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My mother is 92 and I'm seeking advice.

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I need informed advice.  I’m very confused and don’t know what is the right thing to do.  My mother is 92 and started bleeding Jan. 31st After an ultra-sound and a visit to a Gynecologist we know the bleeding is from her uterus.  I'm feeling overwhelmed.  The Dr. wasn’t mean but so matter of fact that I didn’t feel there was any support.  The Dr. let me know that my mother had lived a good 92 years and I would have to think about whether or not we even wanted to try a biopsy.  Which she said she might not be able to do anyway because of mom’s cervix being so closed.  And, if they can perform the biopsy and if it came back positive what then?  At her age would we want to have her go through the surgery?  She said we might not even want to do the biopsy just go home and let happen whatever will happen. What!!!!!    My mother is pretty healthy.  I need to add that she has early onset of Alzheimer’s but still does very well.   Mom is hard of hearing so even though she was sitting right there when the Dr. was speaking she didn’t hear it all.  On the way home I related the conversation and mom’s response was yes, I want the biopsy, otherwise I’ll sit and wonder and worry every day anyway.   The Dr. did say that if when trying to do the biopsy if mom was in pain she would just not do it.  I strongly felt that because of mom’s age the Dr. doesn’t feel like it’s worth going forward because after all she’s lived 92 years.   Has anyone else had experience with treating someone as old as mom.  At this point we don’t know if mom has cancer but the Dr was not encouraging because of mom’s age.  Am I supposed to just give up on my mom because of her age?  Our next appointment is set for March 6th and what do we do if the Dr can't do the biopsy because of the closed cervix?

NorahS
Posts: 93
Joined: Dec 2012

If your mother wants to have the biopsy done, then she should have it done.

A biopsy is only a test - it is not treatment. However, a biopsy will identify which kind of cancer your Mom has. If it's a slow growing cancer, perhaps your Mom will decide to do nothing, or perhaps there is an easy palliative treatment that will allow your mother to live her remaining years comfortably. (Palliative care is just "relieving pain or alleviating a problem without dealing with the underlying cause.")

Futhermore, since there can sometimes be a bit of discomfort with a biopsy, your Mom should be offered medication to relax her beforehand. 

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you for taking the time to respond.  Just reading the stories of all of these brave people on this site has really humbled me.  The Dr. did tell me to give mom 600mg of motrim prior to the procedure but I am very concerned that they won't be able to insert the small tube through her closed cervix.  I strongly got the feeling that the Dr. really didn't even want to do the biopsy so I don't know how much effort will be put in trying to accomplish it.  

Because I've been so stressed as to the right thing to do and because I don't have warm fussy's regarding the Gyn doc I've made another appointment with a new doctor that replaced my mother's primary doctor who recently left our area.  The new doctor aside from being a MD she also believes in holistic treatments.  When our primary doc left all of her paitents were moving to other doctors and even though this one was new to the center there were 300 patients ahead of us when I called a couple of months ago, which meant a long wait.  In the meantime we continued to see the PA that worked with our old primary doc.  Today, I was stressing so much at being at the hands of only the Gyn doc that I called to make an appointment with the new doctor and to make her our primary.  I knew that we wouldn't get in for some time but wanted to get an appointment confirmed.  When I called the receptionist to make the appointment she told me she just spoke with a lady that cancelled her appointment and mom could have that slot and would you believe that it is for the day before her biopsy appointment.  I know I am rattling on and on but this seems like the good Lord is watching over us.  I feel so much better that I can have the council of someone other than just the Gyn even though I know she is the specialist.  Right now I just need caring council.  This site has also made me feel calmer and I hesitated to come here because I thought it would made me feel worse.  I was so wrong. 

Again, thank you NorahS for your time and concern.  

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

We as the children of parents whom are aging think they'll live forever, especially when they're healthy now.  Do agree with the other posting, if your mom wants to proceed with biopsy, by all means, do it.  You mentioned her having alzheimers (not knowing what stage of the disease?) understand she just might not realize what's happening due to her illness.  My mom has  alzheimers and at age of 84 yrs, not sure if I'd put her thru cancer treatments if it was disgnosed.

As I've learned from a friend whom is a hospice nurse, there comes a time when quality of life is better, vs. quantity.  Must say, any type of treatments, whether be chemo or radiation can be very challenging, even for a young and healthy person.  Treatments break down our immune system and make recovery very difficult, then add in a person who is 92 yrs...a lot more difficult to get thru.

My mother in law was diagnosed with lymphoma 3 yrs ago at age of 85 yrs and had no intentions of enduring treatments.  Told doc, I've lived a great life and truly do not want to be sick from treatments.  We had a family discussion with her, but she was adament about no treatments.  To this day, no cancer movement, as doc following via blood testing monthly.  Note -- per her doc, as we age cancer is slower moving (not sure this is true,but sure looks like it in her case).

As I've learned with my mom, if she was diagnosed with some illness, would she treat it????  If answer is NO, why do the biopsy?  Does she have a geriatric doc?  If so, they might have a better feel for what to do, as their speciality is treating the elderly.

In the end this is a very personal decision you and your mom need to make, as we're not in your shoes. 

Best to you and your  mom in your decisions!!!

Jan

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Everything you said is true and certainly makes sense.  Right this moment what makes sense may not go along with my heart so it is a painful, sad struggle within me.  Mom's Alzheimer's is still not too bad, although I don't really know what to compare it to.  Her short-term memory isn't the best although once reminded she usually remembers, I take care of her bills because that became confusing to her, but she knows everyone and is still herself all the times.  I just wish I had all the answers.  I have five siblings so no answer is going to be good for everyone.  Maybe the good Lord allowed for mom to see the MD/Holistic doctor the day before the scheduled biopsy for a reason.  We'll see.

Thank you for your time and your thoughts,

Darlene 

 

 

Ruffy7
Posts: 126
Joined: Sep 2011

What a tough thing for you to have to go through!  My boss's mother (mid 80's, I think) with dementia, fell and broke her hip last year.  Of course, they had surgery and, with her dementia, things went downhill very fast.  As others have said, any kind of surgery/treatment especially for cancer can be very tough on the very old.  I'm 52, just into menopause, because of my closed cervix, they couldn't even do a good D&C because of it and I was totally out for it.  I would think it would be even tougher to do on someone who's been in menopause for 40 years.  Does your mother understand and remember what you and the doc have told her or are you having to constantly (daily) tell her it over?  If she doesn't remember maybe it wouldn't be so bad not to do anything.  This is a very individual decision, looks like none of the options are good, but maybe making the decision that is easiest for you to live with is the way to go.  Good luck and let us know how it goes.  Ruffy

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I've written a longer response under Cindy's comments but I wanted to thank you for your comments.  I am very worried about the Alzheimers creating a downhill spiral if a biopsy creates too much stress, but how do we know since I don't how stressful the biospy will be?  It's a worry.  I am hoping that a bisopy will at least tell us how we can help her the best.  You mentioned that your D&C was difficult but were they able to complete a biopsy?  And if not what did they do?  I'm wondering why they don't give mom twilight sleep or something so the procedure is more comfortable for her.  The doctor said something odd that I didn't think about until later.  During the exam she said that this could be painful because of the cervix but when she was leaving the room I said something about how bad would it be and she said oh not that bad.  I'm very confused but like I've mentioned in other posts she said she would stop if mom was in pain so I don't know whose wishes she plans on following hers or moms.

I will let all you good folks know what happens, that's the least I can do

Darlene.

 

Cindy Bear
Posts: 564
Joined: Jul 2009

Hi. I am sorry you have to be here for your mom. I can only give you my opinion and it's not "informed advice' by any means but here goes. No, you should not give up on your mom because of her age. She state she's in relatively good health. She might not have cancer, but she and you need to know what your facing. It's hard to believe they don't have something that can help "open the cervix' If she wants the biopsy, I would definitely have it done.. even if it means another dr. Secondly, if she has cancer and if it's in it's early stages, then I certainly would not rule out surgery either. I am a firm believer that one never knows what one would do until they are in a certain situation, but if her cancer is advanced, I would not consider chemo at her age.. and it's hard to believe she would want to put herself through that. Let me tell you about drs. When my mother passed away at age 79, 6 mos. after diagnosis and about 4 mos. into "Treatment" and I kept asking for answers about what heppened.. I was patted on the head and told, "She lived a good long  life" She was 79 yrs old.. do not allow this doctor to dictate what tests, what treatment, what course of action is right for your mother based on her age and nothing else..

Big hugs,

Cindy

 

NorahS
Posts: 93
Joined: Dec 2012

Your mother has expressed a wish - and in your opinion it was sincere - to have a biopsy - that's why I feel strongly that it should be done (or at least in her case, honestly attempted). Remember that your mother is the patient here - she is 'driving the bus'.

If your mother had expressed a wish to do nothing, I would hope that you would support her in that as well, because again, she is the patient.  

...IF your mother can have the biopsy, that will tell a lot about IF she has cancer, and if so, what kind of cancer she has. Then she will know what she is facing (your mother was right on in what she said in your original post). She can very likely have a CT scan.

If it is known what kind of cancer she has (IF indeed she has cancer, you don't even know that yet) perhaps she can have surgery, chemo, radiation, or perhaps none of those are good options for her. Perhaps there is an oral chemo pill - yes, google it - which might be beneficial in her case. But you won't know without a biopsy.

I do hope that some treatment, even if there is just some assurance that doing nothing (because the cancer is slow growing) which will benefit your Mom is found.  

 

  

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I've left additional comments under Cindy's post for my full thanks to all of you wonderful people.  I feel so much better about probably moving forward with the biopsy.  We need to know our next move even if it's no move because we can't.  I don't know the odds of mom having cancer verus something else from her bleeding uterus, I don't even know what other things it might be, the doctor was only foucused on worse case scenario and being uprepared for that I was in such shock that I didn't ask the questions I shoud have asked, my stomach was in my throat and when the tears started I focused on not letting mom see me get so upset.  I was just not prepared.  The internet has not been very helpful in that area either, especially because I've searched base on mom's age.  I store in my brain everything all of you have said and I feel so much better prepared than I did.  I can't believe how scared I was to access this site for the first time the other day, I was afriad I would hear only sad things that I didn't think I could handle right now, but even though some of the stories are sad they are also inspirational because of the strength that people show even when they are scared to the bone.   The expirence, insight, first hand knowledge and good ole common sense of others has helped this usually in control lady so much.  I can't even begin to express how thankful I am for anyone that takes the time to comfort others.

Thank you and I will keep you all updated.

Darlene

Kathy G.'s picture
Kathy G.
Posts: 117
Joined: Dec 2012

I agree with Cindy that if your mom wants a biopsy done to know what she is facing a way she be found to get it done. I think we have all experienced a certain level of peace and calm knowing what we were dealing with rather than being in that awful phase of waiting and the imagination running wild!

My father had Alzheimer's and depending on the stage your mom is in should factor into any choices made regarding treatment IF it is cancer. One of the things I hated about alot of the medical community is that they would talk to me as if my dad was not even in the room when relaying information. As you no doubt know even into the late middle stages of Alzheimer's the person still has many moments of clarity and my heart used to break for how disrespectful they were towards dad. He deserved better and I often would turn to him and repeat what was just said b/c he was also hard of hearing. The age thing is another factor where I think older patients are just disregarded by medical personnnel who feel they have lived 'a good long life!'

As we all know getting to be that old is truly a miracle...especially in one piece. It is what many of us strive for and should be respected for...not taken for granted.

As my father's primary caretaker I felt I knew his wishes best and did my best to honor them as he went further down the road of demnetia. At that point only you will probably know how to proceed based on what you know of your mom.

My thoughts and prayers are with you!

 

Kathy

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Since this event occured in our life I've spent so much time on this site reading that I feel like I know some of you and Kathy I have read many of your posts.  Thank you for your thoughts and wisdom.  I was very offended by the doctor commenting about her living a long life that it was all I could do not to rage at her.  I have expereiced the same things you described with your dad.  Mom is hard of hearing too.  She has had a couple of good doctors that speak directly to her and in fact make me feel weird when I offer the answer because she can't hear them.  I actually appreciated the attention they gave directly to her.  I know that I don't want to hear one more person tell me that she has lived a good long life.  If and when my mom is gone I'm afraid someone will say that to me and if they do I'm going to punch them in the mouth.  It's my mother, I dont' care if she is 150 it would still be too soon.  So I'm not repeating my myself I've written a longer response under Cindy's comments.

Thank you for your thoughts, words and prayers, we need them.

Darlene.

 

 

 

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I'm so sorry that I've not responded to everybody's thoughtful and caring comments.  I've been unable to log back in because when I tried the system just kept 'thinking'.  I could read the comments but couldn't respond.  I've change my password and here I am again.  My response is for all of you that have respsonded.  I have been going crazy and I keep wanting to wake up and find that his is a bad dream.  Mom's Alzheimer's was devastating enough and when that happened I remember feeling the same way.  

I don't want to give up on my mom and I have to admit that when the doctor said in front of mom "if she was 30 it would be different but she has lived a long good life"  it knocked the breath out of me.  I guess I was really dumb going into this because it didn't dawn on me that it could be this serious to the point that I'm being told to go home and let her die peacefully.  At least that's the way I heard it.  How do you not fight for your parent?  My mother is not a throw-away.  Now, after that rant, I also have to admit that intellectually I understand more now after reading some of the comments here that I have to focus on mom and what is best for mom and her quality of life.  She definitly said she wanted to know but then the next day she forgot, but I know she will probably remember at some point again because that's what she does.  My mom's Alzheimers is not so far advanced (in my opinion) where you can't have a conversation with her even though it was diagnosed almost five years ago.  As gentle a lady as she is she is one of the strongest ladies I know

I'm torn with guilt because I don't want mom to go through a biopsy just so I would know's what if we already know we won't put her through the tough surgeries, chemo and radiation or whatever that could follow, how does that help mom.  But on the other hand, Cindy I thought about what you said and how do we give up when we don't know what we are dealing with. I've already ordered something called ZNatural that I read about on this site from other folks cause I'm willing to do whatever is needed.  I did read that one lady was put to sleep and they dialated her cervix because even though she was much younger her cervix was closed too.  So I'm not sure why they can't make things more comfortable for mom.  Believe me I will ask that question.

Because of the doctor's attitude and knowing what she thinks, I was nervous about all of this without other medical council so I called and made an appointment with the new doctor that replaced mom’s original primary that left the area.  She is an MD but also believes and practices holistic healing and she’s trained in geriatrics. We have not seen her before because when my sister called to transfer to her there was 300 patients ahead of her and a few months wait.  But I thought I wanted to at least get an appointment on the calendar.  I called an the scheduler told me that a lady just before me cancelled her appointment and she could get me in at 3:30pm on the 5th.   Can you believe that, the day before the scheduled biopsy?  I can’t believe the timing but am so very happy to be able to talk to someone else.  The Lord was surely watching out for us.  Hopefully she won't make me feel so guilty if we decide to go forward with the biospy.

Sorry about my font it keeps changing me.  I want to again thank all of you, if I could hug you all I would.  Although you don't want anyone else to suffer it does help to know others have gone through this too which helps  me to know I can get through it too.  Thank you for talking to me.  I know that many on this site are suffering personally far more that me and have parents suffering that are younger than my mother, so from the bottom of my heart thank you for still trying to comfort and help me.  You don't how much you have helped.  I have listened to all advice given and all of it helps me tremendously in moving forward.  I have to say at this very moment I feel we need to do the biopsy.  Who knows what I will think tomorrow but tonight that's where my heart and head are at.

You all are so wonderful and I wished you all lived next door.

Darlene

cleo
Posts: 125
Joined: Sep 2009

I am sorry that you have had to join us.    My mum had Altz and was 2 weeks away from 95 when she died.  She was fit,  loved walking and going everywhere with me until the last 6 months.   However  I have been along the cancer route and would not have wanted to put my mum through that at her age, particularly as she had got to a stage when she did not want 'strangers' assisting her.      I would have wanted to know the type of cancer if that could be diagnosed without too much stress for her and then go the holistic route as I also believe in quality of life.    The time comes when the head has to overrule the heart, and it is very difficult.    When I look back I ask myself if I did all that I could to ensure that mum's quality of life was the best possible.  The fact that I can say yes is a great comfort.     My thoughts are with you.  

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you for your words of wisdom.  Please read what I wrote under Cindy's comments so I don't bore everyone with the same stuff.  But I wanted you to know that your comment about how you would want to know the type of cancer if it can be diagnosed without too much stress so to know what holistic route may be out there.  To do nothing is just not in my nature and your words along with others helped me to (at this moment) feel we need to move forward with the biopsy.  I will also look forward to hearing what mom's new primary doctor has to say.  I am concerned knowing that the Gynecologist doesn't really want to do the biopsy and said she would stop if mom is any pain.  I'm not sure you can do this without some discomfort so I hope she doesn't use this as an excuse to not do it.   I will keep everyone updated on what we find out.  

Thank you, thank you so much!  

Darlene

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I've found many in the medical community tend to not view our "elders" in a good light.  They think about how long they've lived and why bother if they have a disease, let them go, as not worth the treatments.  In other words, they're too old and lived a good life.  

As you said, TO DO NOTHING IS JUST NOT IN MY NATURE".  I'm with you, so proceed if this is your gut feeling.  Then after the results, gather the family and make a decision to proceed or allow her to live out her life with no treatments.  

Also, many docs will rethink how they treat the elderly.  For instance, mother n law was having a colonoscopy and with most of us, we just adminster the drink and go for procedure at facility next day.  With MIL, doc had her admitted to hospital over nite and had the staff monitor her, and next day had procedure at hospital.  As well with your mom, they can adjust for the tight cervix and possibly give her some sedative so she's comfortable during procedure...why have her suffer at her age.

Wishing you and your mom the best and keep us posted~

Jan

 

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

I wholly agree with her.!

but want to add Why should any of us suffer. If there is anything to be done to release any suffering or pain in any procedure we should all demand it!

also factually,when one is in pain and blood pressure rises, healing slows, so pain free also hastens healing from various procedures.

i do think though you and your sibs should speak to an Onco or Palliative care Social Worker, Psychologist or Religious Leader, as your questions and quandaries are not new to them and may go a long way to helping you.  It is truly sad that so much responsibility is placed on the ill and family! But medicine today is so afraid of the Letiginous patient and family that it clouds their response.

medicine's first axiom is Do No Harm, I would add to that both physically and spiritually.

re the horrible statement of 'outies' You should be thankful..bla bla bla,  we are never thAkful enougH for what we have nor should we be, we all want more, more of a good life, more off a pain free life more of whatever, as do the Docs!

the benefit of your Mom's Altzheimers is that she suffers from thinking less than you do! Share your concerns with us AND your sibs. Think of your worrying for your Mom as your gift to her, as a thanks for her giving so much to you all all these years.

Do a Yoga class with your Mom. Take a deep breath, smell the flowers, go to the zoo. Enjoy every minute of life.

Sara

p.s. I haven't a clue how the font keeps changing, I wrote to Beila in thRee sizes and fonts I didn't seem to have any control of, I guess that is a metaphOr of what we are all going thru, sitting back and realizing we have mucH less, even no contol  over so much of life.

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you ladies for your comments.  I listen and digest everything that is given to me on this site.  My emotions go up and down, just when I feel positive about what I'm doing the next day I just feel depressed.  But, I know that's normal and that's mainly from from what others have said.  I'm still planning on the biopsy and if this doctor won't do it, there are other doctors out there, in fact after speaking with our new primary the day before the scheduled biopsy maybe she'll recommend another doctor and/or offer advice as to what else mom can take to lessen the pain other than just the 600mg of motrim that the Gyn. suggested.  

I'm still have a problem with logging back on to this site each time.  It finally times out on me and the only way I can access to respond is to reset my password.  But I will do that each time if needed. 

Ladies, Blessing to one and all.

Darlene    

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Here's another thought as to why you might be so up/down on all this decision stuff ---- you don't have enough information yet to  make an educated decision?  Possibly until the biopsy comes back you can't say go this or that direction...can you?  The biopsy might not be as bad as one thinks, then you won't have to worry about treatments, etc.  Might just need some type of meds to help and nothing too harsh for your mom.

Just thinking outloud here ....... and be patient with yourself, the decision will hit you when least expecting.  I usually would have some major decisions to make and just couldn't decide which direction to go.  I'd go out for a nice run and think thru the subject at hand and by the end of my run I'd have made up my mind on decision to go...that was it, THE END!!

Good luck~

Jan

Double Whammy's picture
Double Whammy
Posts: 2337
Joined: Jun 2010

but I want to comment on the pain with biopsy.  The cramping can be helped with ibuprofen or something stronger -if you mom can tolerate the meds - but if the doc can't get into the cervix to even do a biopsy, I don't know what the alternative is.  They DO use sedation when indicated, so ask about it.  Of course, a D & C could be performed under general anesthesia.  Ask if your mom is a candidate for that or if anesthesia is too risky at her age. 

Your mom's age is certainly a major factor in treatment choices and options, but I hope you will know just what the heck there is to treat (or not) first.  Uterine bleeding at 92 is certainly not normal but at this point, that's all you know. 

My dear 92-year-old friend stopped having mammograms many years ago because she said if she developed breast cancer, she would not treat it at her age so she'd rather just not know.  This, however, was her decision, not something someone else told her to do!   And, I'm not sure what she would do if she actually found a lump.  She might change her mind and it is her prerogative to do just that.  It's when we're not given choices - or we feel we're not given choices, that we become upset - even if our choice would be to "let nature take its course".

Good luck to you and your mom on the 5th.  I hope the new doc listens and offers some thoughtful suggestions and you have an actual conversation.  

Suzanne   

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Jan & Suzanne,

Thank you for your time and words.  I've said it before, but I wished you all lived around the corner from me.  It's hard to make close friends when you stay at home a lot and then you never know the true nature of someone that you are trying to befriend.  What I have found on this site are real people, speaking from their hearts, giving up of their time to help others.  You are all what I call real people, you have learned not to waste your time on petty stuff and just focus on taking that next step and just keep moving forward.    I wish I could do more for each of you.  I'm the 'child' in this arena and all I can do is to say to each and every one of you that you are all wonderful.  I remember a conversation with my Aunt some years ago.  She had lost both of her sons and I asked “Aunt Ginny how did you stand it?” and she responded with “if I had another choice I would have taken it but all I can do is stand it.”  Isn’t that the truth and I’ve never forgotten her words.

Yesterday was a good day where I felt almost normal, today I'm letting worry get to me and then I think about all of you. They say that God doesn't give us more than we can handle but I swear all of you are superwomen.  I am in awe of your strength and humbled to the bone.  I'm sure in your quiet moments you may have doubts about what you can handle, but believe me I was led to this site for a reason and the reason was because of all of you.    

With momma, if they can't do the biopsy or if the biopsy is positive I counting on the new doctor to help me with any holistic knowledge she may have.  I know that momma's age restricts what we can or even should do, but the only way I feel both us can have any peace is to be working on something that could help instead of doing nothing.  I know you may think that with momma having Alzheimer's that she won't remember so maybe we should just let it go.  That's not the case.  She may not think about it every moment like I seem to be doing, but for example, one of my brothers and his wife were visiting yesterday and out of the blue momma starting telling my SIL her concerns and that we are going to try a biopsy to find out what is going on.  But be assured I won't let anyone hurt my mother more than necessary.  And I will check with the MD on the 5th for suggestions of other pain meds mom could take and share that with the Gynecologist.  Also, Suzanne I will check into a D & C and see if that is an option if they can't do the biopsy.  The waiting is awful.  I know what the waiting is like; I've had three major surgeries, once for uterus to remove grapefruit sized tumor, once for tumor ridden ovaries and then for what was described as a mass in my abdomen.  Each time I had to wait to find out if I had cancer.  I was lucky each time, and I don't know why but this waiting to find out about my momma is worse.        

Jan, I feel like I know you from all of the comments I’ve read where you help, give advice based on your experience and in general give folks comfort in just being there.  Could you please move to the Phoenix area, LOL. 

I had to change my password again to log back in, really strange, but I promise to keep all of you updated.  Today I also received worrying information about a very close friend, I’ve known her for most of my life, and she’s like a sister.  She had ovarian cancer diagnosed Dec 26th, 2011.  I’m sorry I don’t know what type I know she was a Stage 3, but someone else told her stage IV so I’m not sure.  She had surgery and then 6 months of chemo, no radiation though.  She finished her treatments last May.  Her CA125’s have been at 9 and then 11 and this week it was 14.  They did a CAT and told her there is a spot on her liver.  That’s all we know right now.  I am going to recommend she join this network (if she hasn’t already) because I know I have felt so much better reading and learning what all of you already know.  You are right, knowledge does help.

Thank you, thank you, and thank you for caring.

Darlene    

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Tomorrow is the big day when the Gynecologist will attempt to do a biopsy on mom.  I still don’t know if it will happen.  It could very well be that in can’t be done due to the closed cervix.  And, I still have no faith that the doctor wants to even try.  We will see.  I don’t know what is the right thing to do so I’m going to let God lead wherever this takes us.

The great news is that we did see her new primary doctor today and we both absolutely loved her.  Loved, loved, loved her!  She gave me a referral to her personal Gynecologist if after tomorrow we want a second opinion.   She is also concerned with what’s going on with mom, but she didn’t miss the class that taught a doctor on how to speak to a patient.   I don’t know where this will all go, but it feels so good to have someone to fall back on when I need advice.  Also, the fact that she practices holistically, gives me hope that if need be we can be proactive in another way as opposed to doing nothing.  I’m not getting a lot of positive what ifs but I know you never know and everyone is unique.    I’ll update you on what occurs tomorrow.

Thank you for allowing me to share my thoughts and feelings.

Darlene

 

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

We will all be thinkingabout you and hope you get the information you need to make an informed decision without undue discomfort on you Mom's part.  Glad your new doc worked out.  I was able to switch PCP's recently and am so grateful.  She'swonderful and definitely has my back.

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Connie,  Thank you for taking the time to comment.  All of the words of wisdom on this site has made me such a stronger person.  Who would have thought???  And you are right, having a doctor who you feel has your back is a huge comfort and helps to not feel like you are in this alone.  Below I've added an update on our progress.  Thank you so much and God Bless you.

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jazzy1
Posts: 1387
Joined: Mar 2010

You've got your head on straight and lots of things in the works.  Love the good doc comment as that's so, so important to have confidence in a good, qualified doc.  

Keep us posted on the progress today and I'll keep you and your lovely mom in my prayers!!! Things will work out, you must believe that one.....

 

Hugs,

Jan

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Hi Jan, you can read my update on our progress below.  Thank you so much.

Stabler
Posts: 49
Joined: Feb 2013

Keep us posted on the progress.  I'll keep you and your mom in my prayers!!!

God Bless

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you so much for your prayers.  God bless you as well.  I added an update on our progress below.

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Jan

You are so amazing.  I’ve  read what you have gone through and I honestly am so humbled by your positive advice to others, when I know darn well you must ‘as my mom would say’ at times feel like  you have been pulled through a knothole.   

Well today was another day controlled by God. I was dreading meeting with this doctor again and also she made me a believer that we probably couldn't do the biopsy because of the closed uterus due to mom's age. First, the doctor wasn't even there. We were seen by the sweetest Nurse Practitioner we could ever have wished for. Second - The biopsy was a success.  Can you believe that!!!!  I told my daughter that I didn't think I could stay in the room, I didn't think I could watch mom in pain.  She grabbed her grandma’s right hand and said that's okay mom I'll stay. I looked at her and then at mom and I thought if mom can go through it the least I could do is be there for her. I stayed and mom was a trooper. She handled it the way I've always known her to handle most things. Quietly and with an inner strength I wish I had. She is absolutely amazing. We will know the results in about one week. Continue to pray, please. We celebrated by going to the Cheese Cake Factory for and early dinner. However, the story is not over yet.......after accomplishing what I thought could not be done today and that was amazing, upon arriving home I was helping mom take her dress pants off and she became unbalanced and fell straight back on her back and hit her head on the wall. She has a lump on her head and after many attempts I finally was able to get her up. She's fine, but can you believe she goes through all what she did today and then at home where she should be safe her daughter almost kills her!!!!!! It would be funny if it hadn't been so scary. But all seems well and mom is resting and she is not in any pain from the biopsy or from me J.   Thanks to all of you for your warm and caring thoughts, you have no idea the strength you have given me.  I know this is not over yet but I feel that whatever happens we will be better prepared.  God bless all of you and I’ll update you when I hear the results.. 

Double Whammy's picture
Double Whammy
Posts: 2337
Joined: Jun 2010

 I'm so pleased it went so well and that you were comfortable with the nurse practitioner.  Here's hoping for good results.

Suzanne

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Juno22
Posts: 39
Joined: Feb 2013

Suzanne, you are another amazing woman on this site.  Thank you for caring enough to share your experience and your thoughts.  When I first found this website I found myself reading so many of the stories written here and the hell that many have gone through.  And I thought these folks don't want or need to hear my woe is me story about my mother, I mean why would any of you want to hear from someone that isn't physically suffering themselves, going through the same things you are or have gone through.  But, I was so scared, feeling out of control and so ignorant of what was happening that the need to talk to someone outweighed my fear of intruding on more personal stories.  I've said it before, but the people on the site are the most 'real' people I have ever had the pleasure to 'meet'.  

Because of the kindness and support given to me I promised myself that I would keep you all updated on our progress.  That is the only thing I found disappointing on this site is that some will tell their story but never return to share an update on their status so we know how they are doing.  That's a shame because as strange as it may sound to 'others' you begin to feel invested in a person's journey, worry for them and you want to know how they are doing.  I promise to update you when we know more.   

Suzanne, thank you for caring.

Darlene 

 

 

   

NorahS
Posts: 93
Joined: Dec 2012

 

Very happy that it worked out!  I am smiling from ear to ear (although I'm sorry to hear about the bump on the head). 

With the information from the biopsy it will be possible to determine the options and from there determine the course of action.

 

Smile

 

PS - Darlene, I know it can be disappointing that we do not 'hear' back from others, however, unless I find out otherwise, I always assume that it's likely that those who do not return are usually doing well. My reasoning is that if they are currently doing well, they may have largely been able to put their diagnosis out of their mind. However, if they come here (particularly if they have one of the more uncommon aggressive tumor types - UPSC or MMMT) and read of recurrences - or even possible recurrences - it brings them down because it's a reminder of what they might yet have to face in the future.

And if this is the case, I don't hold it against them, in fact, I celebrate with them. We all have to do what we need to do because we have to survive as long as we can with a good QOL (Quality Of Life).  

Kathy G.'s picture
Kathy G.
Posts: 117
Joined: Dec 2012

Hi Darlene!

I am SO glad to hear you were able to get your mom' biopsy done with minimal pain! Hopefully the results will be good and this chapter in your lives will be over! Will  pray for that. If not, as you noted above the Good Lord certainly carries us in difficult times and I am sure will make any challenges easier to handle than you would normally expect.

I, too, am impressed with these women on this site...particularly the ones with advanced stages of the disease who have had to go through difficult and time-consuming treatments time and time again. I can't imagine the stress factor, how it interferes in one's life, etc., but they are on here sharing thier journey's and supporting other members. It boggles my mind. I miss some of the ladies who supported me when I first signed on with my diagnosis and like Norah says can only hope they are not around the boards b/c they are doing well.

Please let us know your mom's results when you get them. and if they are totally negative please try not to knock her over and bump her head while you dance for joy! Poor woman...lol!Tongue Out

Kathy

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Kathy.......you  made me laugh.  Thank you for all of your advise.  Mom said her head feels okay now although she said it hurt all night, but now she said her butt was sore.  How ironic that I'm running around like a mad lady trying to give mom the best medical care I can and then I knock her senseless.  It could have been very serious but when I  visualize how it looked last night I laugh.  We haven't laughed a lot lately and I'm just sorry that it took my mom knocked silly to make us smile!!!.

Darlene

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you Norah,  You are so right on both counts.  I'm sure some may be confused why I'm so happy even though I know this could lead to tough time ahead, but I was so afraid that we wouldn't know what we were dealing with and our plan of attack would be willy nilly or doing nothing at all.  We need that information.  And you are right about those that don't return to this site to keep us updated.  I will now consider they have good news and good things happening and the dire need to talk to someone has been lessened to the point that they can carry on without the extra support.  You are so wise.

Thank you,

Darlene  

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jazzy1
Posts: 1387
Joined: Mar 2010

Well you made it thru, even after moms fall at her home...gee!  Some how, by the grace of God we do endure.  Don't ask why, but we keep putting one foot in front of the other and get to where we are to be...might not be the best spot, but our spot at the moment.

Thanks for the kind words, as everyone on this site has been there for me during my beginnings on this cancer journey.  My turn to repay others with whatever type of support I can give.  Honestly I enjoy helping others, but know I'm no expert, just express what I've learned in hopes others can gain strength to get thru all the crazies with cancer diagnosis.

Now the wait for you and your mom and at least we can sorta laugh about the fall.  I know it could have been very serious, but in light of the stress of cancer, we have to find some positives and laughs along the way or we'll all go crazy.  As they say, LAUGHTER IS THE BEST MEDICINE~

We're here for you, so plse keep us posted on the results.....

Jan

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Glad your. mother and you made it through the procedure.  Now the tough time of waiting for the results is hard,too.  I pray for good results for your Mom so you can put this all behind you.  Your Mother is lucky to have such a caring daughter, and granddaughter.  Enjoy each day as you wait for the results.  In peace and caring.

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Thank you for your prayers.  We appreciate all of the caring that has been offered to us.  Sometimes I don't think I'm the best daughter, but my mother has been the most loving, sweet lady any child could ever wish for and the reason all of my siblings are very protective of her.  My daughter was such a source of strength to me and I didn't realize how good that support felt until afterwards.  But I have to admit that she insisted on going with us to the doctor yesterday because I think she was waiting to punch the doctor in the nose if she was rude to us again.  So the doctor was lucky she wasnt there and we were blessed by having that wonderful nurse practitioner in her place.  So I guess we were all lucky Laughing.

I'm trying not to think about the results.  My sense of humor has returned and I want to stay in this mood for as long as I can.

Take care,

Darlene 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I will definitly keep you updated on our journey.  I've said this before too (I keep repeating myself) but I wished all of you ladies lived on my street so when someone said do you have any friends I could say....all of them.    Mom, this morning told me her head was okay but her butt was sore.  Our adventure continues.

By the way, I know some of you will read this but I have also contacted the American Cancer Society to put out a warning announcement about a pirvate message (via CSN) sent to me this morning regarding a request to help with a huge amount of funds from outside of the country.  The message plays on a persons emotions regarding donating the money to help the sick, etc., etc.  It is so obvious to me that it is scam probably sent from Nigeria.   I know that there are  many on this site that are sick, lonely and could be easy prey for these heartless crooks so ACS said they would do something (I'm not sure what yet) they are supposed to call me later today sometime.  But, in the meantime please be careful of this type of scam coming through as a private message within our network.  

Take care,

Darlene

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Juno22
Posts: 39
Joined: Feb 2013

Yesterday made it one week since mom's biopsy and we hadn't heard from the doctor so we gave her office a call today.  They said that mom's tissue taken during biopsy came back normal.  WHAT!!!!!   I can hardly believe it and I want to so much.  I know the doctor doesn't trust that's it's accurate because she wants to do another biopsy on mom to take more tissue.  I don't know what 'a lot' of tissue looks like but it seemed that the PA took a lot of stuff that filled up a small cup.  Maybe the doctor has more doubts because of mom's age and because she didn't personally do the biopsy (which I still think was a blessing).  But then again, what caused the bleeding. She still spots occasionally. They did say that mom's uterus lining showed some thickening but that's all we really know in addition to the tissue that was tested being normal.  God only knows how grateful I am for that.

Mom said she didn't mind doing another biopsy but I wonder if we shouldn't just take the blessing and run with it.  God gave me peace the day the PA was able to even do the biopsy and then keeping the doctor away to ensure the test was going to get done because I'm sure the doctor was NOT going to do the test.  What I do know is that we don't have to make a dicision today.  I think we want to enjoy the moment and then figure out what we need or should do.  I may leave this one up to mom.  Yes, she has alzheimers but she can still think.   

Ladies, I cannot say thank you enough for your words of wisdom and your selfless support.  I will pray for each and every one of you.  If we decide to continue with another biopsy I will keep you updated on the results.  

I wished you all lived next door (you may be tired of hearing that, but it's how I truly feel).

Darlene

 

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

I have been following your mom and your story and been praying for a good results. So happy to hear that so far it is good news.  But do keep pushing for a why for the bleeding because it is not normal after menopause. Mom's are great to have around as long as you can have them.  Mine passed away from a soft tissue sarcoma that was stage 4 before they found it and it had spread throughout her body.  She was 68 when she died back in 1992.  I still miss her to this day. Will keep you both in my prayers. trish

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jazzy1
Posts: 1387
Joined: Mar 2010

You know I just had a thought as my mother n law had some vaginal bleeding a few years back and doc did a biopsy and nothing showed up.  Just pushed it off to getting older and possibly dryness in vaginal area due to menopause.  The spotting went on for another day, probably due to the biopsy scraping and nothing since.  Has been well over 7 years ago and she's doing very well.

Darlene, none of us can tell you what to do, but if this last procedure went well possibly consider another one if doc is suggesting.  But...in back of your mind if they find anything such as cancer will you even treat????  Possibly all you're wanting is closure to find out yes there is something or no she's fine and that's all you need.  

I'll keep you in my thoughts and prayers for finding a good path to follow to get the proper answers.

Cyber hugs,

Jan

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I meant to ask you about your mother-in-law.  How old was she when she experienced her vaginal bleeding and do you remember how long she bled prior to the biopsy?  It sounds like after the biopsy she only spotted and then it stopped.  Mom's bleeding has also stopped.   

Hybridspirits's picture
Hybridspirits
Posts: 152
Joined: Nov 2012

Mine stopped after the in the offie biopsy and came back 15 mnths later,  cancer.  Found through the d&c.  Thoughts are that it might have been per cancer or just the very early stages.  you can never tell with this cancer.  It can spot on and off for a while or stop for a while

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

My mothers Gyno told me that if the bleeding stopped it didn't mean anything, so I know that we are not home free but I think it helps mom not to worry about it as much and that means something to me.  Thank you for taking the time to comment, all advice and historical experience is helpful.  

Darlene 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

MIL vaginal bleeding stopped a few days later.  Now that I've got my thinking cap on, remembering the doc went up further inside the vaginal area and looking around and might have snipped something that looked strange. This was so long ago, can't remember, but today no cancer in any of the female parts nor  bleeding.

 

I'd go with a few others whom posted, just because NO BLEEDING doesn't mean one is out of the woods.  Hate to say that, but with cancer it might be laying low and bingo back up again with some bleeding.  Too many unknowns with cancer.

 

Best to you,

Jan

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

Every time someone on this site takes the time to read and respond to someone else's problems or fears touches my heart do deeply, especially, when I know that they themselves are going through so much.   So thank you Trisha for caring.  I think we will probably go for another biopsy because as you said the bleeding is not normal.  I'm talking to mom about it and still want her input.  I don't want fear to lead us (me) but it is so hard not to let it get the better of you.  

I think we will take the weekend feeling happy for a couple of days and then face our decision next week.  Of course I worry if we do another biopsy and it doesn't turn out well I'm concerned as to what they can do for mom at her age.  I'm sorry you lost your mother at such a young age.  It's just not fair.  I fully understand about wanting to keep our mom's around as long as possible.  The doctor's comments about whether or not she should even have a biopsy to begin with and "she's had a long life, you might what to take her home and let happen whatever happens" sent me on a downward spiral of fear and depression.  I know we have been lucky to have mom for so long, but is it ever long enough?  Thank you for your thoughts and prayers, we will take all we can get.  I pray several times a day for all of the folks on this site.  I'll keep you updated.

Darlene

Kathy G.'s picture
Kathy G.
Posts: 117
Joined: Dec 2012

Hi Darlene,

I have also been following your posts and was glad to hear your mom's results came back negative!

However, I have to agree with some of the 'veterans' of this board above about considering having another biopsy done. My personal expereince was that back in 08 I had my 1st ever abnormal pap, but my gynecologist said it was due to be starting menopause. He did a biopsy, but it came back negative.

 I went for 11 months after that w/out a period & the 12th month my mother passed away, and I had a full-blown period again. The gyno decided against doing a biopsy partly b/c he knew how difficult they were for me and also b/c I had not gone the 12 months w/out a period and my mother dying was obviously stressful.

Now I look back and wonder if I had a biopsy in 09, 2010 or 2011 it would have been positive as this cancer is so slow-growing in many cases. I am fortunate in 2013 it was a 1a/grade1, but still cancer is cancer. I know you're also in a position of wondering if you would even treat it IF it was cancer, but still I would want to know.

It is funny how when we look back things can appear different.I said at the time of my diagnosis I had no other symptoms but the spotting I thought was related to UTI's and then the discharge that started, but I feel so much healthier, less tired and stressed now and even look better that I wonder if that was not the cancer.

My thoughts are with you as you go thru the decision making process. You have been lucky to have your mom so long in your life, and I think the longer you have someone the harder it is to bear thinking of them getting sick.

Kathy

 

 

Clouth
Posts: 10
Joined: Jul 2012

I just wanted to add that when I started this journey with my mom last summer, she was having bleeding. The gyn who  did the biopsy told us that if it came back negative, they would recommend a d&c type of procedure which would take a closer look at the uterine lining.

Best wishes,

KrisC

 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I'm sorry it's taken me so long to respond.  In the middle of all of this we are in the middle of trying to move to a new home and I'm ashamed to say that I've put mom's biopsy at the back of my mind.  We did talk about it today when mom mentioned that she hasn't bled at all for some time now.  She knows that that doesn't really mean anything because the doctor told me when I asked that if the bleeding stopped it didn't mean anything.  

One of my brothers is coming for a visit I think sometime next week.  I think I will wait to talk to him, if nothing else I could use his support but I hope its not just because I want another week of pretending all is well.  I want you all to know that I consider all of your comments when trying to figure out what to do.  You all have been a blessing to me and I'm feel every thankful.  One decision I did make was to change mom's diet, not completely but I'm trying.  One thing I read was that if you are going to eat bread that the best is Rye or Pumpernickel, I don't know why but we like Rye so we switched.   

I have to say that I really don't know what we should do. While my analytical personality requires answers, my little girl scared to death self wants to hide my head in the sand and pretend all is well.  The thing that makes the decision more difficult is that if they do find cancer they probably won't treat her because they don't think she could handle it at her a age.  As scary as cancer is, and good God it is scary...it's as scary to me that there wouldn’t be anything they can do to help her get better.   I don't know if they would want to do a d&c on mom, I'm unfamiliar with how rough a procedure this is but I know everyone was surprised by how well mom handled the biopsy.  She's a very strong lady. 

I wanted to mention that I read something about thickening of the uterus lining could cause bleeding but it didn't say that it was from cancer, it just mentioned that thickening as well as thinning of the lining can cause bleeding.  I don't know if any of you can offer clarification on this but I'm hoping that there can be thickening without cancer having caused it.  I know I'm grasping at straws but I'm looking for other reasons that she could have been bleeding other than cancer.  You know my mother is so special and unique that even if someone said there could be no other reason, I feel she would be the exception.  

I will continue to pray for all of you, this isn't just lip service; I truly do include you in my prayers.

)))))Hugs(((((

Darlene 

Juno22's picture
Juno22
Posts: 39
Joined: Feb 2013

I just received a call from the PA that did the biopsy.  I thought they wanted to do another biopsy because they wanted to test more cells.  What she told me is that the results from mom's biopsy were inconclusive due to the biopsy containing a lot of fluid but very few cells to test.  I don't know if this means that they couldn’t test at all or if what cells they had were normal but they wanted more.  The PA really didn't know the answer.  So instead of another biopsy what they want to do is set up a time for mom to have a D & C.  

They would have to put mom under general anesthesia to do this out-patient procedure.   I think they forget that mom has Alzheimer’s.  There are studies to show that surgery for sure and probably anesthesia causes Post Operative Cognitive Dysfunction.  In other words it can speed up the effects of this disease.   I don't know what to do.   If she has the D & C the results might turn out okay for both cancer and with no adverse Alzheimer affects (but not likely), or mom has cancer that they  probably can't really treat due to her age AND her Alzheimer's is worse, or she has no cancer BUT her Alzheimer's is worse.    I don’t even know if the studies would include a D & C as a “surgery” or if a D & C can be done without anesthesia? 

I know that I need to get more information but with the Alzheimer’s and mom’s age it throws all standard thinking and treatments out the window.  The problem I’m finding is that doctor’s have tunnel vision and treat what they are specialized in and don’t treat the entire body which is so important in mom’s case.  In mom’s case I’m fearful that the cure may be worse than the disease..  Does anyone have experience with anesthesia and Alzheimer’s?   I’ve read many studies online regarding affects of surgeries/anesthesia on Alzheimer’s but even so I don’t know where a D & C falls in that category.  From I’ve read the jury is still out on the anesthesia part but surgeries for sure cause an inflammation that creates the problem for dementia type diseases.  I’m rambling so I’m going to close for now.  My head is whirling.

Thank you my friends for being a rock to lean on.

Darlene 

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