Would you go through cancer treatment a second time?
I recently received the following e-mail from a health & science writer with NYMag.com:
Hi there,I’m a health & science writer with NYMag.com, and I thought I’d reach out to gauge your thoughts on a story I’m thinking of pursuing. (Came across your blog while googling around about this topic today.)It’s loosely inspired by “Good Morning America” anchor Robin Roberts’ new memoir – she says in the book that after going through cancer treatments the first time, she quietly promised herself if she were ever diagnosed again, she wouldn’t pursue treatment. Roberts, of course, actually was in fact diagnosed a second time, and did fight it. But I’m interested in understanding why people who’ve been diagnosed with the disease a second+ time would decide against pursuing treatment.Anyway, would love to hear your thoughts on that. And if you have any ideas of some people or blogs or research you could point me toward that deals with this topic, I’d appreciate that, too.Thanks so much for considering,Melissa
I thought it an interesting question, but as I told her in my response, I can’t think of anyone I know who didn’t pursue treatment after a recurrence. Still, I thought I’d put the question out there to see what your thoughts on this question are. Looking forward to hearing from you.
I think the will to live is key here. Knowing we may be dying and accepting death are two very different things. Most will buy more time even if they know time is limited. However as quite a few of your bloggers have posted, sometimes quality is better than quantity, but what a difficult choice.
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Thanks Tric, I appreciate you taking the time to comment on this. I know from my own personal experience that in the heat of the moment, I too said I will never go through this again, but I think as you say, the majority of us, when faced with a recurrence, would buy some extra time if we could.
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Hi Marie; I chose not to pursue further treatment for my cancer and would be happy to discuss the reasons why if you would like to pass on my email address, or provide me with her contact information.
Julie Evans (email) shadow_77_88@hotmail.com
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I have told my husband that I don’t want to go through it a second time if it comes back. But that may change if it were to happen. Life changes so there is no way to gauge how we will respond to an unknown. Also treatments are changing which can make a difference also.
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I think it is impossible to know what we would or wouldn’t do until we have to make that choice. But I also get why some say “never again.”
We change as we go through life’s experiences, and cancer is certainly a life experience that changes us. I’m not sure any of us, Robin included, should be held to a heat-of-the-moment statement that was likely made under a cloud of complete exhaustion — mental, physical, spiritual and emotional.
Interesting topic, interested to see how this story pans out!
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I’ve said repeatedly that I would NOT get chemo again. Yes, I would have surgery and radiation, but not chemo. It diminished my quality of life to a large extent afterward and it’s been a long, slow journey back. Parts of me will never recover. Chemo also prohibited me from working as much as I needed while being treated, which had permanent adverse effects on my life. I don’t believe my body could withstand chemo again. I think I would employ natural modalities in addition to surgery and/or radiation only, but it’s hard to say what I’d actually do without actually having a recurrence.
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I’d go through it again in a heartbeat. Even though my experience was heinous, horrific, and horrible, I’m alive. I’m grateful for each and every day.
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I agree we never know what we will decide till it happens. Having had two diagnoses I notice I am much more mindful about my treatment and have decided not to have some eg tamoxifen. I recognise though that a further diagnosis may change that decision. But I have certainly chosen quality over quantity but maybe that because I haven’t yet had advanced disease. What more important to me now is not to waste life with regret. Powerful discussion as it really gets to the heart of it all, doesn’t it?
Audrey x
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Thank you all so much for your comments – I do appreciate that you have taken the time to explore this further with me.
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This has actually been a struggle for me. I am getting hormone treatment, and alternative treatment at the moment. I hope it works for a long, long, long time. The other options are too scary to consider at the moment.
Treatment is a relative term, I think, and that is important to remember. When first diagnosed, I had a rather harsh chemo regime they often give younger women. It was terrible, terrible, terrible. Now after the recurrence, taking a different hormone therapy pill doesn’t even feel like “treating” my recurrence because of the harshness of the original chemotherapy.
I don’t know what will happen in the future. I’m scared of a day where chemo may be the only course of action, because it’s not something I ever want to do again. And if I didn’t have my husband, I would seriously think about never ever going there.
Like I said, treatment is relative, not black and white. Perspective change with time, some of the pain of chemo, I image, is forgotten. But just yesterday I found a folder of pictures from that time and they scared me. The whole damn thing is horrible.
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Catherine, as always your perspective adds so much to this discussion. Treatment is relative is a really interesting way to describe things, and yes, I agree with you very much on this. I too had a dreadful experience with chemo – the amount they give younger women is high and it’s tough to tolerate. I hope so much that your current treatment continues to work for a very long time for you. All you can do is take things day by day, and get on with your life – which I know you are doing. Sending you all my love and best wishes, Marie x
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Perhaps we should never say never. My husband says that his poor quality of life is better than no life. We have no idea what we would do next until we face the choice. The will to live is pretty strong. But then again, neither of us have ever had chemo.
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I agree with you Lois – we tend to react to things with a knee-jerk, “no-never” statement, but as you say the will to live is strong.
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I have been diagnosed and treated for breast cancer – just once. I too, have the same feeling about subsequent treatments. While I can’t say for sure what I would actually do if I was diagnosed again, I am clear as to my reasons for reluctance… The treatments themselves can be so damaging that the patient is often left dealing with a litany of debilitating, negative side effects, and subsequent, “more treatable cancers.” With each recurrance comes the possibility of worse and more debilitating effects.
It’s clear that the medical profession does not have the answer, but just options. At some point – as stated by others – quality of days is more important than quantity.
For now, I chose to do everything I possibly can to prevent further medical interventions.
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I agree with Renn’s comments, exactly.
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Another very challenging question, Marie. Between 2008 and 2013, I had 3 occurrences of primary breast cancer which had also spread to the lymph nodes. When I was first diagnosed, I said I didn’t want to have chemo, because I was eligible for Herceptin, and I couldn’t see the point of sending in the crack troops after dropping an atomic bomb. However, the Primary Care Trust wouldn’t pay for my Herceptin treatment without chemo, so the oncologist and I came to a compromise – one cycle of chemo, instead of 6, so that she could tick the box. I also refused radiotherapy. It’s possible, of course, that this was responsible for the recurrences… After the 3rd occurrence, in just one lymph node, I decided to have radiotherapy, to try to zap any last traces. Last month I was diagnosed with secondaries in the spine. Once again, I can have Herceptin (trastuzumab) plus a related drug Perjeta (pertuzumab) – but only if I have taxotere (docetaxyl) chemo. This time they will be administered together – along with a bone strengthening drug (one of the potential side effects of which is osteonecrosis of the jaw!). Originally, I thought “there’s no way I would have chemo”, but I imagine it’s not possible to remove the tumour on my spine through surgery – so if I want to not only live longer, but also continue to have mobility (the tumour is heading in the direction of my spinal chord), then chemo seems to be the best option. I’ve been told it’s not as harsh as for primary cancer, and that most people tolerate it fairly well. At the moment, I don’t want to hear otherwise! Like Catherine, I might think differently if it were not for my husband.
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I guess I would answer that I would “know it when I see it.” Right now, I can’t imagine refusing treatment, but there could come a time (like in my mother’s case when she got advanced lung cancer at 82) that I would refuse treatment and be ready and eager to face hospice. My biggest concerns about hospice would be financial and whether anyone would be there to support me if I couldn’t afford a caregiver. Those are bigger concerns for me than the actual dying process, but I’m a worrier and planner by nature. It’s a great question. xx
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I had to go through cancer treatment twice. I am 59 years old and had my first mammogram at the tender age of 19 because they found a lump. It was benign, but 30 years later I was diagnosed with breast cancer at the age of 49. It was early stage, no lymph node involvement and it was in the same spot as the benign lump. Then almost 10 years later I was diagnosed AGAIN, this time triple negative, stage I with no lymph node involvement. “Six months prior I had my routine mammogram, then breast MRI 6 months later which found the cancer in the opposite breast. Fortunately, it was not a recurrence, but a new primary in the other breast. I elected to have bilateral mastectomies and I had chemotherapy. All this to say-I have been having mammograms since the age of 19 which is unheard of these days. I wonder if all that radiation could have been the culprit…I guess I will never know. But the good news is my medical oncologist says that my prognosis is excellent.
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Sheri thanks for sharing your experience here, and thanks indeed to all of you for generously sharing your thoughts on this topic. It is wonderful that we can discuss things so openly and honestly through the blogosphere.
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