• How to find a doctor that is willing to fight the cancer with you

    Asked by klcd on Friday, March 22, 2013

    How to find a doctor that is willing to fight the cancer with you

    Stage 2b. Radiation and chemo failed. Doctor says it is over his head and sends her to Moffitt. Advised to get pelvic exenteration. Surgery aborted mid-procedure because cancer spread to lymph nodes. Moffitt doctor gives her 6 months and suggests going back to original doctor for chemo. I feel like the doctors have given up on my mom and now she wants to give up too. I am young and was taught to respect my parents' wishes, but I feel like it is too early to give up. My mom is in constant pain and has to urinate every hour so never sleeps well. All the doctors do when she describes her problems is give her more pain meds and sleeping pills. Nothing is helping. At this point she does not see the point in living if she has to live this way. Can anyone tell me how to find a doctor or someone who will help my mom fight and give our family some hope.

    7 Answers from the Community

    7 answers
    • Nomadicme's Avatar

      I'm sorry you and your family are experiencing so much pain.

      Have you tried doing a search on clinicaltrials.gov? You could also talk to one of your moms oncologists about clinical trials.

      over 3 years ago
    • SueRae1's Avatar

      Hugs and prayers. You may want to go for a 2nd opinion, but that would mean going to another state. You also might want to looking into finding an oncologist you feel comfortable working with at Moffitt.

      I am sorry that you and your mother have to go through so much physical and emotional pain. Try to figure out what is best for your mother, as hard as this may be ask yourself what quality of life does she have, would more aggressive treatment really be in her best interest. I know that this is a very difficult thing to do, but perhaps the doctor is correct and hospice care is the best option for making your mom the most comfortable.

      Ask a social worker at Moffitt for advice and referrals so that you can make an informed decision
      about your mother's treatment plan going forward. Watching a loved one in pain is very hard, I still remember how I and my siblings felt during both our parents final illness.

      over 3 years ago
    • AlizaMLS's Avatar

      Dear kicd,

      I'm Aliza, a Breast Cancer patient and Medical Librarian (retired) who offers research and referrals to folks on this site and elswhere. I don't offer medical advice because as a Librarian it's against our professional ethics to do so (it's also illegal {it's practicing medicine without a license}]). So I'm here in my professional capacity to help people and refer them to doctors, institutions, hospitals, agencies, etc.

      I am however permitted to speak from my personal experience as a Cancer patient and also from the experiences of family members and friends who've been Cancer patients (there are too many of us).

      My late father had CLL (Chronic Lymphocytic Leukemia)). He had it for about 6 years. It wasn't painful, it was tiring. He could go about his normal business for this first 4 years. The last 2 years were not too great. He needed chemo (which he weathered fairly well [it didn't make him nauseas or bald]). The last year he was in and out of the hospital often because the chemo made him so immunocompromised he began to get pneumonia frequently so he needed to go to the hospital for them to put him on antibiotics and remove the fluid from his lungs. Then after a 3 week hospital stay, he'd go to a (really nice) rehab (overlooking the ocean) to relearn how to walk, climb stairs (which he needed to do if he wanted to come home). He'd come home , start chemo, do that for a while and then the whole cycle would start again. After a year of this, he was in rehab, he was getting ready to come home-I'd visited him (it was a Sunday) and Monday morning when the doctors made rounds, my Dad had a tiny cough-they don't allow that in a rehab. Back to the hospital. My mother phoned me to tell me. I wasn't alarmed-it was the usual. By nightfall, things were bad. My mom phoned again to say things were not good and that my Dad did not want to go through this anymore. He made a really good fight and he was tired. Sometimes the kindest thing you can do for someone is not to make them go through more pain just to keep them alive for the sake of going through more pain and discomfort just so that you have them around. This is a quality of life issue and it sounds like your mom's made up her mind. I think you should honor your mother's feelings. If her first doc sent her to a larger hospital and the doc there refused to operate because the cancer has spread to the lymph nodes, it says something that you may be ignoring. It sounds as if you got your second opinion.

      I think if you haven't gotten your mother to write a DNR, she needs to do so as well as a living will. Get ahold of an ElderCare attorney asap-I'm sure they will make a hospital visit under the circumstances. Be sure that your mother has a Last will and testament (be sure if she has jewelery, furniture or ornaments/paintings she wants to designate for certain people that she does so-even furniture-if your Dad's still alive, she can give him a listing to include in his will., If she's not enrolled in a hospice program, enroll her in one. That does not mean she'll die next week. Hospice care opens up all kinds of palliative care options for your mother to make her comfortable and pain free (underline pain free). You must realize that your mom is going to die at some point.. Non of us live forever. I lost both my parents in the last 3 years. It was very difficult and then I was diagnosed with breast cancer last summer.

      I know this is not the news you want to hear. I could refer you to any of the larger cancer centers in the country - Johns Hopkins in Baltimore, MD Anderson in Houston, Memorial Sloan Kettering in NYC, Dana Farber in Boston, but it sounds like a futile effort after hearing what you mentioned. I do understand though and I hate the thought of this woman going from place to place only to hear what she's already heard.

      When I saw my Dad for the last time in the hospital - he was having great difficulty breathing, I'd come in at 2 am. I lived 12 miles away, across a bridge from where my family lived. He recognized me and waved. He was sitting up and had an oxygen mask over his face. He wanted to say something to me, so I took the mask off. He looked at me and said "water" (oxygen dries out your mouth) so I got him a glass of water. I also asked him because he was alert if he wanted a blood transfusion - that would have improved him enough to continue the cycle, but he knew he'd had enough and it sounds like your Mom's reached that point. Sometimes you have to respect that. I'm sorry to be the person to give you this kind of advice. You will be ok. It will take time. Be kind to yourself.

      I think the best thing you can do for yourself and your mother is to contact CancerCare and speak to one of their Social Workers. They're specially trained to deal with the needs of only Cancer patients and their caretakers. Other people will respond to this post with different ideas and think I've done you a disservice, but I don't think so. I think suffering needlessly when there's no good alternative in sight sucks!! It sucks that you will lose your mother but you will know that you were humane in not prolonging her suffering.

      Best of luck in a difficult situation.


      over 3 years ago
    • nancyjac's Avatar

      I think you may be looking for the right help but in the wrong place. Oncologist and surgeons are medical specialists but they are not trained or qualified to provide psychological or family counselling. I would suggest your mom ask her doctor for a referral to a psychologist and perhaps also to a pain management specialist.

      As for the medical guidance, from what you have posted, her doctors seem to be right on the mark. The discovery that her cancer has metastasized through her lymph system now makes it Stage IV cancer. She has already had first line chemo and radiation and second line chemo was recommended, so I don't think her doctors have given up on her, but rather are providing a realistic and appropriate protocol.

      I understand that your are scared and concerned, but the best thing you can do for both your mother and yourself is to support you mother in whatever decisions she makes. Fighting her wishes just adds to the stress and pain for the both of you. You don't want to spend the rest of your life regretting that you didn't make the most of whatever time you have left with your mother.

      over 3 years ago
    • carm's Avatar

      Well I am an oncology nurse who specializes in gyne cancers so I have a different take on your situation. I can't tell you what to do, but I can tell you what I did. I have had 3 patients with cervical cancer who had the same situation. However, all 3 were told there was nothing left to do. One was given an exenteration (hate that surgery) and then told nothing left to do. I sent their records to Dr Burzynski at the Burzynski clinic. With the help of their oncologists, we persuaded him to take them on into his care. One patient changed her mind and decided to go for treatment in Tijuana, which proved unsuccessful and now is trying to get back to Burzynski. One didn't make it to him because of radiation side effects (paralyzed from effects of too much radiation therapy) and her husband put her in hospice. The patient with the exenteration did go to Burzynski. She came to him with pneumonia that she contracted from the hospital she was in before getting to Burzynski. It was low grade so not detected. She was started on his drug and went home with his drug. The pneumonia came back and caused her demise. However, she died CANCER FREE. So his drug, in my opinion, works. I am not suggesting that you go there, only suggesting that there are oncologists out there that will take patients others might not. I chose Burzynski because I have been following his work for years and from a biological and genetic standpoint, it makes sense. If she wishes to continue her fight, then you have to find a doctor whose line in the sand is a little further down the beach. I disagree, with respect, that because it is in lymph nodes, it is a stage IV. We expect cancer to get into lymph nodes. A typical 1.5 cm tumor typically sheds 3 to 5 million cells into the blood and lymph system every 24 hours. Most are destroyed by the immune system but some get thru at detectable levels. All that means is that she is not a candidate for surgery. The fact that the surgeon sent you back to the oncologist says that. It does not mean that nothing else can be done, just that there is nothing else THAT oncologist is willing to do. With lymph node involvement it comes down to location. Only when it reaches non regional nodes does the stage advance. Get second opinions and if you need help, I will send you my email address and I can assist you in that task. If she wishes to keep fighting, don't take her out of the ring. Lace her gloves tighter and let her throw her best swing. Good luck, Carm RN.

      over 3 years ago
    • CAS1's Avatar

      Cervical Cancer Patients More Likely To Survive If Treated At High-Volume Medical Facilities

      This is a potential link with information on choice of facility

      over 3 years ago
    • kevin_ryan's Avatar

      I had a surgeon who told me that i was so far gone that I should just go into a hospice and not bother with surgery. This was 6 months ago and I am still here, so glad i didnt listen to him.
      One thing we did was go to the University of Michigan. They have a unit that specializes in rectal cancer that has spread through lymph nodes to the liver, which is exactly what I have. They were able to recommend treatments and passed this back to my oncologist who is now treating me according to their direction.
      I dont know where you live, but you may have a similar institution nearby. It cost me about $250 for an out of network experience, but that was it.

      good luck

      over 3 years ago

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