My mom, 83, needs a hysterectomy...help!

[Govtgirl]

Here is the situation in a nutshell, and I'm looking for some input from anyone that could offer some information or advice and what the realistic prognosis would be for this.

It is 99% sure that my Mom has uterine cancer. We will get the biopsy results next week, but she's already had a CT scan, ultrasound, etc, and mostly, you should see the looks on the doctor's faces.

When she heard a hysterectomy was the first order of business, she said NO WAY, and just figured this was it, she'd lived her life. But, in the meantime we found out for sure that she has a very large ovarian cyst, that the docs say MUST come out even if she doesn't have the uterine cancer. The prospect of this thing bursting has scared her more than the cancer, so now she's open to surgery.

She's 83, diabetic, has high blood pressure, high cholesterol, and takes about 10 pills a day. Not good health, to put it mildly. She's lived on her own, but obviously, she will now go to assisted living whether she has the operation or not. But being realistic, I don't see how she would make it through surgery. If she does, what quality of life could she expect to have? She doesn't get around well now. I know hysterectomies can be grueling for a 40 year old....but 83??

I understand the doctors can't see into the future, but they don't seem wiling to give an unvarnished opinion. Maybe they aren't allowed to, who knows.

It's weird, this would be easier if it weren't for the cyst....she'd refuse surgery, and live her life until the end came. I could really sort of understand that, why put herself through such a big operation? But that cyst thing could burst, and I know that scares her more because it's like a time bomb ticking away. I don't know what to advise her, and I don't want to have her do something because I said so. She has NEVER been good at decisions, especially big ones, and she usually deals with it by doing nothing. Doing nothing now will definately kill her; surgery and its outcome might. Advice??

 

[jennifur]

Sorry to hear about your Mom's situation. I usually am a lurker but just had to reply. What about just removing the ovary with the cyst? If she chooses to refuse the hysterectomy. An ovary can be removed with laproscpic surgery and is much less invasive than a hysterectomy done with a laporotomy( full abdominal incision). I am definitely not trying to offer medical advice here,but an ovary can be removed without having a full hysterectomy. I had a similar problem with a very large cyst. The doctors
removed the ovary cyst and all through a very small incision about 1" on the lower abdomen and a 1" incision for the camera near the navel. Granted, it is still surgery and your Mom is older with other medical concerns but it would be less invasive and require less recovery time. My situation of course is different, but I didn't even stay in the hospital overnight. Just something to think about. Good luck with everything. Jen

 

[Govtgirl]

Thanks so much for replying, I really appreciate it. They said her ovary was the size of a tennis ball, and couldn't come out lapiroscopically. Sorry I neglected to mention that; this has all kind of dropped in suddenly this week and I"m a bit rattled. I guess it'd be a smaller incision than with a full hysterectomy. But then, they also said once they did surgery they'd look around to see "what else was going on."

This past weekend in the ER was the first time my Mom went to the Ob/Gyn in 47 years.....literally since I was born. She said it embarrassed her and she refused to go. You should have seen the look on the doctor's face when I told him that. I could only say "she refused to go." So, who knows how long this thing has been growing, and whether or not it is cancerous also? They won't know that till they take it out. Sigh.

 

[Govtgirl]

Also, she is about 50 lbs overweight, has always carried it in her stomach, so she never noticed any bloating or that she was any bigger. She always had that pooch, and I just never noticed a difference either.

 

[karenvictoria]

My grandmother lived to 89. Your story is a carbon copy of my grandmother. She had a hystrectomy that she was pressured into by my aunt and was never the same after she came out of anestisia (sp) Two years later when they thought she did have uterine cancer she opted to do nothing. She was around 85 at the time she found out. She is like you mom and said she lived a full life and let it be as they found it. I know it's no help with your mom having issues with the cyst. Did they give you odds to as if they took it out and if they just left it alone. If the doctors have no idea how long it's been there couldn't it just be there forever until she does pass away. If your mom doesn't want it then as hard as it may be I would let it ride. My gandmother wanted no parts of the doctors. She was very old school. She did go into assisted living and then when the demensia ( sp) got to her at around 88/89 she fell and broke her hip. She died 4 months later from the cancer but it never overtook her life until the very bitter end. I guess what I'm saying is that from a daughter's standpoint you want her to have the surgery in some way to give her a chance but at the same time you don't want to be responsible for that kind of decison. Talk it over and listen to your mom and see if you can see what it is that she truly wants.

This is just my story. I pray for your mom no matter what decison she makes. i pray for you as well for guidance to help your mom.

 

[Sunshine1528]

Just wondering if you could get a 2nd opinion? You mentioned it was diagnosed in the ER?

I have had treatments in the ER where the treating Dr. didn't have a clue. Had torn abdominal muscles where my C-Section scar was - the guy did a vaginal on me thinking my pain was PMS related? I asked about the large lump on the left side of my abdomen - he said "Oh, I didn't notice that."

Just thinking another opinion may help with your decision, good docs the first opinion or not. We all know it is harder to heal as we age and your concerns are very well proven from past instances.

Keeping you and your mother in my thoughts . . .

 

[hiitdogs]

I always heard that cysts are rarely cancerous and that they usually dissolve after a while. This is what I found on www.gynsecondopinion.com

WHAT ARE OVARIAN CYSTS?
An ovarian cyst is simply a collection of fluid within the normally solid ovary. There are many different types of ovarian cysts, and they are an extremely common gynecologic problem. Because of the fear of ovarian cancer, cysts are a common cause of concern among women. But, it is important to know that the vast majority of ovarian cysts are not cancer. However, some benign cysts will require treatment in that they do not go away by themselves, and in quite rare cases, others may be cancerous. A cyst may cause discomfort or may be discovered at the time of a routine examination, when you are feeling absolutely fine. The good news is that almost all ovarian cysts will go away by themselves without any treatment. Since the vast majority of ovarian cysts are benign, the presence of an ovarian cyst is a usually a non-worrisome occurrence

Of course I am not a doctor nor do I know details about your Mom's diagnosis. I think that there would be pretty high risks for a surgery at your Mom's age and additional health conditions.

I probably would get a second or even third opinion.

I am so sorry you and your Mom have to go through that. Hopefully despite of appearance you will get some good news. All the best to you and your Mom.

 

[icumom]

Not knowing your mom,nor having assessed her, I'd say she can go for it...surgeons are not hip at doing surgeries they don't think will make it....and its not like a bad heart attack where she could kind of ease out of life,untreated cancer is horrible and with possible mets to the bowel, it could get ugly...I'd say go for it, and make sure that you make her a DNR if, following surgery she doesn't thrive....that would be reasonable...

Whatta year for you my friend!!! Big hugs...

 

[hiitdogs]

and its not like a bad heart attack where she could kind of ease out of life,untreated cancer is horrible and with possible mets to the bowel, it could get ugly....I'd say go for it, and make sure that you make her a DNR if, following surgery she doesn't thrive....

Is that fear mongering really necessary?

 

[booboo39]

So sorry to hear about your mom. I can certainly appreciate her not going to a gyno in so many years. My MIL was an old world Italian woman who would never think of letting a doctor examine her, hell she even referred to having relations with her husband as "doing my duty."
I suffered from cysts for roughly twenty years and I had a partial hysterectomy at the age of 35. I was young and in great health and bounced back. I was out X-mas shopping the next day, no kidding! Best darn thing I ever did. HOWEVER, of most importance is your mom's current state of health and her age. A cyst the size of a tennis ball is even hard to fathom. Mine were never bigger than a walnut, I was very lucky. I wish I had something of true substance to contribute here. I can only say that this is a difficult decision that both of you must make. Sending positive energy and prayers your way.
Booboo

 

[SirenSongWoman]

The first time I was told I had an ovarian cyst I went to work thinking I might have cancer and I was so down I talked to all my girls. Without exception they were all like "Oh I get those ALL THE TIME..." One co-worker/friend said she had one pop once and "hit the floor" from the pain. She went to the ER where she was told burst ovarian cysts were one of the most common things they see. My former doctor had me on a certain type of bc pills to dissolve the cyst. It worked. Unfortunately, I just got another one in the other ovary... It was back-and-forth for a while. My current doctor hasn't found any more, though.

I wish I had something of real substance to offer here. But I agree with the poster who suggested a second opinion from someone NOT in the ER.

 

[Netta]

Just wanted to say that my Grandmother had hip replacement surgery at the age of 90. She came out of it just fine and wished she'd had it done sooner, it was that much of a relief for her. She only lived a few more years, passing away last May, but had a lot more quality in that time and got around quite well.

So sorry to hear of your mother's situation. Some tough decisions to make for sure.

 

[trish k]

I would listen to all that the doctor says and make an informed decision, it seems that there are still some questions out there. I take care of patients who have had this kind of surgery and darned if my "little old ladies" do better than some of the younger patients. In fact I have worked on the post op floor for 9 years and every one of my patients has done well. Get all of the info you can maybe even get a second opinion, and be supportive of whatever your mom's decision is. If your mom is generally speaking a healthy individual, I am sure that she will do fine (ask the post op nurses who the best surgeon is).

 

[Aquajock]

I agree that a second opinion would be a good idea.

Govtgirl, my DH's mother died of untreated cancer back in 1999. She lived out of state, and was able to conceal from DH for over a year that things were not right. She initially had ovarian cancer, and that metastacized (sp?) into other body organs, eventually into the bone. We learned about it when a neighbor of hers called us to tell us she (the neighbor) found MIL collapsed on the floor. By then any meaningful treatment was far too late to contemplate, and her last days were very, very bad.

I guess the reason I'm writing this is that sometimes NO action is the worst action that can be taken, especially with cancer that has a nasty tendency to grow.

And, just in passing, conveying information about unpleasant realities or possibilities is NOT fear-mongering.

I'm sorry for your situation.

Annette

 

[teddy16410]

I don't know what to advise her, and I don't want to have her do something because I said so. She has NEVER been good at decisions, especially big ones, and she usually deals with it by doing nothing. Doing nothing now will definately kill her; surgery and its outcome might. Advice??

I am so sorry for your turmoil.

I think this last statement says alot.

I believe that you should give her both sides of the coin in as unbiased a way as possible.

Do your research first- understanding that everything on the web isnt true! Go to reputable sites for information

Get a second opinion

Talk again w/ current Drs to make sure you/she heard everything correctly the first time (its shocking news!)

THEN: Talk w/ your mom about both sides of the coin in as unbiased a way as possible.

It is not your responsibility to bear. Your mom- as long as she is of sound mind, needs to make this decision. If you make it or sway her & things dont turn out well you will forever feel responsible. It is your moms body, her quality of life, her choice. I believe that in these situations we must remember not to try & take away the personal responsibility of the "patient". We are each entitled to make choices- I think our role as family & friends is "simply" to help with research and options and present them.

I have been going thru similar situation w/ my mom over healthcare for the last few years. She ultimately made a poor choice - but it was her choice. I love her thru it now. Theres no talk of what if's, no talk of If I'd only...I dont ever go to the past with her. She had all the pros & cons & CHOSE to do /not do certain things. Now we take the cards we have & take it one day at a time.

 

[Reese777]

Is that fear mongering really necessary?

I don't think it's fear mongering. Cancer left untreated will definitely travel. My father never had his prostate cancer treated for a year and now its moved to his lymph nodes and he has to go to John Hopkins for tests because they think it has moved to his bones.

 

[hiitdogs]

I don't think it's fear mongering. Cancer left untreated will definitely travel. My father never had his prostate cancer treated for a year and now its moved to his lymph nodes and he has to go to John Hopkins for tests because they think it has moved to his bones.

It is fear mongering! And it is not the first time. Cancer in most cases is a slow growing disease. Those of us who have been diagnosed with it may have had it for years already, if not decades.

Cancer that is left untreated will not "definitely travel". People have had cancers contained for years without spreading to lymphnodes or any other parts of the body. It depends on the type, grade/aggressiveness of the cancer and other factors.

Other than earlier detection our conventional cancer treatment in the past 50+ years has not shown to be effective or increase cure rate. In fact if you look at cancer statistics it is pitiful! And by that I mean the absolute numbers and not the relative numbers that we are usually deceptively presented with. The way it is currently measured is 5-year survival statisics. If you are still breathing after 5 years you are considered cured, even if you die a month after that from cancer. They certainly are not measuring quality of life. Cancer treatment is the biggest hogwash I have seen in a long time. There are studies out there that show that it in fact makes things worse in most cases. But you won't hear that from the doctor unless you ask very specific questions and have done your homework.

We are talking about a 83 year old woman with many health issues. Surgery and anesthesia are never routine and always a risk. Anyone who goes through surgery has to sign that right before they wheel you in the OP. I'd say I believe what I signed on that paper. In some cases the risks of surgery may actually outweigh the benefits. That is an entirely personal decision after getting ALL the information and possibly a second or third opinion.

Someone who was just faced with a cancer diagnosis does not need anyone scaring them any more with those kinds of mental pictures without even knowing or having personally assessed the case. They are already overwhelmed by waiting for the diagnosis.

 

[icumom]

Oh Goodness, I certainly didn't want to give a tone of fear - just reality of what I've seen in 30 years in hospitals....if you feel that what you've seen shows that treatment is worse, that the cancer is slowgrowing, then by all means go with what you have found out......however, in my experience as a critical care nurse, cancer spreads, and often not painlessly....uterine cancer spreads and it can be ugly...but that's just the cases I have seen. The hysterectomies I've seen in little ladies often go home in a day or so...with her complicated history,maybe longer....

Chemo/radiation I think would be excessive at her age.

DNR I believe is reasonable for anyone really over 70 as the liklihood of anyone surviving the violence of resussitation process is low...doesn't mean do not treat...just not go to extraordinary means. My mother in law just died at 98 and was an adament DNR since she was 65 - even through breast cancer at 83 (she had mastectomy,no further treatment and did fine,but she was in good health and had great habits)..

Again, I'm so sorry if it came off as fear mongering - just presenting reality and I tend to be direct.....like YOU!!!

 

[Govtgirl]

Again, thank you all for your repsonses, it's sincerely appreciated. This was all intially diagnosed in the ER, and then we went to my Gyn who confirmed it all, did another ultrasound, etc.

Something I want to point out to everyone, and their Moms, since it was big news to me also, I had no idea: cysts usually do NOT go away on their own after menopause!! When the ER doc mentioned the cyst, I sort of shrugged too, because I get them all the time and they go away. I didn't know at all what a big deal it is. The type of cysts that "just go away" are called "functional cysts", and they happen to PRE-menopausal women.The functional cysts are generally harmless, but my Gyn said they don't happen to post-meno women, all those "workings" have shut down, so when there is a cyst it means something else totally, and need to be checked

Again, I HAD NO IDEA about all that , and the ER doc didn't really stress the importance of the cyst (I beleive) because he was more focused on the cancer. My Gyn confirmed the cyst, big-time, and was really talking like he was confirming the cancer too, talking about an oncologist and surgeon he could recommend, etc.

My Mom has some pain now, and she doesn't handle discomfort well. She's said, "I'll be glad to have the surgery so this will be over", but I've told her, "surgery isn't going to be a walk in the park either, there is going to be discomfort too, but it would be necessary to get the cyst and uterus out."

We will see the Gyn again Thursday. He's not an oncologist so I don't know if he'll be willing to give a prognosis about what would happen without surgery. we'll see.

Basically, I want my Mom to live out the rest of her life as worry-free as possible. She's not really a strong person, either physically or in constitution. If it weren't for the cyst, she'd most likely choose to forget it all, and sit all day and eat chocoate and cookies. She's not supposed to because of the diabetes, but damn the torpedoes at that point. Basically, if she doesn't worry about it, it doesn't exist.

I've edited this to add: I think my Mom would be happiest if she didn't do surgery, and took all this as permission to eat whatever she wanted. She LOVES candy, and still eats it when she knows she's not supposed to, but this way she would eat it with abandon. I know that if I tell her after surgery she will be in rehab for a few weeks, and they are going to feed her a boring diabetic diet, she won't like that one bit, and I honestly think she would refuse surgery just so she could eat candy. But if I tell her that, then that's influencing her!

 

[hiitdogs]

Oh Goodness, I certainly didn't want to give a tone of fear - just reality of what I've seen in 30 years in hospitals....if you feel that what you've seen shows that treatment is worse, that the cancer is slowgrowing, then by all means go with what you have found out......however, in my experience as a critical care nurse, cancer spreads, and often not painlessly....uterine cancer spreads and it can be ugly...but that's just the cases I have seen. The hysterectomies I've seen in little ladies often go home in a day or so...with her complicated history,maybe longer....

Chemo/radiation I think would be excessive at her age.

DNR I believe is reasonable for anyone really over 70 as the liklihood of anyone surviving the violence of resussitation process is low...doesn't mean do not treat...just not go to extraordinary means. My mother in law just died at 98 and was an adament DNR since she was 65 - even through breast cancer at 83 (she had mastectomy,no further treatment and did fine,but she was in good health and had great habits)..

Again, I'm so sorry if it came off as fear mongering - just presenting reality and I tend to be direct.....like YOU!!!

I think there is a distinct difference between being direct and telling people that they will be eaten alive by cancer (like you have told me in a previous post) if they don't go for conventional treatment like surgery, chemo and radiation.

What I have said is that most cancers are slow growing and in fact have been there for many years before they get detected. It is not a sure thing that ALL cancers spread all over the body if not treated with conventional medicine. Not all people are the same and not all cancers are the same. Certainly there are some cancers that are very aggressive and fast growing but that is not the majority.

I have spent not only the last several months in my oncologist's office and in oncology wards but have also seen many of my family members go through surgery and treatments and in many cases the conventional treatment was worse in my view, including my aunt who died a couple of weeks after surgery from complications from surgery. I am stating that depending on other health concerns in some cases the risk of surgery may not outweigh the benefit but it depends on a lot of factors that none of us here as outsiders can judge or give recommendations. Obviously this is a personal view and my experience at oncology and may not match what you experience at an ICU unit.

I am pretty active in the cancer community and I have come across a lot of people who were told by their doctors that they only had 3 to 6 months to live if they didn't do surgery, chemo, radition or all the above and they are still alive years later and most importantly still actively participating in their and their loved ones lives.

As someone who has been effected by cancer, I don't find generalizations helpful because every diagnosis is as individual as the person is. And just because there is treatment alternative or conventional does not automatically mean the condition will be cured or the spread will be stopped or slowed. There is always a risk and there MAY be a benefit. If the benefit outweighs the risk is a personal decision and may vary from person to person, every one has different risk assessments. In the end, it is up to the individual who is effected to make that decision, not the family or friends, not the doctor or anyone else.