Mom wanted no biospy or treatment

[ConnieH]

Hi I am new to this site and was just wondering is anyone can tell me what to expect. My mom is 75 years old and is handicapped, she walks with a brace on one leg and with crutches. She had polio as a small child. She has been battling post-polio for years which weakens your muscles. We also just lost my dad suddenly in June 2005.

She went to the doctor for a cold in March, 2006 and the doctor was concerned about a mass he saw in her xray and immediately sent her to the hospital for a CT scan. The CT scan came back with an indication of bronchocarcinoma in the left lung with mets to her lymph node and adrenal gland. The doctor told her she most likely had only 3 to 6 months. She immediately decided she did not want a biospy or any kind of treatment. So we do not know what type of cancer or even confirmed for sure that it is cancer.

It has been almost 5 months and her only indications of the cancer is a pain in her ribs that sometimes shifts to her back. She says it doesn't bother her all the time. She just cannot lay on her left side or back without extreme pain. She says she is losing more strengh from her left arm. She is also having more pain than usual from her joints. Two days ago she said she had severe pain in her left arm, chest pains, pain in her neck and back pain. She thought she was having a heart attack. But since that time her pain is minimal. She has never liked to take meds and has a very high tolerance for pain. She has been able to control her pain with just taking tylenol.

Does anyone know what I can expect from any of these symptoms.

[Donna G]

I can't answer your question but I hope your Mom is on antidepressents. With her polio history problems, loss of her spouse etc sounds like her plate is very full.

Donna G

[ErinC1973]

Connie,

I'm so glad I found your post. My mom had polio, and PPS which left her pretty much wheelchair-bound for the last 3 years. She just passed away in February.

Now, my mom was just 64, but I feel I have to tell you that she lost my stepdad in 1999 to lung cancer, then was diagnosed 7 weeks later with stage IIA breast cancer, which she fought and won. In 2001 she was diagnosed with PKD (polycystic kidney disease) which ultimately put her on dialysis in February 2004. She was feeling so much better on dialysis, things were going really well, when she was diagnosed with lung cancer in November of the same year. Each time, my mom put up a fight and did a stellar job. She moved in with us in 2003 and we were her primary caregivers. We did have help; I was lucky to have my best friend as hired care for her during the week, and she also helped me around the house. She had dialysis three times a week, and once a month for three days (M-W) she went to chemo 80 miles away. She had fifteen good months with us, some good scans, and we were so happy to have here here to be surrounded by family constantly.

When my mom was diagosed with breast cancer, I thought, "Oh, my God, she can't do chemo, her body can't handle it." We were lucky in that she was able to have just a lumpectomy and radiation, which she drove herself to every day. When we found out about the end stage renal disease, I climbed into her hospital bed with her and we held each other and cried. When the crying was over, she said, "I'm going to fight this." And she did, and her numbers stayed great, she mantained some kidney function and stuck to her diet so she was healthy. When she was diagnosed with lung cancer, I thought," well, this is IT." And she surprised me by saying, "I've got to fight this!" So, she survived the chemo. In fact, they gave her chemo through the same port as her dialysis. Each time she was hit, she got back up. And the chemo only put her in bed for half a day out of the month with nausea/vomiting/fatigue. She lost her hair (something she feared) but she called her hairdresser and he brought custom wigs over for her, which he cut and styled, and she got so many compliments on her "hair" that NO ONE knew it was a wig!

My mom was by no means a superhero. But she was a super woman in my eyes. I was surprised at how much she could plie on her plate and devour, but it just didn't seem like giving up was an option to her. So it absolutely CAN be done. The cancer center my mom went to treated her like a QUEEN, and she came to actually ENJOY her stays there.

If your mom has made the decision to not seek treatment, it is her own, and I suppose you do have to accept that. My mom and I saw a counselor at CTCA who told me I had to try as hard as I could to stop controlling her life. I don't think I was ever able to really stop doing that, but I know it's good advice But I tell you my mom's story so you can see that it IS possible to fight this beast. It is exhausting, emotionally hellish, yes, but doable.

Please PM me if you need to talk. You and your mom are in my thoughts and prayers.

[Littlegirl]

Connie,

I'm sorry you and your mother are going through this, especially after recently losing your dad. My mom is 78 and she did not want to receive treatment either when she was first diagnosed. Then we found out her cancer was not as bad as we expected and between her doctors and us kids it was fairly easy to convince her to start some treatments. She got thru the radiation and low dose chemo but decided that was enough and did not want to do the high dose chemos the doc recommended. My mom is also one to put up with alot and not complain so we knew she was feeling really bad toward the end of treatment.) We had to accept that this was her decision to make and respect it. I know its hard to do.

Please try to see if your mom will see someone about pain control. (My mom also was notorious for having a weak stomach and having problems taking meds, but she has been on lots of new meds since her diagnosis and has been tolerating them well.) If she does not want to see a doctor I'm sure hospice would be of great help as well. I think alot of times our parents just ge used to the pain and live with it. If you could minimize this her time left here on earth would be much more enjoyable.

Good luck with your journey.

Karen

[ConnieH]

Well it has been almost 5 mos since we were first told that my mom had lung cancer and could only possibly have 3 to 6 mos to live w/o treatment. My mom does not have a regular physician except for her cardiologist who she has been seeing every 6 mos for 14 years and actually they have become very good friends. When my mom was told about the cancer, she actually had a regular scheduled appt with her cardiologist the next week so she took the CT scan results to him to get his response. Actually his response with tears in his eyes was "are you sure you do not want to get treatment" and her response was that she did not want that. So he agreed to take on her care from that point on.

All that said, my mom went to the doctor today and of course she didn't want to tell him everything. She did tell him that she was having some occasional pain in her rib area that goes thru to her back. She didn't tell him that she felt like her left side was deteriorating or that her left breast had almost deteriorated away. But with what she told him he advised that he thought her pain was from skeletal with arthritis. He said that she would have pain if it had got into her bones but the only way to really know that for sure is to do a bone scan which mom will not agree to. I asked him if the pain could be from the mass in her lung and he advised he does not think that is what it is and that he doesn't think that it has got into her bones. Also she has lost more weight. When she went to the doctor in September 2005 she weighed 115 lbs (with 5 lbs being her brace). In April 2006, she weighed 100 lbs and she now weighs 96 lbs including her brace.

The doctor has said many times that her best medicine is her attitude b/c she has a wonderful attitude. What I am wondering if he is just trying to keep her attitude the way it is by giving her response she wanted to hear and am I just overreacting about the pain she is experiencing even though this pain has only been occuring for about 3 mos.

Sorry for such a long post.

[RandyW]

You are not overreacting by any means. It is so hard to watch someone go through this with no treatment. Your Moms pains will get worse unless she seeks something to stop or at least control it. I am not sure what to recommend but I think she will want or need something soon because the pain can become unbearable. This is a large part of Cancer is Pain Management. She may want to trty over the counter at least if not something stronger from her cardiologist.

Click on this Link For redirecction with number and email Cancer center america;

http://www.cancercenter.com/bone-cancer ... gement.cfm

This is a link For alternative treatments for cancer Pain and some ideas non narcotic;

1) http://www.cancer-pain.org/treatments/alternative.html

2) http://www.amfoundation.org/pain.htm

Do not worry about the length of a post Never too long. I hope this link and Info will help. If I can help post for me or PM Me with what I can do for you. Sending Prayers.

[Linda661]

Connie:

It's often hard to support a loved one in the decisions they make for themselves, but that's what we have to do out of our unconditional love and respect for them -- doesn't mean we can't help gently guide them in the rationale for those decisions, however, if they will listen at all to us. What your mom has endured in her life is monumental -- what a lady full of grace, obvious inner strength, and tenacity!

I am concerned about the pain issues you describe. High tolerance for pain or not, sooner or later it most likely will overcome her tolerance threshhold. Even if your mom doesn't want treatment, it would be wise of her to do some non-invasive diagnostic tests like CT scans or PET scans to find out what's causing problems where, even if no one ever knows what kind of cancer (if it is) it is.

I really don't get why she won't even do a bone scan -- if for nothing else, it would help others know how to help her pain for the time (if it comes) when she can't tolerate the pain any longer. Pain management does not provide curative-type treatment, only does what is necessary to control pain.

And, as someone else mentioned, has hospice been considered as an option? They also can/will provide pain management as necessary -- their goal is to provide quality of life support to the patient and family while the patient's body goes through its natural processes of life-limiting illness. The patient remains in control even on hospice....but at least some knowledgeable support would be there immediately for the moment the pain is just too much.

Hugs,

Linda

[ConnieH]

Thanks for your responses. After the doctor visit my mom had been doing pretty good according to her until today. She called me wanting me to come and talk about things. After I left her this morning, she experienced the severe pain in her chest and back. She thought it was a heart attack so she went ahead and took her aspirin and went to sleep (which usually helps to releave the pain). She woke up a couple hours later still experiencing pain and called me.

She said it wasn't as bad as it had been but it was still hurting. I went over there and b/c she still doesn't want any pain meds or she didn't want to go to the hospital, I made her take her usual tylenol. I fixed her some lunch and she felt alittle better and decided she wanted me to leave so she could sleep.

I spoke with her later and she was still hurting but she said it wasn't nothing she couldn't handle until bedtime to take another tylenol. I begged her to let me stay with her tonight but she refused. I know at some point I am going to have to insist but she gets so upset.

I am going to call the doctor tomorrow to let him know what is going on. My mom is adamant about not taking pain meds. With her being handicapped and alittle unsteady on her crutches when she is not wearing her brace (she only takes it off at night)she does not want to mess her head up with pain meds. They do hit her hard. She said that is going to be the last resort.

It had to be bad for her to tell me (she doesn't want anyone else to know). I guess this is the beginning.

Oh and about Hospice, we had a family member and a close friend to the family to both have bad experiences with Hospice so my mom is against it. Fortunately, I work in emergency services and have several friends who is willing to administer any meds that her doctor prescribes.

Thanks for listening.

[Linda661]

OMG Connie, this could be a really tough one.....while I was reading your latest post, I was thinking it's time to call in hospice and then I saw what you said about no hospice for your mom......

I just don't know what to say right now that would offer any comfort or help. Do your best and that's always good enough, no matter what anyone else says anyway.

Hugs,

Linda

[RandyW]

Links That may help with information Click to be redirected;

1) http://www.cancer-pain.org/treatments/alternative.html

2) http://www.cancer.realage.com/topics.aspx

3) http://www.healingcancernaturally.com/c ... elief.html

I am not endorsing any of tese possibilities but there is some info available. I do not think this is garbage. Definitely consult with Moms Dr before starting any of these if you chose to try these. If I can help with anything drop me a PM. Sending Prayers for everyone.

[ConnieH]

Thanks for the posts. Mom was able to manage her pain pretty well on Monday with taking her tylenol every six hours but she felt like she was taking too much so yesterday she decided not to take any during the day. Big mistake, she suffered for it last night. But since then, she has finally decided she is going to take the tylenol regularly until it doesn't work anyone and then she will take the pain meds that her doctor prescribed for her. Today has been a good day. At this point, we are going to take it one day at a time and just control the pain as it comes.

She is so strong and a remarkable women. I am so proud to be her daughter. Thanks for all your prayers.

[ConnieH]

Well it has been awhile since I posted last. The last time I was on, Mom was experiencing a considerable amount of pain but since that time she has managed that pain with meds from the doctor but she is now back on her tylenol. She has completed and printed the book she was writing about my dad. She told me that she is only experiencing a few small pains occasionally but nothing she can't handle. She did say she is getting more tired each day but when her friends visit they think she is the same old "Dottie". She has such a wonderful outlook on life and blesses everyone she comes in contact with. It has been 7 mos now since they diagnosed her and she seems to be ok. She has lost down to 93 lbs with that 5 lb brace on but talking to her you wouldn't even know anything is wrong with her.

I still get afraid sometimes b/c she doesn't seem to be really getting any worse so I sometimes have a false sense of security about her diagnosis and it makes me think she is going to be ok.

I just thought I would give an update. Thanks for listening.

Connie

[RandyW]

It is good to hear from you and I amglad there seems to be a little normalcy right now and things are OK. take each day as it comes. Sending Prayers for continued blessings.

[Frank Lamb]

Connie,thanks for the update on your mom.She seems to continue to amaze everyone.Keeping her in special thoughts.

[ConnieH]

Well I thought I would give everyone an update on how things are going. Mom has been doing pretty good, she is managing her pain pretty good. She has not been getting out very much and can't stand large crowds at home or out in public, it makes her alittle nervous. Today has been a good day, she has come up with a project for my daughter and it has made her more perky then she has been in a few weeks. I feel like that she needs things ike that to occupy her mind so she is not concentrating on her pain.

It has been a rough couple of weeks for some of my friends. My boss lost if father to lung cancer last Friday and another co-worker that his dad was diagnosed with lung cancer the same week that my mom was is not doing very well. He doesn't expect his dad to make it til Christmas. His dad chose to take treatments where my mom didn't and he told me yesterday that my mom is winning the bet by making the right decision not to have treatment. It made me feel so bad, I told him that my mom made the right decision for her but that is a decision for each individual person.

Thanks for the listen.

[ConnieH]

Well its me again with an update. Since Christmas mom has been having continuous pain and now difficulty breathing. But she still says she can handle it b/c it is like the pain she has been living with for years in her shoulders. She has a doctor appt on Tuesday and we are going to talk with him about getting her something that might make a breath alittle better. She is even willing to talk with him about some other kind of pain meds. Her fatigue level is tremendous. She is still in wonderful spirits and gives anyone that speaks with her a blessing. But I don't know what all this means. Could she still live with this difficulty breathing for a long time. I am so worried about her but she is still so independent and won't let me just take care of her. Thanks for listening, it just helps getting it out.

[Linda661]

Connie:

I'm so glad you posted an update -- I've been wondering how things were going for a bit now.

I'm hopeful that the doctor appointment will provide a solution on the breathing issue and pain level. My own mom got super fatigued and just chose to sleep alot before we ever even got a dx. and that part (the avoidance) is bothersome when it comes to getting some real comfort and quality of life help going.

There are palliative measures out there to help with this. It's all gonna' depend on what your mom will allow based on what the doctor has to say.

All the best to you. Do keep us posted and let us know how we can help along the way,

Linda

[ConnieH]

Well Mom went to the doctor last week and I left feeling like it was a total waste of time. I realize now that he is only there to prescribe Mom medicine as she needs it and that is all. He doesn't even talk about the cancer and only blames her difficulty breathing completely on her smoking and nothing else. I understand that I am going to have to deal with this b/c my mom doesn't won't to do anything else except treat the symptoms with as little medicine as possible.

With all that said, I sent my co-workers who are paramedics and emts to visit mom to check her O2 sat to see if she was getting enough oxygen b/c her breathing was getting really bad. The paramedic found her right lung congested (the cancer is in her left lung) and told her she was going to have to do something to break up the congestion. I finally convinced her to let them do breathing treatments on her to loosen up the congestion which seems to be working. The paramedic recommended to mom's doctor to prescribe the meds and machine for her to do her own treatments.

Mom told me yesterday, she feels like the maybe the difficulty breathing was going to get her before the pain b/c she can deal with the pain. She has been very difficult trying to convince her that she needs these things to keep going or she will in up in the hospital. I feel like sometimes I am raising another teenager b/c she won't listen to anything I say. She tells me she doesn't feel good at all most of the time but if I tell anyone that I am just overreacting of course. My mom has never made a very good patient so please pray for me to maintain my patience. I was teasing her the other day b/c the doctor prescribed her some meds for anxiety and she couldn't figure out why he did that and I told her I believe he actually prescribed them for me. She actually found that very humorous, maybe she knows how cantankerous she can be. Thanks for listening again.

[Nick C]

I know this is exhausting for you. Know we're here for you.

[RandyW]

Prayers and Big Warm Blankets and Hugs tonite and always. Let us know how we can help and whenever we can help or just stop in and Vent. Whatever you need to do to feel better. Sending Prayers tonite.

[Larry]

Connie you have a very brave and wonderful mother but then again you knew all that. Connie i do not know what type of cancer the gentleman had but this particular person was given 3 month's at best to live and lived on for 8 more year's with no treatment ever.......

[ConnieH]

Well mom has been having more bad days then good. She has been experiencing alot of pain in her chest and back. She also has a aching, burning pain in her left arm that she describes as worms crawling causing the pain (Has anyone ever heard of this?).

She did try a new pain medicine this past weekend that made her like herself again, happy. But when it wears off she is back to not wanting food and getting more depressed which is not like my mom. She still of course won't take the meds everyday so far one every other day, but I guess anything is better than nothing. She at least is talking to me more about the pain so it must be getting bad. She just told me that she thinks the cancer has moved to her right lung b/c she is having as much pain on that side as she has in the other.

I don't know, I hate this not knowing what is next. I wish there was something more I could do. Love and prayers to everyone.

[Connie B]

The worst thing she can do is NOT stay on her pain meds. They offer great comfort when used right. She will never be out of pain if the cancer has take over and it sounds to be the case. Cancer alone can be very painful. She needs those pain meds on a regular basis.

Eating slows also when the cancer reaches a point of no return. The body is shutting down and the last thing a patient wants to do is eat. They just don't have the strength or the hunger needs anymore.

It's very hard watching our loved ones slowly leave our sight, but it's even harder to watch them go through so much pain if they don't have too. Please try and get her to take her meds. They can only offer comfort.

Best of luck.

[daddyslittlegirl]

Connie,

WOW, what a story! God Bless you and your mom. My dad was recently diagnosed. He too has been through alot prior to his. He typically is stuborn about doing anything, but fortunately he is willing this time. My family and I have been discussing the fact that (as hard as it is) it has to be his decission. Perhaps they know what's best for them. Hang in there. My prayers are with you and your mom.

[ConnieH]

Daddyslittlegirl

It is the hardest thing you will ever do in letting them make their own decisions. You want to protect them and keep them as long as possible. Sometimes I feel like I am on a never ending roller coaster ride b/c as my daughter says we take one step forward in helping her with her pain management and three steps backward. She starts doing well with a particular medicine and then she always finds something wrong.

Mom just told me that she has been afraid of giving up anything that she does for herself b/c it feels like she is giving up her independence, but she realizes that she is just unable to do things anymore and has agreed to let me help her.

Mom is realizing that she has gotten worse with her fatigue and breathing just in the last two weeks. It is worrying and depressing her, then she gets mad b/c she is never been one to look at the negative.

Just be there for your dad and he will tell you what he needs. It may not be what you want to hear and it will be frustrating at times but just love him.

My prayers are with your family.