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Post by iamkristinl16 on Oct 22, 2015 12:54:35 GMT
I posted about a month ago that my mom was diagnosed with stage 2 lung cancer. She just turned 64 yesterday and is otherwise healthy. She is a non-smoker. She had surgery last month and the cancer was removed.
The oncologists that she met with locally said that there really are no good chemo options for her type of cancer. The "lighter" one would make very little difference in the chance that the cancer would come back. The other chemo protocol is apparently extremely rough. They told her that most people don't finish the course because the side effects are so severe. One doctor told her that if she did it, she would not be the same person anymore. Most people have verve damage and lots of pain, loss of mobility, etc that doesn't go away.
Yesterday she had an appt at Mayo Clinic for a second opinion. The dr there said that she is young and healthy enough that he would consider doing the chemo. Without treatment, the odds of the cancer coming back are 50/50. With the chemo, the odds would be 45/55.
I know that it is her choice to make but I have been thinking about what I would do in that situation and was curious what others would do.
Update 11/4--Late last week my mom found out that Mayo had tested her tumor to see how aggressive it was. I am not sure what the terminology is, but was told that on a scale of 1-4, with 4 being highly aggressive/fast growing, hers was a 3. Obviously, that is not what we expected based on the fact that she has had this spot on her lungs for some time now. So, she had decided that she would do the chemo. Until....yesterday she went for a follow up with the local oncologist. She was planning to tell him that she is doing the chemo, but then he said he had some news for her as well. He said that there is a clinical trial on the ALK inhibitor (currently only used on stage 4 patients, but they are doing a trial on stage 2 and 3). The Pfizer rep came in to the clinic yesterday and the doctor talked to him about it. My mom is not eligible for the trial because of her other chronic health issue, but there are not very many people who have this genetic mutation, so he said that they would be able to get the med for her anyway--for $25 a month. She is scheduled to start chemo next week, but if this comes through like she hopes, she will cancel that and do this instead. So, keep your fingers crossed that the rep wasn't giving info that he shouldn't have, and that it turns out well!
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Deleted
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Post by Deleted on Oct 22, 2015 13:00:35 GMT
what an awful decision for her to make. I lost a friend to lung cancer, it was an awful experience. even with that info I may decide to not do the chemo. seems like a lot of potential damage for a small chance of success.
Im sorry she is faced with this decision
Annette
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Deleted
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Post by Deleted on Oct 22, 2015 13:00:47 GMT
What a tough choice to make, I hope she finds peace with whatever decision she makes. For myself personally, I wouldn't do it. I've always said that chemo is not an option for me under any circumstances.
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marimoose
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Post by marimoose on Oct 22, 2015 13:02:36 GMT
What a difficult decision. It is hard for me to say what I would do without actually being in that situation honestly speaking. It is easy to say what we would or would not do until we are truly facing our own mortality. I can say that I don't believe I would agree to the more extensive/invasive chemo, especially if it was only going to improve my odds by 5% and would significantly alter my life in an otherwise not so positive manner. I am sorry that your family is faced with this and will pray for strength that your Mom can come to a decision that is good for her.
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Post by saralovesducks on Oct 22, 2015 13:06:50 GMT
That's a terrible decision to make. I'm so sorry. Lung cancer sucks. My grandma chose not to do chemo, but this was a bunch of years ago. The mother of a friend just got diagnosed, lung cancer also. She' is in her late 50's, and she chose not to do it either.
It's really impossible to put yourself in someone else's shoes with this kind of thing. Best of luck and hugs.
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Deleted
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Post by Deleted on Oct 22, 2015 13:13:34 GMT
My dh had a similar choice with colon cancer. The oncologist told us his chances of not having a recurrence would improve 8% if he had chemo. He decided it was not worth it. He has not had a recurrence and its been 15 years. Hoping for the best for your mom.
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Post by Spongemom Scrappants on Oct 22, 2015 13:14:08 GMT
You asked what we would do, so I will answer that way. Given that it reputedly only improves my survival odds by 5%, I would not do the chemo.
But as others have already pointed out, it's easier to make that decision without being in the situation.
Everyone approaches these scenarios differently. In the end, your mom's decision may not be the one you would make. Or the decision that seems to be the "winner" in polling here. And that will be okay. Be prepared to support her even if you disagree with her decision.
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melissa
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Post by melissa on Oct 22, 2015 13:23:33 GMT
Here's my question... not being up on the most current medicine with lung cancer...
How was this determined? Was it by statistics or was it by her specific tumor biology. With some other types of cancers, they can send out the tumor and have it tested. The statistics are determined then by the actual biology of the tumor, I do not know if that even exists for lung cancer or if they are simply using the type of lung cancer (small cell, non-small cell, squamous, etc) and staging. The latter is more nebulous.
I am not surprised by the Mayo opinion. She is only 64 and if she is a healthy 64, it is a different story. I would do more research but might consider skipping the chemo altogether.
I had 3 opinions for my own chemotherapy. 2 were obtained at a distance, by phone. I was also in a gray area for chemo use, something that was developing at that time. 5 years before, I would not have been offered chemotherapy for my stage of breast cancer. I was offered it based on age and the general nastiness of the tumor itself (it's biology). I ended up doing it for something like an 10-18% difference in long term survival.
Speaking of survival, the rates they give you are generally in term of short term survival- ie 5 years. I would want to clarify longer term survival rates vs shorter term.
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Deleted
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Post by Deleted on Oct 22, 2015 13:27:08 GMT
That's such an awful thing to face.
Personally, I would not do the rough chemo and risk my quality of life.
Hugs to you and your mom
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Post by pelirroja on Oct 22, 2015 13:27:44 GMT
I'm so sorry your Mom is facing these challenges. I have no advice but I hope that whatever decision is made, your family can find peace and acceptance with her choice.
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MaryMary
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Post by MaryMary on Oct 22, 2015 13:35:37 GMT
I wouldn't do it.
I'm sorry that your mom is sick.
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Post by librarylady on Oct 22, 2015 13:36:35 GMT
I doubt our science for this is so fine tuned that a 5% difference can be said to be true. For 50/50 chance, I MIGHT say no. Of course, if it were a decision for ME, I might say something else entirely different.
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Deleted
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Post by Deleted on Oct 22, 2015 13:42:26 GMT
I hope I'm never in the position to make a choice like that. But if the chance of preventing a recurrence was only improved by 5%, I don't think I'd have the chemo. Easy to say, of course, since it's not my decision to make.
I wish your mother well in her decision and hope for the best outcome possible.
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Post by iamkristinl16 on Oct 22, 2015 13:44:08 GMT
Here's my question... not being up on the most current medicine with lung cancer... How was this determined? Was it by statistics or was it by her specific tumor biology. With some other types of cancers, they can send out the tumor and have it tested. The statistics are determined then by the actual biology of the tumor, I do not know if that even exists for lung cancer or if they are simply using the type of lung cancer (small cell, non-small cell, squamous, etc) and staging. The latter is more nebulous. I am not surprised by the Mayo opinion. She is only 64 and if she is a healthy 64, it is a different story. I would do more research but might consider skipping the chemo altogether. I had 3 opinions for my own chemotherapy. 2 were obtained at a distance, by phone. I was also in a gray area for chemo use, something that was developing at that time. 5 years before, I would not have been offered chemotherapy for my stage of breast cancer. I was offered it based on age and the general nastiness of the tumor itself (it's biology). I ended up doing it for something like an 10-18% difference in long term survival. Speaking of survival, the rates they give you are generally in term of short term survival- ie 5 years. I would want to clarify longer term survival rates vs shorter term. I'm not sure how the percentages were determined. I know that they did test the tumor because there is a medication (I believe it is part of a study at Mayo) that she was hoping to be able to take, but her tumor would need to "match" the genetic mutation that the med targets (that is how it was described to me). Last time I talked to her, she didn't know the results of that test yet, but I assume that she is not eligible for the med since they are talking chemo instead. She has non-small cell cancer. They also said that if it comes back, the life expectancy would be 2-4 years but I am not sure how that was figured out, either. She apparently has had this tumor for about 3-4 years, but it wasn't mentioned until a doctor last fall saw it on a scan and looked back at a scan she had a few years earlier because she was having pain in her armpit. They requested a follow up in 6 months (that turned into 9) and she had two biopsies this summer (both came back as normal lung tissue, but her doctor was persistent and ordered a PET scan). So, they feel that the tumor was slow growing. Of course, if it comes back, it may not be that way next time.
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Post by mikklynn on Oct 22, 2015 14:01:47 GMT
Kristin, First let me say I am sorry.
I would not do chemo. Quality of life is what matters to me. I have had this discussion with DH regarding his cancer.
I would have her push to see if she qualifies for a clinical trial.
Is she close to the U of I? Check with them and Mayo.
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Post by blarneygirl on Oct 22, 2015 14:15:39 GMT
I'm so very sorry your mom is faced with with this question.
I can only answer for me, and not what your mom should choose. My personal decision would be based on at what point in life I was presented with this. If I still had kids to launch into their own lives, I would fight with everything even if the change in results was a small percentage. If my kids were off into their adult lives, I would pass on the treatment.
Having had cancer, and chemo that I was almost unable to complete because of what it did to me it's something I've actually thought about.
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melissa
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Post by melissa on Oct 22, 2015 14:21:59 GMT
That was actually very helpful.
The deal is, in general, that chemotherapy works the best and is the most effective for tumors that are rapidly growing. Chemotherapy works by attacking different mechanisms of cell growth. So, tumors that are slow growing tend to be less chemosensitive. They are also less likely to show up as metastatic disease, spreading to other parts of the body. But that is just a generality. This is stage 2 disease, not stage 1 or 0. Granted, it is not further along either. Such a tough decision. But, if that last test is not back yet, all the information is not in yet. They could still talk about chemo and another medication. Wish I knew more. Would have to read up a little!
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~Susan~
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Post by ~Susan~ on Oct 22, 2015 14:27:53 GMT
I am so sorry that your mother is having to deal with this. Based on what you said about the the 5%, I wouldn't do it.
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Deleted
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Post by Deleted on Oct 22, 2015 14:57:11 GMT
With those odds, I'd skip chemo.
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Post by cindyupnorth on Oct 22, 2015 14:59:54 GMT
I would follow what Mayo is telling her. She is young, and should recover well with her health being so good.
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Post by Darcy Collins on Oct 22, 2015 15:18:32 GMT
Unless the local oncologist is affiliated with a cancer center, I would follow the Mayo clinic's recommendation. We had dramatically different care and options between a local oncologist and one of the leading cancer centers in the country. We were dealing with Stage IV lung cancer. I would also say that everyone reacts differently to chemo. My family member was able to start with some of the gene targeted therapies and was ecstatic to avoid chemo. Eventually he did end up on chemo. Ironically the side effects from the gene targeting therapy were WORSE for him then chemo - which he tolerated very, very well. My best advice is to find a GOOD oncologist who is affiliated with all of the leading research and treatments for her particular cancer.
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Post by scrapmaven on Oct 22, 2015 15:24:36 GMT
I'm sorry that your mom is going through this stuff and my thoughts are w/you both.
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carhoch
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Post by carhoch on Oct 22, 2015 15:26:36 GMT
I would not do it I am big on the quality-of-life versus longevity
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Post by ilikepink on Oct 22, 2015 15:39:15 GMT
What an awful spot to be in. Many, many years ago former FIL underwent chemo for a rather rare cancer (I have no idea now what it was) Did chemo for 2 years, with little affect on the cancer, but was miserable from the side effects. He stopped the chemo, felt great for 2 years - saw his last two grandchildren born - and then passed away. The quality of life for him was key.
If I were to face that decision today, no chemo. But in a year or two from now, or a few years ago, might be a different decision.
Get more information - get all the information you can, and then be as supportive as you can.
Hugs.
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Post by emelle64 on Oct 22, 2015 15:46:41 GMT
I'm very sorry for your mom's diagnosis. I'm not sure what I would do in her shoes because the decision is a hard one.
The only thing that I would add to what has already been sad is that the type of chemo I had last winter for ovarian cancer is notorious for awful side effects. But my doctor told me ahead of time that I might or might not have those awful side effects. I opted to go ahead, on my oncologist's advice, with the thinking that even if I only tolerated one cycle it would be better than no cycles. As it was I tolerated it very, very well with almost no side effects. I sailed through all six cycles with very minimal side effects. Perhaps it's different with the chemo they are suggesting for your mom, but are they 100% sure that she will experience those nasty side effects?
Emelle
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Post by MZF on Oct 22, 2015 15:47:14 GMT
With the info given here, I wouldn't do the chemo.
What a choice to make--I'm sorry your mom has to make this decision.
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Deleted
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Post by Deleted on Oct 22, 2015 15:48:03 GMT
I am so sorry for your family. Any cancer diagnosis sucks. Non-small-cell lung cancer is horrid.
If it were me, I'd probably forgo the chemotherapy and here's why:
My 51 year old brother is fighting stage 4 metastatic non-small-cell squamous cell carcinoma. He was diagnosed in November 2014 and was told he had very little time left. He opted for chemo and radiation, which worked, at first. Now it's continuing to spread and the second round of chemo is incredibly harsh and the side effects are miserable. He's often quite ill now where before this round he was still able to get around and felt pretty good most days.
He's now in the process of making the decision to keep going. I think he's going to opt for quality over quantity and stop treatment. I support his decisions 100%.
Just be there for her with whatever she decides. ((((((hugs)))))
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Post by compwalla on Oct 22, 2015 15:52:13 GMT
My cancer is very aggressive and fast growing. If there was any effective chemo option for me, I'd take it. But slow growing stage II with only 5% improved outcome? I'd skip it.
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TXMary
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Post by TXMary on Oct 22, 2015 15:57:04 GMT
That is such a hard call to make. Knowledge is power. Research, research, research and make an educated and informed decision. Go beyond what all the doctors are telling you and talk with real life people who have been through it.
For myself, I would probably do the chemo. I was diagnosed with breast cancer in 2009 and did chemo. I really didn't have much choice based on my tumor. But every treatment decision I made was with the thought that I never wanted to look back and wish I had made a different decision. I chose to do everything I could to increase my odds, even if some of the choices only increased them by a marginal amount. It was my decision and I am comfortable with it. I have some long-term side effects that I will live with for the rest of my life. And no, I'm not the same person I was. I have changed. My health has changed. But I feel like I made the right decision for me. My DH was diagnosed with testicular cancer in March of this year. He also made treatment decisions like I did. Everybody is different and every cancer/tumor is different. My only advice is get all the information you can about her particular tumor and research, research, research and talk to people who have been through it. Knowledge is power.
My best wishes to her whatever she decides.
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Post by lucyg on Oct 22, 2015 16:13:43 GMT
iamkristinl16 and @peasville, I'm sorry for your family situations. What a tough choice to make, I hope she finds peace with whatever decision she makes. For myself personally, I wouldn't do it. I've always said that chemo is not an option for me under any circumstances. Why would you make such a blanket statement with no knowledge of an actual medical situation? I spent six months on chemotherapy 18 years ago and most of it was relatively easy. I had a virulent form of breast cancer and two kids still at home who had already lost their father. The chemo has extended my life at least this long so far with no end in sight. My hair grew back, there were no permanent effects, chemo is a dim memory, and damn, I appreciate being alive. If I'd had your attitude, I'd probably be dead now. Why would anyone make such a pronouncement with no information about the specific medical issues, your age, your family situation, the quality of the chemo, how hard (or not) it may be to take, lasting effects, likelihood of knocking out a killer disease ... it just seems foolish.
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