Radiotherapy for a 96yo

FMPHWC

Hi All,

Background

My mother will be 97 in July. She is alert; has moderate deafness and doesn't always hear/remember all detail; can think and decide; 35kg/77Lb is her normal weight (fully clothed and dripping wet); lives in another state from myself so conversations are by hearing aided telephone (note comment re deafness). She has very bad psoriasis, some back/sciatic pain, a leaky heart valve, sluggish kidneys. She has "tissue paper" skin that tears and peels at the slightest abrasion (one foot touching the other) and they heal slowly. She has a bad reaction to "silver" dressings. She also has some shoulder pain that she attributes to the breast cancers. She is 96. She has multiple specialists and each visit to the doctors takes her a couple of days to recover from. She has "home nursing" support for bathing, shopping, cleaning but generally is pretty independant. She lives on her own in a granny flat attached her son's home. She is an Australian with a Veteran's Affairs Gold Card (so medical expenses are one of the few things she does not have to worry about). She can SMS in perfectly constructed, spelled, punctuated and capitalised English, so she is pretty "with-it" for her age.

Her Cancer Journey

She had an "inconclusive" needle biopsy about 10 years ago. As she did not plan to have any chemo or radio, she elected not to test again for a confirmed diagnosis.

She had another health issue about 5 years ago (very high calcium levels in her blood tests). They looked for cancer then and could not find it so diagnosed Sarcoidosis and was being managed by a haematologist/oncologist.

About a year ago she noticed her nipple deforming. Diagnosis was Lobular Carcinoma in Situ. One big lump in the breast and a line of little lumps going up to her armpit. They told her it was slow growing and contained.

Again she said no chemo and no radio. They told her they would give her a tablet to stop it from growing. The table turned out to be an estrogen inhibitor - with side effects the same as Chemo; and meds to control the side effects the same as chemo. She is not impressed with the semantics, nor the side effects. She struggled with the for about 6 months and then stopped taking them.

This week's oncology visit they said the lumps were growing and that they wanted to give her radiotherapy every day for 3 weeks (that schedule, by itself, would be exhausting).

They told her the only two treatment options available to her were 1- have the radio regime as mentioned or 2 go back on the Estrogen Inhibitors. They said there was no "do nothing" option as the tumours might ulcerate. I heard "might" but she does not describe any symptoms of ulceration at the moment. I will ask her a bit more tonight. On Thursday she was in a bit of shock but still not wanting either option. On Friday they told her the "do nothing" option was not available because of the threat of ulceration. I am trying to let her talk it out and do research for her.

As I research, I find more things to talk to her about, so this thread is a learning curve and I apologise for any ignorance, misspelling etc. Most of you will know more about what I am trying to describe than I will ever learn so apology and empathy.

Mum nursed her husband who died aged 80 having had many terrible years with prostate cancer, its meds, its treatments. They wanted to irradiate his spinal secondaries and he agreed. He died after 2 days into a two week treatment plan.

Our Question

I cannot find any research on such interventions on anyone anywhere near as old as Mum. If she agrees, it think/fear it is possible that the radiation will also cause wounds that will be difficult to manage (as are ulcerated tumours from what I have gathered).

She meets a new radiotherapy oncologist this week, potentially Wednesday morning. She has agreed to listen to what they have to say but is not convinced that she should agree to radiotherapy although the threat of ulcerated tumours is causing her to doubt.

Our key question at the moment is her decision re radiotherapy as prescribed and described above on a 96yo, (suspected to have mets and other health issues). My research re ulcerated tumours indicates they are very rare.

We are wondering if they are risking treating / burning her to prevent something she might never get. As she will be 97 in July, her quality of life is her major driver. She has pole-vaulted over the longevity hurdle (as did her mother and her grandmother).

Thanks to all for any shared relevant experience that I can convey to her.

wrenn

I'm so sorry you are left with this dilemma. I would get a second opinion. Personally I would wait to see if it ulcerates since it might not and it would be a shame for the rest of her life to be lived with side effects of treatment.

Such a sad position for all of you to be in. I hope you find some answers.

Bonnie7

Hi there,

Your Mum sounds amazing! I will keep this brief, if it were my Mum it wld be a most definite no. Pain management and quality/dignity of life at the appropriate time.

Good luck; wishing you and yr Mum the very best! Xxx

Georgia1

Good mornIng. In the US radiation is often not recommended for women over the age of 70. And while Tamoxifen or an AI can help with spread, and I'd encourage your mom to do that, at 96 her quality of life and respect for her decisions seems most important. So if she chooses no treatment that seems perfectly sound at this point. Best wishes to you both.

melmcbee

Prayers for you and your mom. I would not do radiation. I would take the pills and make sure she has what ever meds she needs for pain and anxiety. Basically what ever she wants. Good luck and healing hugs.

downdog

I can't believe they are even proposing radiation for a 96 year old. Her tissue paper thin skin will not tolerate it and the healing abilities of someone her age are severely compromised and very slow. I haven't had radiotherapy, but everyone talks about fatigue as a side effect and I can't imagine how this would compound her already low energy level (which is normal for someone her age). Quality of life is key and if she chooses to do nothing, that is her choice and should be respected, with a plan to keep her as comfortable as possible and manange pain, if this progresses. There are other hormone therapy drugs and many women who have experienced severe side effects on one switch to another and find it more tolerable. Perhaps she would be willing to try another pill to see if she can can tolerate it? There absolutely is a third option of declining all treatment. Best wishes to both of you.

Beesie

Was your mother diagnosed with a needle biopsy or has she had surgery? And do you have a copy of the pathology reports? If not, you should get them... do you have medical Power of Attorney for your mother, which allows you to talk to her doctors and see her reports?

Something isn't making sense. Lobular Carcimona in Situ (LCIS), despite the name, is not cancer; it is a high risk condition. It is not treated with either chemo or radiation. Often endocrine therapy (estrogen hormone blocker) will be prescribed to reduce the risk of the development of breast cancer.

If the docs are suggesting radiation, then your mother's diagnosis likely isn't LCIS (or no longer is only LCIS). So first step, you need to understand her diagnosis.

Has she had surgery? If not, and if she does in fact have an aggressive invasive cancer that could potentially ulcerate, might surgery be a preferred option over radiation or do you feel that her body wouldn't be able to handle surgery and anaesthesia? My mother is 93 and in reasonably good health physically so if it were her and if the risk was high that the tumor might ulcerate, I think she might be able to handle surgery better than radiation.

Additionally,as the others have suggested, there are different types of hormone therapy available and regardless of any other decisions, it would make sense to see if she is better able to tolerate a different type.

Georgia, FYI, I believe that in the U.S. radiation is often done on people over age 70 however for women with breast cancer, rads is considered to be optional (rather than pretty much mandatory) after a lumpectomy if the patient is over 70. My mother was diagnosed with early stage BC when she was 80 and rads was presented as an option but none of her doctors were overly concerned when she declined.

Georgia1

Here is an article on radiation for women over age 70, in case it's helpful:

https://www.medscape.com/viewarticle/858793

Beesie

To provide clarity for anyone reading who might not want to go to the link Georgia provided in her post above, here are the exclusion factors for rads, from that article:

The CALGB 9343 researchers advised that it is safe to omit RT in cases involving the following characteristics:

• patient aged 70 years or older
• stage I breast cancer ≤2 cm in size, localized to the breast, with no spread to the lymph nodes
• estrogen-receptor-positive tumor
• surgical removal of the tumor with lumpectomy with negative surgical margins
• subsequent long-term hormonal therapy (tamoxifen)

.

This research recommendation has been translated into treatment guidelines as follows (from the NCCN Treatment Guidelines): "Breast Irradiation may be omitted in patients ≥70 y of age with estrogen-receptor positive, clinically node-negative, T1 tumors who receive adjuvant endocrine therapy" https://www.nccn.org/professionals/physician_gls/d... (Registration is required to access the Physician's version of the Guidelines)

What this means is that radiation after a lumpectomy continues to be recommended for patients who are 70 years or older who have either:

• tumors that are larger than 2cm or
• nodal involvement or
• an ER- cancer or
• positive surgical margins or
• will not be taking hormone therapy

.

So while it's accurate to say that radiation is not required for a select group of women age 70 and older who are diagnosed with breast cancer and who have a lumpectomy, it is not correct to say that in the U.S. radiation is not recommended for anyone over the age of 70. From the FMPHWC's description of her mother's condition (which, granted, is confusing given the reference to LCIS), it sounds as though her mother might not meet the exclusion criteria.

All that said, personally I think subjecting a 96 year-old to rads is something that should be avoided at almost any cost.

FMPHWC

Thank you to all - for your thoughts and your caring.

I have read and reread, and re-read each comment and will respond more fully asap. I have had to work today and tomorrow and I am using this time to gather my thinking and approach.

A nurse friend who knows Mum (and her skin), believes RT should be only applied as a last resort for pain management. She thinks Mum's skin will degrade by 3 treatments, possibly with one.

Alternative Estrogen Inhibitors to try seems like a position Mum can think about.

Power of Attorney and all medical information is held by my brother (with whom Mum lives) who goes to all doctors appointments with Mum. The rest of us (4 in total) live in different towns, or in my case two states away (2 days drive or 5 hours by plane - in an emergency). He is a qualified quasi medical professional, as is his wife and their daughter is a nurse.

Mum is canvassing each of us separately and so far there is agreement to back her decision whatever it is.

I am working with what her understanding of the situation might be as a priority. It is likely that my brother with Power of Attorney, has not told her all (hence the discrepancies many of you noticed - my guess). As one sibling has breached confidentiality in the past, he seems to be keeping his power dry.

I will re-read all comments and convey your thoughts and best wishes to Mum as soon as I have worked out a way to frame that message. She would want me to express her appreciation.

Thanks again to all for your contribution and kind thoughts. Mum is a prayerful person, so she will also appreciate prayers from those of you who wish to off that. Her name is Mary. She usually has a long prayer list for others.

BrooksideVT

Can you ask your mother or brother to add you as a person who has access to her medical info?  And would it be possible to set up a conference call while your mother, your brother, and the radiation oncologist are chatting?  Does her oncologist support possible radiation?

As you are aware, it is very unusual for radiation to be recommended for someone your mother's age and condition, so it would be my guess that this is truly a situation where something needs to be done.  Probably a medical (rather than a radiological) solution would work out best, but the RO has options in addition to the "normal" three-or-so week schedule and perhaps what he has in mind is not what most of us might assume.

FMPHWC

Thanks again,

The Oncoologist has referred Mum to a Radiation Oncologist with the recommendation of radiation treatments EVERY day for 3 weeks (I assume that does not include weekends).

Conference call situation is not possible. I am only one of several siblings in 4 different locations.

Mum is due to meet with her - RO - for the first time on Wednesday to find out what she has in mind. All Mum's doctors are female at the moment. She is an "extremely" modest person and this exposure is confronting to her.

Hopefully they will find something she tolerates better than Arimidex.

Thanks again.

Georgia1

Thank you for catching us up. Yes, I had three weeks of radiation and it is daily Monday through Friday with no weekends. We'll pray for her.

Outfield

Making the assumption that your mother has invasive cancer (a diagnosis more serious than LCIS) because the scenario and recommendations just don't make sense for LCIS only, here are some thoughts:

The side effects of "estrogen inhibitors" really aren't anything at all like the side effects of "chemo" for breast cancer. They can occasionally be quite severe, but the potential for things to go very bad in a short period of time is really not comparable. I don't know which meds are approved for use in Australia, but we've got some choice here and one good thing is that they are not all just different brands of essentially the same thing. Some people tolerate one much better than another. For example, exemestane is quit different from anastrozole (Arimidex) structurally and in its exact mechanism, so side effects for any given individual can be very different.

I don't know if this is true in Australia or not, but here in the US there is a tendency to minimize the very serious potential side effects of radiation. It seems to be something cultural in the field. I am working with a man right now who had radiation for prostate cancer roughly 10 years ago and who has recently developed a connection between his rectum and his urinary tract - a truly horrific mess - and I definitely believe him that he had no idea this type of complication were possible. It's a heck of a lot of damage to nearby normal tissues, skin just being the one that's easiest to see.

The same thought that Beesie brought up springs to mind - even mastectomy is not a particularly invasive or risky surgery. It's not considered a surgery that is likely to expose a patient to major blood loss or severe cardiopulmonary stress. Of course there's no given that surgery is a possibility - it would depend on the anatomy of the tumor - but it's worth consideration. If they do not think her skin would heal from a surgical incision, that seems in itself strong argument not to mess with her skin.

Finally, although I could imagine doctors here telling you there is "no 'do nothing' option," of course there is. I read a little bit about Australian law, which (being truly a little bit) does not make me any sort of expert, but it sure looks like there are strong similarities to US law. Basically, as long as your mom is able to understand risks and potential benefits and weigh these in making a decision, she can refuse treatment. At 97, with what sound like some moderate severity medical problems, her life expectancy is limited. "Ulceration" is not necessarily the worst thing in the world that could happen. There is a wound that is not going to heal, but depending on the size and location, and whether or not it is painful (they are not always), the degree of associated suffering is quite variable.

Does she have a primary care provider? She might benefit from finding a Geriatrician. It's very common here for specialists to lose sight of the forest while staring at their own particular tree, and good primary care providers can help sort that out. Honestly, at 97, preserving functional status is usually goal #1, and sometimes beating off the specialists is necessary to avoid the functional hits that come from more and more treatments.

FMPHWC

Thank you all very much. I will update as things progress.

As of last night, the first appointment for yesterday with the Radiation Oncologist had been cancelled at the clinic end and Mum did not have a new time.

Her mother had to have a colostomy as a result of radiation for ovarian cancer so Mum knows the risks.

At 96, she just wants to die as peacefully as possible with minimum intervention. She is extremely stoic and will suffer whatever she has to suffer but she cannot see the point of medical intervention that makes things worse than they are - to prolong things.

She has seen that too many times - nursed her mother, her husband, her mother in law, (she is way older than any of them were when they died). She worked in a hospital. I think she knows what is coming and having to assert herself is just a waste of her energy.

Hopefully we will know more after this consultation happens - if it happens - with the radiation oncologist. I think she will be seeking a new oncologist or going back to her gerontologist who got her through major bowel surgery when she was about 92.

Thanks again,

Fran

wrenn

I don't understand why she has an appointment with a radiologist if she doesn't want medical intervention. I hope she understands that she doesn't have to have any appointments for anything. I wish her peace and comfort.

FMPHWC

Thanks again,

She agreed to the meeting to hear out the radio-oncologist because the normal oncologist insisted she had not options beyond 1- radio therapy or 2 returning to Estrogen Inhibitors. "for the sake of peace" she agreed to hear the person out as she respects that they are trying to help her even if she does not agree with the solutions they wish her to submit to. So far, that meeting has been postponed and not yet re-appointed.

Thanks again,

Denise-G

FMPHWC - so sorry your mom is in this position at age 96. My mom was 80 at diagnosis and in good health.

She had lumpectomy only and no other treatment. She was only able to take Arimidex for 1 year because she

had balance issues. My mom is now 84.

I've been through Rads - no way would I recommend that my 84 year old mom have them.

I am just so sorry your mom is going through this. She sounds like quite the woman!

FMPHWC

Hi All,

Mum's appointment to meet the RadioOncologist is Friday next week.

Her general practitioner has told her that therapy is critical as the lumps may break through (fungate)- weep, smell, ooze, bleed, not heal. Mum tells me the lumps going towards her armpit are changing colour and that at least one feels as if it is lumpy or spikey. I am assuming that is what is worrying them so much to want to irradiate. She says the bigger lump in the bottom of her breast is smooth and hard. I don't like to quiz her too much but I will see if I can get an indication of size. They do not give her much pain but she has a bit of shoulder stiffness putting on clothes and sleeping.

She seems in good enough spirits and talking things through very lucidly (always) and calmly (mostly - there have been a couple of surprises which took 24 hours to digest and get into perspective).

I am doing a bit of research to see if the "seed" type brachytherapy might be viable as it seems less likely to cause the lumps to break through given the fragility of her skin. I know of two men who have tolerated the seed type treatment for their prostate and "never felt better" (some of which is undoubtedly relief .. but..they are very positive about this form of treatment compared with others). I have not yet found any research on "seed" radiotherapy on fungating tumours but I will keep looking.

Thanks again to everyone for your interest and contributions. It is very helpful for me to have had such conscientious input into my concerns.

Cheers

f

FMPHWC

Update. Mary meet with the Radiation Oncologist on Friday.

They convinced her that there was a danger of some of the tumours breaking through but agreed with her that daily treatment for 3 weeks was more than her energy levels etc could handle. They changed the schedule to twice a week for 6 weeks. It seems that someone is taking her age and general condition into account. She starts on Friday 2nd March.

She remains in good spirits and attitude.

All the best to all and thanks again for your interest, contributions, support and encouragement.

Outfield

Wow, that's really a creative plan. I'm impressed they were able to consider both your mom's overall function as well as the local problem. I hope your mom does well.

sbelizabeth

FMPHWC, I don't know the laws where you live, but where I live, if someone doesn't want paramedics doing chest compressions if their heart stops, it's important to have paperwork with the doctor's signature. Here it's called either a DNR (do not resuscitate) or a POLST (physicians orders for life sustaining treatment).

I'm a nurse, and I do statistics and analysis for cardiac arrests. It always seems so sad when a very elderly individual is found unresponsive, paramedics are called, and CPR is performed. Sometimes the family insists it isn't what the patient wanted, but without the required documents, CPR must continue until paramedics contact the hospital for an OK.

If you haven't done so already, ask your mom what she would want if her heart were to suddenly stop. If she wants no resuscitation attempts, she should make sure everyone who provides care is aware of it.

FMPHWC

Thank you sbelizabeth. I am pretty sure Mum has had a "do not resuscitate" in place for quite some time, but I will double check. She is much better going quickly with a heart attack at this age than a slow painful decline and she sees the sense in that. That said.. I quote from a couple of days ago..."I will be 97 in July you know" - note WILL!! I did smile.

She had a fainting attack a couple of years ago and (knowing I would break her ribs if I had to do compressions), asked if she would want to be resuscitated if we found her with no pulse and not breathing... her response was something like... I would like someone to try in case it is something that is not serious!! (seriously!!)

sbelizabeth

OK, that laugh was SO great.

I hope your mom celebrates her July birthday in cheerful good health. And when it's time, I hope she flies away gently and easily.

FMPHWC

First treatment last night. She is proud that she overcame her claustrophobia but was still on self induced adrenaline when I spoke with her. I will check her again today - I am not expecting her to be quite so gung-ho this afternoon!

She told me last night that she did not have to say her "going to bed" prayers as she had said a few weeks worth while fighting her claustro with the "thing" wizzing around her.

Thank you all for your interest and caring.

f

Salamandra

Your mom sounds like a remarkable woman! If you are able to update, that would be wonderful.