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Not Having Treatment (80 years old)

Nan-Peg11
Posts: 15
Joined: Aug 2011

My Mom's only symptom is small amounts of blood in her bowel movements. Not even every time. No pain, etc. (This had been going on for 2 years before diagnosis.)

Given her age and other health issues and the fact that the treatment options are both very difficult for someone her age, wondering about opinions on not having either one done and letting things ride.

Haven't discussed it in detail with the doctor yet so all he's said so far is it's usually a slow growing cancer and additional/worsening symptoms might also be slow. But, eventually there would be spreading, pain, etc.

We are meeting with the Radiation Oncologist this week and after all the reading I've done, I have tons of questions about how appropriate this is for my Mom.

The doctor and I have both said from the beginning that she has three choices (surgery, chemo/rad or doing nothing). I want to share with her the difficulties of radiation so that she can make an informed decision (not an emotional one) before undergoing the radiation because she thinks that's what she has to do.

None of the choices are "good". So hard to say "do nothing" when you know that will ultimately mean death. At the same time, should she go through agony for a few months (or longer as many on here have said)? Something else could take her life during this time as well.

Any thoughts? Experiences with others who have refused treatment?

Angela_K
Posts: 370
Joined: Jan 2011

I am soooo sorry that you and your m0m are facing this. It is such a personal decision. I can't say if I would go through treatment again at 80 or not. For me, it would be dependent on my current health (physical and mental strength) and family situation I suppose. I am assuming that she doesn't feel strongly about any of choices?

I know nothing about the course this specific cancer takes untreated but I'm sure others here will share what they know.

Many, many prayers to you and your mom in the days ahead as you further explore your options and prayers of peace and comfort to you both once the decision has been made.

With love and hope,
Angela

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Nan-Peg11,

I really think this decision depends very much on your mom's physical and mental health at this point in her life. My mom is the same age and very active, clear minded and has a new grandbaby less that a year old that she sees almost every day. She has always had a fighter's nature. I would be very sad and surprised if she was diagnosed and chose no treatment.

However, I also know that there are very many women that age that have struggled with multiple health issues and are less strong, physically and mentally. The side effects might be very hard for them.

Family support is another factor. It sounds like you are very devoted to your mom and willing to help her as much as she will need. She will need physical and emotional support.

It is such a difficult decision. I really feel for you and your mom. I felt compelled to respond. I am a christian and have prayed so much for myself and sought the prayers of others. The last advise I can give you is to pray, pray, pray - for guidance, comfort and grace to move forward. I think that is the only thing that will give you peace with whatever decision you make and outcome.

May God bless you both!

Mary

sandysp's picture
sandysp
Posts: 734
Joined: May 2011

I thought she was already in treatment. It's a huge commitment. You have to go every day. But 80 isn't that old any more. How much does she want treatment or life?

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

If your mother doesn't have treatment..she will die. 80 isn't old any more..Most important..anal cancer has such a good prognosis.Why wouldn't you do this? I am mystified..alyse

Nan-Peg11
Posts: 15
Joined: Aug 2011

My Mom hasn't started treatment yet. I'm guessing 3 more weeks. After she sees the Radiation Oncologist, he will meet with the Gastro Oncologist to come up with a treatment plan. Then we go back in to meet with him, discuss the plan, etc.

The reasons for considering the "do nothing" option are that although 80 isn't so old anymore, age is relative. She's not an optimist so her 80 is "older". Also, she's recently been hit with 2 other things - she had a pacemaker put in a few weeks ago and has a condition called ocular myasthenia. It's a muscle weakness by her eyes so she has double vision. She's not coping well with all of this on her plate. And, last, even if the treatment is successful at curing this, she may be left with lingering effects because her body will not bounce back like someone younger would.

The doctor said it and it's so true - there are NO good options.

So, like I've researched the surgery/colostomy route and the treatment route, now I'm trying to find some information on what she can expect if she chooses the do nothing route.

Angela_K
Posts: 370
Joined: Jan 2011

I totally understand. And everyone has different feelings toward death with the American culture leading the pack in avoiding it all costs. There comes a time when quality of life trumps quantity. Again, this decision is a very difficult and personal one and I would never question your choice, only support you once it's made.

Blessings,

Angela

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

Well stated, Angela. I couldn't agree with you more.

Dog Girl
Posts: 100
Joined: Sep 2010

While my Mom is not suffering from anal cancer, (that was my lucky draw!) she is 88 and in very poor health. She has COPD, Diabetes, High Blood pressure, glaucoma, nueropathy, etc..., and is in Stage 4 renal failure. She chose to not go on dialysis about 2 years ago and my siblings and I all said we would support her decision whatever it was. (She has however outlived her kidney doctor's estimate of how long she had by over 8 months at this time.) Her quality of life is not great, so while it is going to be absolutely horrible when she dies, it will be her time. I think as people get older they come to accept death as the natural course of things. Your mother has probably had friends, realatives, and loved ones pass away already, and she may not fear it like younger folks may.

I think the best you can do is arm yourselves with information. It might also be good to ask what her doctor would recommend concerning treatment if this was his/her mother and in her current health condition. I do think attitude will be crucial in the recovery period; treatment is intense and can be brutal, but it is relatively short and if she can stand it for a few months, she may have many more months to live. If she chooses to not pursue treatment I suggest you reach out to your local cancer support group for counseling for both you and your mother. Hospice is wonderful as well. We are having home Hospice come in to my parents house a couple times per week now and that is a very good thing. I will keep both of you in my prayers.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

so sorry that you have to make this decision. I hope that i do not bring negativity but i want to be honest about my experience. I was 56 when diagnosed. I had no one to talk to because this site had just come on for anal c. during my tx in 2009 or i just was too weak to search it. i was strong and thin and not scared of dying at all due to belief in heaven. But chose to try this not knowing about the side effects. it almost killed me literally. had to go to ICU at MDA after tx and then reg hospital for 10 days. my bottom hurt and all my private parts were swollen about 5 times their size. my burns were so bad that anal skin was almost black and peeling off. I hurt severely for 12 months then less after that. now at 25 months i am better but still have pain and bleeding .Now, please know that others have NOT had this severe of a reaction. It has taken me a long time to decide to write this to you because who knows what it would do to your mom. she might do better. hugs to you sephie

Nan-Peg11
Posts: 15
Joined: Aug 2011

Sephie - thank you for your honesty. I am so sorry you had such a rough time.

We saw the Radiation Oncologist this week. Although she is now well aware of the potential side effects, she's decided to try it. I have all the misgivings I already had about the physical difficulties and about the idea that, unlike many of you on this site, she doesn't have an optimistic personality which seems crucial to getting through this. Unfortunately, they say the surgery might end her life and doing nothing could lead to long-term pain and eventual bowel obstruction so there are no good choices.

We've asked both Oncologists whether they'd recommend this for their own mothers and they've said yes - but only because the alternatives are.........

I now know why I'm not able to find anything online about someone this age going through this. As rare as anal cancer is, the doc said it's almost unheard of in someone this age. So, answers to questions about her potential benefit if she goes only partially through it, etc., don't exist.

We go back to the Gastro Oncologist this week. He will plan the Chemo part (definitely reduced dosage which means remission is probably the best outcome vs. cure). She should begin tx within 2 weeks.

Sorry to be such a Debbie Downer. Not my nature but I must admit I'm having a tough time imagining a good outcome.

Again, thank you all for your support.

cap630
Posts: 148
Joined: Jul 2011

Your mother will be in my prayers and thoughts as she goes through treatment. Hope all goes well. Please keep us informed. ~Carol

Angela_K
Posts: 370
Joined: Jan 2011

Now that the decision has been made, you both can now get your minds around what to expect a little bit more. I was beginning treatment at Scott& White about the same time one woman, age 82, was ending hers. She did beautifully! She was hospitalized for three days mid treatment when her blood counts were low but by the end of treatment she had her energy back and felt good. So, your mom may surprise you.

Please keep us posted and EXPECT THE BEST. The thing about this bunch, we all may have different opinions regarding what to do and what not to do, but I believe we all share empathy, compassion and offer a wealth of loving support.

Bright blessings to you, your mom and your family as you press forward.

Angela

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I know what a difficult time this is, as it seems there are no good options. My prayers go out to you and your mom and I hope you'll keep us posted on how things are going for her. Don't forget to take care of yourself during this time too--it's hard being a caregiver. God bless you both.

z's picture
z
Posts: 1250
Joined: May 2009

I am glad your mom has decided for herself to give this a try. They will more than likely moniter her very closely, because of her age. Remember, she could always stop anytime. The medicines for the side effects work really well. Please keep us posted, this is a short tx time and I hope your mom speeds trough it. I wish you both well. Lori

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

if your mom is saying try this, then her attitude is good. good attitude is the best way to heal. with you helping her, she will conquer this and heal . please take care of yourself. laugh a lot. hugs to you and your mom sephie

Nan-Peg11
Posts: 15
Joined: Aug 2011

Wow -

Things were dragging along. All of a sudden it's begun - CAT scan, mold and tattoo yesterday, bloodwork today (for biopsy of one node), biopsy and appointment with oncologist to discuss the chemo and whole picture. First treatment Monday.

Alot for her to take in but I think getting it underway will be better than sitting, waiting and worrying.

Keep you posted.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I wish your mom all the very best. I think it's good that things are moving right along towards the beginning of treatment.

z's picture
z
Posts: 1250
Joined: May 2009

Yes everything moves very fast and before you know it your underway. I wish you and your mom well. Lori

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

great!!! get it started and over with. blessings to you both. sephie

TuffCookieHere2
Posts: 32
Joined: Apr 2010

Hello Nan-Peg,

If it is ok, first I would like to ask, what are her other health conditions? If that is ok. Secondly, based on that response, depending what they are, I want to say my mom is 78, just 2 yrs younger then your mom. I know everyone is different, no 2 people can deal or put up with what another can, but my mom had very bad diverticulitis, I mean she kept getting bouts of it every like 4 mths, and back in the hosp she went, before she could give time for the healing, she would get another bout of infections, vomitting, sweating, you know it, the surgeon said they were going to keep her this last time back in OCTOBER and she had MAJOR SURGERY, but she is over not to bad weight, 145, no high bp, no diabetes, shes a skin melanoma survivor of many years. My point is, 80, is old...but sometimes, some people that age, you be surprised can withstand alot...it comes with their experience through life, and being stronger. I think if someone really had to, they would put up with doing something, if it means, saving their life. Yes, anal cancer is slow growing true, but that doesnt mean, she wont be in pain and suffering, near the time, its going to travel....through her body, because that is what will happen, toward the end, she will be i believe....worse, in pain, and near death, and might even have regrets of not having tried to save....herself when she had the chance. Survival rates for anal cancer are pretty high...I mean if my mom had anal cancer God forbid at that age, I would definitely....DO SOMETHING. I am a 6 year anal cancer survivor, of course, I got it at age 44.....im also a 9 yr breast cancer survivor, got that at age 40, neither one related. Nan? I am not sure about the surgery, as, some surgeons told me, it could spread that way.....the line of treatment, for anal cancer....is usually called, a "sandwhich effect" where the patient has....so many weeks of radiation, some of chemo and rads together, the rest of the weeks just rads....I wont lie and say it was pleasant, at some points, i thought i wanted to stop...but you cant, you need to keep going....the skin will peel and burn and itch....sitting might be difficult a bit...but there will be a constant itching and burning....I think our moms as well as any family member, at any age, would be important to us and to keep around as long as we can....think if she was older, she might get other illnesses, that she might suffer even more...then anal cancer treatments...i dont believe because someone is a certain age...that we should just do NOTHING? I think that would be very bad....i think no matter what age...expecially if she is your mother, you should apt to do something...my choice would be....the chemo/radiation, with no surgery....ask the doctor, he knows, about the sandwhich effect....i forget the 2 drugs, but it has to be done precisely correct for it to work right...rads, then rads/chemo, then rads the last weeks, booster will be part of it....if you want, they can even put your mom as inpatient, the weeks, she does the rads/chemo together....and outpatient when they do just the rads...they can give her cremes and pain meds for the itching and burning, there can be ways around that, important thing is to BLAST THAT TUMOR AWAY!!!!!!!!!! The chemo/rads are and should be done together, they should be given her a IV drip of the chemo, about 24 hour infusion i think it was, and same days, be wheeled down to radiation....ASK YOUR DOCTOR....i think, some pain and itching and discomfort...peeling of skin....for 8 weeks...at age 80, is not to to bad, to keep your mom around possibly another 5 more years? 10 more years? I would want my mom around a long time. I think it is sad to say, because shes 80, let's not do anything, not the right way to really do things...most older people live til 95, 100, suffer some things but, we don't say, well, lets not give them, a pain med, or, do anything for them, because they are old and will die anyway? no wrong way to think, we are put on this earth for a reason, as long as we are breathing, and a way to save someones life, i say GO FOR IT....it wont be easy trust me, but i think, giving her love, encouragement....and faith and hope....will pull her through. This will be 2 mths approx of treatments....if you choose the rads/chemo....she will still be 80 and, if she makes it through, probably live, a long happy life, you cant just not do anything because really? doctors say its slow growing, but how slow is slow? They are not God, only God knows, what that really means, also, as I said before, if she comes toward the end, and the cancer starts, spreading? what will you do then? she will be suffering then also, filling her with pain meds, but knowing this is going to be DEATH...and then you will think maybe i should have had her do, the anal cancer treatments...why let her get to the point of letting the cancer eat her up...and suffer...i rather have my mother suffer, knowing im saving her life. Just my opinion....is all...your mom is not that that old, there are people i know that go in surgery, even passed her age..some I know, cant do it, but, she is 80, not 85, or 90, or 95...I think she still has hope....remember, if she suffers some, you rather have her suffer, knowing your saving her life, and not, her suffer, and dying, knowing you never tried to save her. I wish you and your mom the best....I will pray for a very good outcome and May God give her the strength to make it through, and the love and encouragement from you and the rest of the family, to, give her the hope, to, make it. SHE CAN DO IT, she must be strong and fight...Im sure shes been through alot in her life...a few more weeks of suffering to save her life, im sure is worth it...no matter what age we are, we never want that to be an excuse for, not wanting to save our lives, or that of others, i say, as long as their is life, there is HOPE. God bless you all....Let us know what you decided but remember, nobody knows how fast or slow the cancer will grow, and if shes going to suffer, going out of this world, ya might as well, have her suffer, trying to save her life instead. Love and hugs, Nina~

Nan-Peg11
Posts: 15
Joined: Aug 2011

Love the name! It's something we often called my mom. She just hasn't been very tough the last few years. Until 3 years ago she was sailing through. Had NEVER been in the hospital or undergone surgery. Her only major issue was high blood pressure. At that time she had a TIA - mini stroke which has led to cardiac monitoring and being vigilant about any symptoms of another.

Now, in the last two months, she's been diagnosed with ocular myasthenia - severe weakening of the eye muscles which has resulted in constant double vision and one of her eyelids has dropped significantly. As with any autoimmune disease it's not possible to know if this is an episode that will pass or be permanent or how frequently she may experience this. The other unfortunate part of this is it now prevents her from driving and she has to be very careful walking because she doesn't see well. This alone would be tolerable. While in the hospital for this, she wound up having a pacemaker installed to irregular heart rates which caused dizziness, light headedness and, again, prevent driving. As a really independent 80 year-old with a pessimistic personality - she's really struggling with this.

The cancer diagnosis is just another big thing all within 2 months.

She begins treatment Monday. She will be in-patient for a week while undergoing first round of treatment and begins radiation. Due to her age and health issues, she will be given a lower dose of the chemo. Docs are compromising somewhat on a complete "kill" of the cancer to hopefully reduce the worst of the side effects because they know her body won't tolerate full-blown dosage.

Our hope is that she'll go from the hospital to a subaccute facility for a couple of weeks where she'll have 24 hour care. The concern at home is getting 24 hour care in place with the whole family working. These couple of weeks will buy us some time to maybe get something in place.

So - she's going for it. We are preparing for the worst but hoping for the best!

Thanks so much for your helpful and insightful post. Will keep you all apprised as she goes along.

Nan-Peg :-)

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

Nan-Peg--I wish your mom all the very best as she begins her treatment on Monday. I will certainly keep her and you in my prayers.

Nan-Peg11
Posts: 15
Joined: Aug 2011

Hi All -

Quick update on my Mom. She's been in the hospital since Monday. Began Chemo very late at night so it will go through late Friday night. Today is her 4th radiation treatment. As of yesterday, she was beginning to be a little sore in the area. They were holding off on cream/ointment until the radiation oncologist sees her today.

Soooooo it's begun. Although the treatment is rough, I think the anticipation and unknowns were wearing her down too.

Keep you posted!

P.S. Almost forgot the most important thing. The biopsy of her suspicious node in her groin was NEGATIVE. So no spread. :-)

z's picture
z
Posts: 1250
Joined: May 2009

It sounds like your mom is getting excellent care. Great news of no spread and the node was negative. Before your mom knows it the chemo portion will be over. I wish you and your mom well. Lori

z's picture
z
Posts: 1250
Joined: May 2009

It sounds like your mom is getting excellent care. Great news of no spread and the node was negative. Before your mom knows it the chemo portion will be over. I wish you and your mom well. Lori

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I'm so glad to hear about the negative biopsy--that is one less thing to be concerned about. I wish your mom all the very best and will look for your updates. I will keep her in my prayers.

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

So glad to hear that the suspicious node was negative! What wonderful news and great relief! Be careful with the creams and ointments. If they haven't told you yet, it has to be completely off - clean with no residue - before radiation. If left on, it can make the radiation burns worse. So please be careful. Ask your doctor about the Silvadene cream. It is a prescription creams for burns, and is very soothing.

I am glad you are there to watch over your mom. Keep us posted!

Phoebesnow
Posts: 447
Joined: Apr 2011

How is your mom doing? I am hoping she will not suffer much. My 90 year old mother in law just completed two weeks of radiation for colon cancer in her lungs 3 months ago. She is doing great, just returned from a10 day trip to brazil with my husband and her other son. Thinking of u both and wishing u all the best.

Nan-Peg11
Posts: 15
Joined: Aug 2011

Hi Phoebe -

I was just at the nursing home visiting my Mom. She's there for rehab following her first round of chemo. She's handling things remarkably well. So far, only a few really bad days. Yesterday was her 14th rad treatment. She's scheduled for 25-30. On the 25th she goes into the hospital for her 2nd round of chemo.

Having her in the nursing home has made for the best possible situation. There's someone there around the clock. She can't forget to eat or take meds and she gets physical therapy to keep up her strength. She's extremely tired from the radiation and if she were home, she wouldn't push herself (and who could blame her?!) but it really is best if she keeps her strength up.

Thanks so much for asking. I'll post again soon!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I have been wondering about your mom and was very glad to see your update. It sounds like she is doing really well, considering the toll this treatment takes on the body. I'm glad she is in an environment where there is proper care for her 24/7. That really would be too much for one person to handle. I hope her 2nd. round of chemo will go as well as the first and that those last radiation treatments go quickly. Once done, she can heal! I will keep both of you in my thoughts and prayers, and please update us as you can.

z's picture
z
Posts: 1250
Joined: May 2009

I am so happy to hear that your mom is doing amazingly well, that is the best news! I hope the 2nd chemo won't be as bad, as I know the 1st chemo tx was for me also. Thats great that the nursing home has her do PT to keep up her strength and thats smart. I wish you and your mom well.

Phoebesnow
Posts: 447
Joined: Apr 2011

Happy to hear she is doing well and is getting the care she needs. Keep us updated.

Nan-Peg11
Posts: 15
Joined: Aug 2011

Hi -

Seems like my Mom may have hit the wall -- all at once. She had her 2nd round of chemo last week. The dosage was increased a bit since she tolerated the first lower dose so well.

She's having diarrhea the consistency of water and vomiting. They've stopped the radiation at 25 treatments. Had hoped for 28 but they feel it's too much. She's blistering now as well.

After a lot of resistance, we got her to go back to the rehab center when she was released from the hospital Saturday. She would have very little help if she were home. A homemaker 4-6 hours a week and a visit from a nurse 1-2 times a week. She's very week now and her blood pressure is very low (before tx she took meds for high blood pressure). Spent 8 hours at the cancer center yesterday being rehydrated.

So........although she seemed to do extremely well prior to this it seems like she's really getting hit hard now. Hope it's all worth it in the end and that the side effects don't become too detrimental to her overall health.

Keep you posted. Hope everyone's treatment and/or healing is going well!

Phoebesnow
Posts: 447
Joined: Apr 2011

It was good to hear from u. It is the right thing to have her at that facility. Honestly, I felt nothing until the fourth week, and even then not so bad. It was those last three treatments that sent me over the edge mentally and physically. Very hard to make myself go for those last three treatments. I cried the whole three days. I think it is good they spare her this. The following weeks after the treatment were the worst for me. I wanted to go to the hospital.

It is going to be difficult for her now, and of course she will have second thoughts whether she did the right thing or not. But she did the right thing and maybe it will be many months before she realizes that. Many people here say they now feel better than they have in years.
Please make sure the staff at the facility are patient and kind to her during this very difficult time.

I think this tough cookie will be fine, just bear with her.

z's picture
z
Posts: 1250
Joined: May 2009

Thank you for updating us. Yes the treatment is cumulative and hits all at once in the end. Once, shes done with treatment it will be a one day at a time healing improvement. She did the right thing and she will get better and better. I am glad she is in rehab because they will make her move around and keep her going. I wish you and your mom well. Lori

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

And I hope since you posted on 10/5 that things have improved. It's really rough for the first couple of weeks after treatment because things really don't get better, instead they get worse, due to the cumulative effects of the radiation. Please remain hopeful that soon she'll feel better. She will remain in my thoughts and prayers.

ggoolsby
Posts: 1
Joined: May 2011

I personally know a lady that had anal cancer and she was 80. She went through the radiation and chemo and is now cancer free. This was 2 - 3 years ago.

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