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susanwales 
We are stunned, but I refuse to complain, especially after reading Becky's post tonight that her mother has been admitted to Hospice. My mother is cancer free, and was stage I, how can I complain too loudly? But my heart hurts so much for my mother and the disappointment of today.
Her oncologist's associate examined Mother today. She also repeated all the glowing results . . . C.A.T. scan totally clean, CA-125 - 27 that we had been told by phone. Her next words were the ones that almost cause us to fall on the floor . . . since you are now cancer free, and you're doing so well on the chemo, our team met this morning, and the doctor has decided to order 9 more chemo treatments! My sister, mother, and I said, "What?" in unison. Of course our question was . . . if she is cancer free and her CA-125 is normal, then why? "That's the reason he wants to continue . . . he wants to keep her that way."
Mother immediately asked if she could have her chemo near her home at a clinic owned by Emory University, one of the top cancer hospitals in the Southeast. The younger doctor encouraged us to ask the oncologist. Mother explained the reasons for the request that she had been away from home for 9 months, and could hardly wait to return home.
When the doctor walked in, he said, "I understand you are upset about the 9 additional additional chemo treatments I've ordered." We told him that was putting it mildly! He repeated what the younger doctor had told us, "It's because you are doing so well, and we don't want that to change. We believe that you will be "cured" of this cancer if you will have the other 9 treatments. He then explained that Mother's life expectancy was 92-95, and if she followed his regimen she would never had the cancer return in her lifetime.
When Mother asked him if she could go home and have her treatments at the nearby cancer clinic, he said, "No, he wanted to monitor it, and he wanted her close to the hospital." We carefully chose this oncologist, and his patients have a low mortality rate, so we finally agreed. He promised us that he would reevaluate after three treatments since Mother was so opposed to the idea.
So next week . . . Mother is back in chemo and will remain in Atlanta for 9+ more weeks. We are so grateful that she has done so well, but living away from home is so difficult for Mother; however, we will take one day at a time, and follow doctor's orders.
We realize that the important thing is that Mother is alive and doing amazingly well. Sorry to complain . . . it was just such an incredible shock! Please keep Mother in your prayers as she musters up the courage and strength to face 9 more chemo treatments.
The good news is that the doctor gave Mother permission to go home for a long weekend! We are at home in Alabama for the holiday weekend, and do not have to return to Atlanta until Tuesday for her blood test.
2 Timothy 1:12
"For I know whom I have believed, and am persuaded that he is able to keep that which I have committed unto him this day."
Love and Hugs to all!
XOX
Susan Wales
Comments
I was just looking at the calender and mom will be home by thanksgiving.....I think they are looking after your mother in extending treatments. Sending you and your family strength to get through these next 9 weeks. Give your mom a huge well done from me....and a great big hug!
buttany1
Oh my gosh.. what a shock to read.. and so unexpected.. That is a phenomenal amount of chemo for anyone to have to endure.. In the UK they are much more conservative and the belief is that it is best to give chemo with as many long breaks as possible in between.. and that there is no better outcome from being more aggressive.. I wis the world could agree on these things.. The main thing is that she is free.. really hope the doctor is satisfied after this effort and that is is easy to tolerate.. How disappointing not to be going home yet.. Give here my best wishes.. and to you too. xxxxxx
Halli
Dear Susan and Mimi
I`m so disappointed for Mimi, however this is what the "BEST" do to further life expectancy.I`ll continue my ramblings in messages to both of you...xxLinda
Lindaheff
Dear Friends!
Thank you for your encouraging words and understanding. We are feeling much better this morning, and realize this is a small sacrifice to make for a longer life expectancy . . . . being away from home another 9+ months. Beth, thank you for the reminder that we will be home by Thanksgiving! This will be the most thankful Thanksgiving ever!
Linda, I think of how gracious you were a couple of weeks ago when you learned that your chemo would continue indefinitely. Nine months is truly a small price to pay to increase one's life expectancy.
And Inka, it's just wonderful to have you with your encouragement and bright light back in the loop, and as usual, your heartfelt understanding. Welcome back!
We really appreciate all of you, more than you will ever know! And as another New Jersey girl, Gloria Gaynor sings . . . I (We) WILL SURVIVE! That should be our theme song!
Mother is relishing in being at home this morning! Finding joy in each day despite the circumstances does make each day special. Thank you again!
Love to all!
XOX
Susan Wales
susanwales
Dear Susan, I just wanted to offer my support also. I agree that it is very disappointed to have to continue chemo, but it is better to be safe than sorry. It will be over before you know it. Love and hugs, Anita
anitaama
Thanks Anita! We are doing so much better this morning, thanks to the support of all of you. It's really a small price to pay. It took a few hours to recover from the shock and disappointment. XOX Susan
susanwales
Susan,
I understand the shock and disappointment you and your family are going through. I hesitate to mention this...but here goes. We all do have a choice in this, and sometimes one has to think quality over quantity of life. That is something that I learned after my first oncologist wanted me to be on chemo forever. I took a break. Yes, I am dealing with recurrence...but I had 4 blissful years of being me and living my life. OvCa is not something that one is ever free of. You are given the NED rather than a clean bill of health. No Evidence of Disease is quite different than being "cancer free." I realize that you love your mother very much. The Doctor is doing what he/she does best. But in the end, enjoying life, no matter how short, seems more appealing. Hope this doesn't sound too non-supportive. hugs to your mother and your family
lindamae
lindamae
Dear Linda Mae:
Thank you for this prospective. We actually discussed this option yesterday. The younger doctor told Mother they were not going to force her to take the additional chemo, but then her oncologist reminded her that he asked her to give him a commitment for one year when he agreed to take her as a patient, which she did. He's so incredibly busy, he oftentimes cannot take new patients, so he wanted to be sure if he took Mother that she would take someone's place who would commit. My sister and i discussed with her refusing the treatment, but she wanted to keep her one year commitment to the doctor. However, she told him that after these treatments and her year was up that she was finished.
When Mother was initially diagnosed with OVCA, we had to beg her to do the chemo. She responded that had lived a wonderful life, and our father having died a couple of months before, she said, "I believe this is my time." However, we lost my father tragically, and the grandchildren and great-grandchildren were having such a difficult time coping that our family begged her to try it for a year. When you have cancer at her advanced age, it is a different situation. SO we're coping Mother would be absolutely fine with it if she didn't have to be away from home. That's very difficult for her. And thank you for having the courage to mention this! Patients sometimes need permission from others to confirm they do in fact have options. And I truly believe that Mother will assert herself after these nine treatments and her commitment of a year has ended.
susanwales
Gee, Susan, something about this doesn't sound right to me. Your mother has stage 1. Her chances for a longer life span are already very high at that stage. Giving an older person so much chemo is toxic and dangerous.
If this chemo was a sure-all, then wouldn't ALL of us who have a clear CT scan and normal CA 125 after our last chemo be told to continue more treatments anyway?
The protocol for ovarian cancer, first line therapy, is 6 treatments. If those don't do the trick, usually a patient is then switched to another chemo drug and continues the fight.
This seems like far too much chemo and will make your mother ill...what of her blood counts, too?
I feel something is wrong with this decision the doctor is making. If I were you I'd get a second opinion.
I am sorry if I've instilled doubt. If it were me I would raise lots of questions about this.
Hugs,
MaryAnn
LibraryLady5
Ok.. I'm coming clean too.. I was stage one nine years ago and was in remission for seven years. after 6x carboplatin.. this is not unusual for stage I OC.. the most any doctor in the UK would suggest was a couple of extra doses for good measure in such a situation. There is something a bit menacing to my mind when this doctor will not agree to your mother having this treatment closer to home. He can not guarantee that your mother will be free for a moment longer than she wll be if she does what he asks.. It all sounds very strange to quite a few of us here.. please get a second oppinion.. this is too important a decision to be left ot someone who seems to be displaying a personal vested interest in your mothers freedom to chose the course of her treatment.. No one can ask for such a commitment from a patient in advance.. perhaps he would like to give an iron clad guarantee that cancer will never return.. He would be the first ever doctor to be able to do that.. I feel something strange going on here ..xxx
Halli
Hi Susan....what a shock to read this! Im SO sorry but I have to agree with MaryAnn and Inka here, it sounds a bit suspicious.
None of us are Oncologists, obviously but as stated a clear CT and a normal CA125 would kind of make me think putting your mother through more treatment, just for the sake of it, isnt necessary.
Maybe I am completely wrong here but I have been led to believe that cancer grows much slower in older people.
I dont know Susan, only you and your mother can decide what to do....but maybe a little more research is necessary before you commit to more (perhaps needless) chemo.
Many hugs
x
abfab
Susan - I rarely write here, but caught this thread while catching up on Halli. I hate to plant of seeds of doubts, but chemo is brutal on our bodies, spirits, and immune system. What they are recommending doesn't right, and I would go for a second opinion. I was Stage 3 in December 1996, finished 6 cycles of chemo in April 1997, and have not had a recurrence. That's 12 1/2 years. I realize I am pretty lucky, but I have never heard of anyone that's Stage 1 having more than 6 cycles. What brothers me most is that they don't encourage you to go to Emory for a second opinion. All of my doctors at top cancer centers encouraged me to go for second opinions. Maybe your mom does need more chemo, but what her doctors are saying just doesn't ring "true" to me. Your mom is entitled to a second opinion. Actually, as a survivor, lawyer and cancer advocate, I believe everyone should ask for one.
notagaintoo
Another two cents from me. I have heard or read somewhere that your chances for recurrance are less if your CA 125 is in the single digits. So maybe that is what they are waiting for. I would hate to think that they are recommending this just so they can continue to get paid on it.
anitaama
Hello Susan, I wish the best for your mother. Bad news about the continued chemo but I agree with Anita that her CA 125 is on the high side especially considering the effects of chemo are still taking place in her body. I wonder if the doctors think her numbers will rise if treatment ends now. My CA 125 number at the end of June was 24 and early August it was 75. My July CT was clear and the August one showed disease and I'm back on chemo. You might want to ask the doctors candid questions about why they think it prudent to continue chemo. Best wishes, Janet
IUPUI
Dearest Friends,
My brother, a radiologist, looked at Mother's C.A.T. scan today, and explained that there is a tiny nodule on Mother's lung that has been there since the initial diagnosis, which the oncologist had explained was caused by the fluid build-up in Mother's lungs due to the ascites. The oncologist assured us that the nodule was not a tumor or the beginnings of one.
My brother and the oncologist both mentioned that this nodule appears to have enlarged somewhat since Mother's initial C.A.T. scan, but both assured us it was caused by the fluid in her lungs, which there is a small amount there, which is a normal side effect of congestion that the chemo causes. Both reiterated no cause for worry or concern.
However, my brother believes that this enlargement coupled with the fact that her CA-125 is at 27, and not in the single digits as Anita and Janet pointed out, is the reason the oncologist wants Mother to complete 9 more cycles of chemo. Anytime anything changes in size, even if they suspect that it is not caused by the cancer and the fluid, they will still take precautions.
My sister, my mother and i were so shocked at the oncologist's decision to extend Mother's chemo that we didn't ask the questions that we should have asked.
I should also clarify that Mother's oncologist did not forbid us to get a second opinion. He said he would NOT allow Mother to get her treatment in Emory's clinic, near her home, away from his supervision. He said perhaps he would consider it for maintenance, but not the next 9 chemo treatments.
He also promised her he would reevaluate after three treatments and another C.A.T. scan and CA 125, so perhaps Mother will not have to endure the entire 9 treatments. But she is in a better place today after hearing my brother's evaluation, and is willing to do the 9.
I'm elaborating on this process in hopes it will help someone else who may go through this process. And I thank you all for your comments, suggestions and opinions, because it has helped us reach a place of peace! Thank you! Thank you, dear friends!
Love,
XOX
Susan Wales
susanwales
I am still confused.. Ascites on the lungs 'a normal side effect of chemo' never heard that one before.. Ascites is fluid which builds up around cancer cells.. this is what I am being treated for right now.. Just keep on asking questions till it all makes sense.. I know you will make the right decision.. but this is all a bit strange still and I would want an independent second opinion before agreeing to put your mother through this. the general concensus, these days is not to go overboard on the chemo.. that people survive on less chemo for as long as those that have more.. but with a better quality of life in between.. Chemo is more often delayed these days and is still effective when commenced.. Tough decisions here.. but I know you will get it right.. huge love and hugs..xxxxx
Halli
Thanks Inka, Good point. Mother's doctor said he will reevaluate after three chemo treatments, so we have decided that we will wait until then and get another opinion if necessary.
Yes, we know the ascites on the lungs are a normal side affect, and he told us hers was a little better than most. Plus she has no trouble whatsoever with it . . . no coughing, etc. The oncologist has also cut the strength of the chemo this round. Since he promised he would evaluate Mother after the third treatment, we have decided to go ahead since we have my brother's opinion weighing in and the oncologist at his clinic, so we will likely wait until after the reevaluation to seek a solid third opinion. Thanks for your thoughts.
When will you come home from the hospital? Praying for you!
Love and Hugs!
XOX
Susan Wales
susanwales