To continue with chemo or not

Hello, concerneddaughter,

You are obviously very caring, and your mother is lucky to have you. Unfortunately, when we get diagnosed with cancer we enter a reality that no one can really understand except us. For each person it's different. Therefore, you cannot tell your mother that "reducing the risk of metastasis even by a little is worth going through the hell of chemo." That is a value judgement that you don't really have the right to make for her, you see. It might make perfect sense for you if you were in her shoes. But this is her and her reality.

Nor does anyone here have the "right" to tell you whether chemo or no is a better option. Truthfully, none of us can say what your mother's individual body will experience. The chemo could save her. It could kill her. It might make no difference. No one owns the truth.

It is very hard, but I urge you to simply comfort her and tell her that you will support her in whatever she decides. It is hard enough to have cancer; having to have discussions and potential arguments with family members over treatment only makes things worse for the patient. Sometimes, the real test of love is knowing when to stand back.

Godspeed, and this must be very hard for you.

Hi concerneddaughter,

I saw your post yesterday and started to respond, then decided to wait to talk to my husband.  I have a few different perspectives to share, but I wanted to get his feedback as well.

My diagnosis wasn't completely the same.  I was stage II, but small tumors, aggressive cancer and positive nodes.  I did AC and Taxol.  I was hospitalized twice during chemo with low white count and infections.  AC is rough.  Any chemo is rough.  All of our experiences are individual but we can draw on the strength from one another and the things that are common.  I also have a father who has stage IV bladder and prostate cancer.  He is now undergoing his second type of chemo. 

I have twin toddlers and am 39.  I can tell you that without a doubt, if not for them and I had a recurrence, I would not do chemo again.  But because of my babies, there would not even be a choice.  I will fight to the very end.  Now that feeling may change should I have a recurrence when they're older.  I felt very strongly when I read your post yesterday that I wanted to respond and tell you that it is your mother's decision, chemo sucks, and you need to support whatever she decides.  And while I do still believe this, after dicussing with my husband, I've come to understand that it is not that simple.  He told me very matter of factly last night that if I had chosen not to do or quit chemo at stage II, he would have been mad as hell at me.  He said it would have been a selfish decision.  But he knows the journey I've been on and continue on.  He knows the pain, the complete and total loss of control, the weakness and vulnerability.  And he acknowledges that he (or me) did not have any clue about this prior to my diagnosis.  But even given what we know now, he still would have been mad as hell.

I remember my first chemo very well.  The feeling of these toxic chemicals being put into your body is unimagineable.  Each of us deals with it in our own way, but I don't think anyone would tell you it was easy.  Yes, all of the stats say do the treatment.  But even so, every individual is different and every cancer is different.  And how we respond to treatment, physically and emotionally, is different.

My father continues his treatment but has told me that there will come a point where he will not want to fight anymore.  I have the "luxury" of having been on the same side of cancer and do not question his feelings or decisions.  But he is stage IV.  Of course, I would want him to fight.  I want him to live long enough to give lasting memories to his grandchildren.  And I do not want to be in a world without him (I lost my mother when I was 12 and do not want to go through that kind of pain again).  But these feelings, I know, are in a way selfish as well. 

So to summarize, I completely agree with Athena - every person has their own individual feelings about this and we, as family and caregivers, just don't get to make those decisions for them.  But as Outfield pointed out, you can support your mother in helping her process this information and ensure she has all the information to make the best decision for her.  This stuff is scary.  And the overload of information, yet seemingly lack of reassuring absolute "this treatment will work" kind of facts, makes it so difficult to process.  Layer on to that the fact that your mom has actually had at least one chemo treatment now (so she knows at least how her body reacts initially) and you have a huge load to carry.  We want to know that the hell we are going through will be worth it.  But we have no reassurances. 

I hope I didn't offend you.  I think it is so thoughtful of you to be on these discussion boards and the love you feel for your mom and the support you want to give her is so evident in your message.  And I don't mean to minimize any of what you're feeling.  Even having had cancer myself, I struggle with what to say to my Dad and how to support him.  I do the same as you and I post here and do a lot of lurking - but its a struggle for me.  I read the Stage IV discussion boards because I know that although I had cancer, I can't possibly know what its like for my Dad and yet, there is a part of me that doesn't want to think about Stage IV because I could be there myself tomorrow. 

All of this is so hard and I guess at the end of a lengthy response in which I've probably not said much that is helpful, I can at least say that you are doing exactly what I would be doing in at least your effort to gain perspective.  You're here and asking questions and while we're not all going to be exactly like your mom, maybe something we say resonates and helps you process and helps you support your mom.  And don't underestimate your own need for support.  You are on a journey that many of us cannot understand, although I have a sense given my Dad's condition.  You are legimately frustrated.  Do not carry that weight alone.  You may not feel you can't share all of your thoughts with your mom (or at least that is how I feel with my Dad because how to do you say to someone that you're thinking and trying to prepare for a life without them) - but you should share them with someone. Here, in the caregivers support rooms, a therapist, a friend, whatever works for you.  I cannot emphasize this enough.  Seeking support for yourself does not make you weak.  It will only help you be stronger for your mom. 

@concerneddaughter, I'm a few years older than your mom. You didn't mention in your post whether your mother had an Oncotype test. If the test hasn't been done already, she might want to request it. The results will give her some idea of how great a benefit chemotherapy is likely to have with the specific genetic characteristics of her tumor. If she has a low score, declining chemo may be a perfectly logical thing for her to do, because with low scoring cancers, the risks of chemotherapy do outweigh the benefits.

You have also mentioned only two alternatives: chemo or no chemo. There is a third, which is some other chemotherapy regimen. Your mom might want to ask her oncologist what other alternatives she has for treatment besides the one she has started. When I found out about the possibility of permanent hair loss with taxotere + cytoxan (my oncologist's original recommendation) I asked what the other possibilities would be, and ended up doing a different regimen, which is slightly less effective than TC but doesn't carry the ~3% risk of permanent baldness that taxotere does.

Last, you also mentioned that your mom is depressed. Has she talked about this with her oncologist and/or primary physician? It might be that a support group, counselor or antidepressant medication, or all three, would help her get through chemo, if she decides to continue this aspect of her treatment.

I also think a support group, therapist, anti-depressants would help her a lot (no matter what treatment decisions she makes). Also, before she throws in the towel on chemo; there are some things that she could try that might help her get through chemo easier. First, make sure to take the anti-nausea medications exactly as prescribed, and if they aren't working, tell the medical team RIGHT AWAY (this is no time to tough things out). Second, there are complimentary things; like acupuncture, meditation, massage etc. that help many people. Third, getting some light exercise can actually help you physically (and for sure, mentally). Fourth, programs like The American Cancer Societies 'Look Good, Feel Better', gives very helpful, practical tips on how to deal looking good during treatment.