayers are with you every night.

Diane

Diane

ElleP
Posts: 2
Joined: Aug 2010

thanks everybody. while I do appreciate all the caring and loving responses, no one is answering my questions. How can her CA 125 be down and she still be in such pain? It hasnt spread anywhere else. Her doctor discovered she has arthritis in her back and she has a UTI infection and needs antibiotics.

And no ladies, hospice is NOT a wonderful thing. That's where you go when you want to practice dying. She is 67, not 80 years old. Hospice is where you throw away someone so they can die and you dont have to bother. I cannot believe you folks would suggest such a thing and call it "wonderful". Whats so wonderful about being thrown away by your family? Would you enjoy it if someone did that to you? I am trying to help her get better. She has no reason to have cancer. She is the healthiest woman I know. we dont even have ONE cancer case in our family. She never drinks or eats or took hormone pills or hormone replacement therapy. Nothing. This is the work of evil - if such a thing exists.

Anyway no one is answering my questions, such as how can she gain weight during chemo and do so well and then deteriorate only a month after chemo is done, and everyone keeps telling me here to send her away to die. Are you kidding?

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I think your questions can be answered. However, it may take some effort to get the answers. Talk to your Mom. Encourage her strongly to get another opinion. A member sent you a link to look for another doctor. Try it.

I think you might try looking into finding a Cancer Center near you. A place where they specialize in treating cancer. If she is already going to one then, keep asking the questions.

We aren't doctors. Just people who have experienced cancer firsthand.
Many of us have had success with chemo, radiation, and surgery. Keep encouraging her to fight.

As for Hospice. I have to be honest. If it is my time I would use Hospice. But, only after I had exhausted all my options. I think the sweet lady who was recommending it was trying to help.

Let us know how it is going for you and your Mom.

bea-mil's picture
bea-mil
Posts: 106
Joined: Jun 2010

Hello Elle
Maybe this will help:
"Back pain is not a typical side effect of most chemotherapy drugs. However, it is a very common side effect of medicines that are sometimes given after chemotherapy to help keep the white blood cell count closer to the normal range. These drugs are called granulocyte-colony stimulating factors (their common names are Neupogen and Neulasta). They are given by an under-the-skin injection, generally one or two days after chemotherapy, and it is very common for patients to experience bone pain for a few days afterward." -
http://www.everydayhealth.com/breast-cancer/treating/hensley/side-effects-of-chemotherapy.aspx

and:
"Back pain can occur with bone metastases. Bone pain has been described as dull and aching, except when it is associated with muscle spasms, in which case the pain may be sharp and excruciating. Compression of the spinal cord occurs in some bone metastasis patients and is often excruciatingly painful. Cancer cells may spread into the fluid in the spine, causing neck and back pain, and stiffness amongst other symptoms." -
www.paineurope.com/index.php?q=en/book_page/cancer_pain

Maybe she should do a bone scan? I also know that acupuncture is commonly used to relieve back pain. Why not to try it if medicines are not helping?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I can feel your angst and anger clearly in your posts. The sad truth is that when uterine cancer matasticizes, regardless of treatment, almost always the cancer is now seeded too broadly to ever be completely reined back in. I have recurrent uterine cancer and it is considered uncurable and a condition that must now be managed to allow me to stay symptom-free and have a good quality of life. CA125 can be totally unreliable. (Example: I had a CA125 of 45 when my CT/Pet showed no evidence of disease after my last 10-round cycle of weekly taxol), even though when I was in remission the 1st time my CA125 dropped to 11.

You ask how she can do so well on chemo, and deteriorate so badly when she is released from treatment. I can tell you that I sometimes feel BETTER after my weekly chemo infusion, if the node under my arm has been hurting, because the chemo knocks it back. But the cancer quickly advances when the chemo stops. Chemo can help keep you symptom-free, and that feels better than cancer progression dependent on where the cancer is making in-roads. Many times chemo and radiation are used palliatively, given to reduce pain.

If the cancer has also metasticized to the bone (a fairly common recurrence site), that progression may not be apparent on a CT/PET and a bone scan may be in order to rule that out. They are treating the UTI and arthritis, right?? The pain may honestly be unrelated to cancer progression as UTIs can happen when your immunity is comprised by the chemo. Did she had pelvic radiation? That can cause stress fracures of the bones which are incredibly painful and that should be ruled out if that hasn't been.

I agree that I wouldn't yet be ready to accept 'hospice' as my treatment plan; I'd be shopping for another opinion and a more aggressive approach to bring your mother back to a better quality of life, even if that life is interrupted by regular chemo. But hospice really is wonderful when you reach a point where the end is inevitable. I am counting on hospice to help me and my family get through the last few months. But NOT YET. & it doesn't sound like you are ready to go there yet either. But please keep your mind and heart open to it for later. & see if you can get another oncologist with a different plan for your mother.

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

It is not " throwing away someone to die, so you don't have to bother". It is helping the person be free of pain and anxiety, and to live what time they have to the fullest. Hospice does all they can to make the person comfortable. You said your Mother was screaming with pain. You said the doctor said chemo and radiation were no longer an option.

I would want my family member, or even myself to be comfortable and "not screaming with pain". Some physicians do not know how to control the pain, or other problems patients may have. Hospice has expertice in these areas. Their main focus is to make the patient and family comfortable.

Hospice is not a place to go. Hospice personell come to the home so the person can remain at home in familiar surroundings.

I am sorry that you are offended by the suggestion of hospice. I know you are trying to help your mother get better, but sometimes that is not possible. Hospice helps family get through this difficult time also. You have a right to be angry over your Mother's diagnosis.

None of us has a reason to have cancer. Many of us thought we were very healthy and did things to promote health before we too got the dreaded cancer diagnosis. But we got cancer anyway.

I hope that the arthritis and UTI are the reasons for her back pain, and with the antibiotics she will feel better.

I hope you will take these comments in the way they were meant, to help you and not be hurtful. As someone said, we are not experts, just people who have been through surgery, chemo, and radiation ourselves. We don't have all the answers. Maybe is you get a second opinion you can get some of the answers to your questions. In peace and caring.

Cindy Bear
Posts: 560
Joined: Jul 2009

Hi Elle. It's heartbreaking to read about your mother and I think we can all sense your fear, anger and grief. I could have written your post in June 09. I lost my mother 4 months after being diag. with Stage IV end. adenocarinoma. She was 79. Not ready to die. Like your mother, very healthy, active little lady. Never smoked, rarely drank, loved to walk and work in her yard, ate well, never took hormones No known risk factors. We don't know our family medical history that well, but feel it was something genetic. Her father and a brother had prostate cancer, a great aunt had some kind of cancer. I don't pretend to have any answers and I still rage at times about the unfairness of it all. I'm with you, it's evil. I would def. get a second opinion. The CA-125 is not valid for alot of women. At stage IV before any treatment, my mother's was a 58. The lowest it got was a 21. Two days before she passed, she was in her yard picking up twigs, tending to her flowers, talking to the neighbors. I do know that cancer has to be a certain size to be picked up on a cat scan. I know of two cases where persons had clear scans, but when they had exploratory surgery, they were found to be riddled with cancer. That's sadly, the nature of the beast. My mother didn't live long enough to have hospice care, but I've heard from others that they are wonderful. They will come into the home and help with things like bathing and pain meds. Good luck with whatever you decide . Hugs, Cindy

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I love to think that I might be out in the garden grooming my borders and enjoying my flowers 2 days before I die, that I might really feel even that good so close to the end. That's a very comforting thought for me, that the small joys of life could still be mine almost up until the last day,...the sun and wind on my face, the smell of the blooms and the grass, a little chat with a neighbor. Sounds nice. Thank you for that little blessing before my bedtime tonight.

(You never know what you might say that resonsates in a good way, I guess)! Thanks again.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Please let us know how she is doing. Like Linda, I plan to use hospice when and if I get to that stage but NOT NOW. They control pain and help you live your last months in peace, pain free. They come to your house to help. But it may not be what you want. I wonder what your mother wants.

Let usknow if the pain is controlled yet. I prayed for her last night. I know how hard it was for me when my Dad got pain at the end, I promised him we would control it and I gave him morphine with the help of hospice.

Sometimes they have grief classes for the family. I think perhaps a therapist could even help you; the load on your shoulders is unbearable and too much for one person. You are trying so hard. I am glad you could talk about your anger and fear here. It's OK to let it rip; that's what we're here for.
Love,
Diane

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