Husband Needs Help
So my wife was diagnosed at age 36, had lumpectomy, 3 years later new cancer same breast and had single mastectomy. That was 26 years ago. Back in those days they didnt do hormone treatment or chemo, as preventive measure. Her caner was small, negative lymph nodes, and no further treatment. She has been cancer free ever since, howe,ver one of her markers has been rising, CA 15-3, first went above the normal range to 33 about 8-9 years ago, and has since bounced around between 32 and 42, up and down, and she sees onco and gets tested every 6 months. Last week, her result was 49. But since other markers, CEA and CA 125 as well as physical exam are normal, and she has no symptoms, MO is not concerned, he still thinks she just tends to run high.
Since WE were blindsided by her diagnosis in 1987, she is deathly afraid of Drs and tests and the only reason she sees the onco is because i make the appointments. If i did not she would never go. She also has never had a stress test, only sees her primary care Dr who she has no relationship with, when she runs out of lipitor refills and he wont give her a new scrip unless she comes in. I also feel he is not thorough enough. She has no relationship with him. I am switching her to my PCP who is a cardiologist and made an appointment for her next month, for a full workup, because her mammogram, which was normal for BC, did show some calcium deposits in the blood vessels, which led him to suggest that she might want to get checked for plaque.
My problem is, (or her problem is) she cant even talk about it. And she is deathly afraid of tests. When i suggested she get retested in 3 months rather than 6, as the doctor suggested, since her CA 15-3 jumped out of her "new normal range" of 32-40, up to 49, she balked. And whenever i try to talk to her and get her to appreciate that right now she hasnt been diagnosed with anything, she gets crazy, she cant discuss it and her comment is, it doesnt matter, knowing that i have to go thru tests for the rest of my life i dont care about anything, anymore, and wont ever enjoy myself again". I bought her flowers today, and said i just want you to know how much i love you, and when you see flowers around the house remember that hopefully, all will be ok, but whatever happens, we go through it together. I said the wrong thing, because it reminded her of everything, and she flipped out on me.
She doesnt take care of herself. Unbeleivably, she smokes (not heavy, but still). She doesnt exercise, is overweight (whcih i only care about from a health standpoint), she doesnt eat right. Nothing i do or say makes an impact.
I am trying to balance between not being an overbearing husband, and protecting her, which is very important to me. Can i get a womans point of view, from you guys who understand first hand what she is going through? I really dont know what to do. Its hard for me to stand by and watch her not be proactive about her health. We are both 65, married 39 years.
Comments
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It sounds like she's depressed and maybe has some post-traumatic stress disorder (PTSD), not uncommon after a serious illness. That would explain why she is morbidly afraid of doctors and testing. It's great that you have been on top of things, as regards her health, but it really is HER responsibility. Unfortunately, she will need to go to a doctor and be honest with them about her feelings in order for them to determine what the problems are and what treatment might be useful. Until she evaluates her health and decides to do something about it, she will not change.
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Wow, ragman. This is hard, for you and for her. I think it is so great that you are trying to understand what is going on for her, asking for other women to weigh in. Does your wife believe in the breast cancer industry way of dealing with cancer? Maybe she doesn't, I know that I haven't got much faith in it myself. It can also be demoralizing to be constantly on the medical treadmill of tests, tests, tests. You can get really sick of it. I know you are worried about her tumor marker numbers going up a bit. She sounds kind of sad, kind of fatalistic. How is she doing in other areas of life? I don't find that antidepressants are good for everyone, but there are things that improve mood. Like exercise. Can you go exercise with her? Do other fun and uplifting stuff. She might care more about her health if you can help her that way. Perhaps see a Naturopath, she might be more comfortable with a nontraditional approach for her care.
Hope this helps.
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Wow, 26 years cancer free. Many, many women on this site are lucky to see 6 months cancer free. No one like to go to doctors and have nasty intrusive tests. However, some tests are necessary for survival. I would say, in my "I'm not a doctor voice" she needs a PET scan. They aren't that bad, well unless you're claustrophobic.
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen.
Latest PET scan one year out shows her to be cancer free but with some "undefined activity," whatever the heck that is.
Prayers and fingers crossed.
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@Macbee04, she won't exercise, period. I go for a 2 -3 mile walk every day, I ask her to join, nope. No interest.
She also has no interest in being educated about this stuff and no real knowledge of current Standard of Care, nor does she want that knowledge. Ostrich syndrome.
You ask how she is doing I other areas of life - she has an uncanny ability to compartmentalized the whole health issue. As long as she has no dr visits or tests scheduled, she seems to not think about it, she can turn it off on a dime. You would never know there were any issues, at a family get together, or when we go to dinner with friends.
As long as I don't bring it up, and as long as I don't schedule tests or appointments, related to any health issue, BC or other, everything is fine.
The obvious answer is to not bring it up. But I have to, I cannot not tell her that she has an appointment, or needs to do blood work.. And I can't just not make appointments for her, because she won't make them herself.
So there you see the entire dilemma. I told her today, I'm trying to balance not being ovbearing, with needing to protect her, because she won't protect herself . She responded to that with silence
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@kayb.....
Thank you so much for your thoughtful heartfelt post, I think it may have hit the heart of the problem and you've made some really sensible suggestions, and some great insight into how she might be thinking. It's what I was looking for, so please don't think you might have offended me, I thank you for your candor.
I am going to read and reread your post a few times and take some of your suggestions about how to react when she makes the negative comments , just let her know I understand and I'm there for her.
I just don't know if I can stop making the appointments because I'm afraid if I don't and she doesn't, things will just fall apart.
But I need to think it thru
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I think you've done an amazing job ragman. If your wife's not interested in accepting or acknowledging your efforts, then step back and let matters run their course. Save your energy for when you have to deal with the fallout from a patient who is her own worst enemy. Preserve your own sanity and stay strong. Best wishes.
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Thanks TT. I am trying my best. I dont know if i have it in me to just step back and let things take their course. I really believe she would never make an appointment if it was left to her. I may try it but after a month or two if nothing is done i would step back in again. I want to avoid the "fallout" if i can, i cant afford to just let her take over, do nothing and watch her get really sick.
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Sue, thanks for your comment.I appreciate your feedback.
you said.. "My independence and assuming responsibility for my decisions means a great deal to me"
The whole problem is that she is not assuming responsibility. She is ignoring it. Its not like i switched her PCP from someone she has a relationship with. She doesnt even know his name, and she only sees him when she needs a scrip and he wont give it over the phone without seeing her. So not sure what else i can do, other than ignore her, let her get no care, and watch her get sick and die. i AINT gonna let that happen, at least to whatever extent i can prevent it..
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Unless someone, the patient or the carer, is following the often complex cancer treatment protocol, the whole process is fraught with danger. Health professionals are busy people and since they are often thinking of the next patient while dealing with you, you soon learn to become your own advocate. At the same time, the patient does have the right to adopt a laissez faire attitude to treatment and let what happens happen. This wouldn't suit me, and sure as hell my partner would vamoose if she saw me showing such a lack of interest in my treatment. Do your best ragman, at least you'll know you tried.
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Ragman,
I feel for you, your wife and the complex relationship that has developed with respect to her medical care. You have been given lots of good perspective by other members. Let me say that both you and your wife each play a role in the dynamic that has developed with respect to her health. Professional counseling might be very useful if you want the dynamic to change, however, she has to want it to change as well. If she doesn't want to change, you have two choices. Keep on going as you have, or let her do what she will. Tough love yes, but she is an adult and, in the end, she has to take responsibility. If not, she has made you totally responsible for her health and that is not a marriage relationship, but more like parent/child. Wishing you the best.
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thanks for the replies.
Exb, interesting point of view and I never really thought of it that way, although I should have. No doubt in my mind she wouldn't go for counseling. I have a feeling that she really wants me to take charge because she's a strong willed woman and if she didn't, She just wouldn't go to the appointments. I could be wrong about that just a guess on my part.
After she gets the visit to the primary care physician out-of-the-way which is the middle of next month the next event, for lack of a better term, is her next oncologist appointment, the one that he suggested should be in six months and I am Wondering whether it should possibly be three or four months.
So what I am thinking is I may at that point just say to her "this is on you you make the appointment I really should think it should be three or four months if you think it should be six go ahead make it or don't". Hopefully, if I don't make it she'll take it upon herself. Although I highly doubt it. An extra couple of months is going to make a difference, and if she doesn't make it I can always go ahead make it myself. I don't want to do that but as I said I have to protect her
As an aside I'm still not sure how urgent it is to make the next visit sooner, considering that the American society for clinical oncologists indicates that this marker should not even be used to detect recurrence due to its lack of reliability
Thanks again for your perspective I really appreciate it
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I think you should trust her to run her own life. I am sure she feels judged. If you really want to help her as claimed then let her make decisions about her health and stay out of it. I would not tolerate this behaviour for long and maybe she is feeling helpless because of the pressure.
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Kayb, thanks for tHe suggestion, I a, going to do that. Or at least try.
Something I haven't mentioned - I too am a cancer patient, or survivor, or whatever term we want to use. I had surgery for Prosttate cancer 16 months ago. So I do have an undstanding of the terror, and I don't think it's too strong a word, that's involved in simply having a blood test.
So I try to empathize. I will try a more understanding, less judge mental approach, I guess my reactions have been somewhat judge mental, although not intentionally so.
It's just so frustrating because it's so illogical.
I have been going for counseling for anxiety, using biofeedback. I wish I could get her to do that. But I wouldn't even dare suggest it
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IMO--Since she is so afraid of exams and tests and since markers are not always reliable (my MO didn't do any on me because she says it's not reliable) and she has no symptoms, I'd just let it go until her check up. At least that is on the books right now? Since this is a life long disease because you have to keep getting checked from time to time even when you feel well, I wouldn't push her with her fears and all. By saying you should go imo you're scaring her more so I'd just listen for anything that sounds symptomatic to respond to and not before. At this point you've done your taking so let it go imo. Maybe she can join a bc support group near you if she doesn't want to post here. Being around women who are in the same boat can help dispell fears. In the recurrence forum there's a thread on tumour markers so maybe you'd like to read that.
She would so benefit from counseling. They can also get her on meds which helps many of us with anxiety issues. But you can't force that either. Seems at this point the more you bring such things up the more she is pushing back. Wish you the best.
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She may be rebelling as a way to assert some control in her life. Her way of telling you to back up?
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Could be Wrenn. I know when I was married and my husband would push me I would kick in my heels for such matters as my own health. But then he'd say "ok" and I'd simmer down for awhile to where I could think and some times I would do what he said, never saying I told you so or that'd have been it. lol Leave it be at the 6 months for a check or she may say forget that as well.
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as I said, I do intend to lay low for a while, try to leave it in her hands, and we'll see what happens.
@Artista, she wouldn't go to a support group. She is very private. But thanks for the suggestio
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The great thing about these support groups is you don't have to say a word. I go to a grief one with my friend who lost her sister and there's one gal in there we don't even know her name. She just comes and listens. So maybe if she knew that she'd go? Or with a girl friend? I go with my friend because no way would she go on her own. I just sit there as a support and say nothing, but it helps.
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ragman - A light bulb kind of went off for me when you said you had surgery for prostate cancer 16 months ago. Going with the PTSD theory, your experience of keeping up with your medical check-ups led to her worst nightmare, another appearance of cancer rearing its ugly head. I am sure she is terrified this will eventually happen to her again since it already recurred once (even if 26 years ago).
Just a thought on the timing of her next blood test and appointment with her MO -- why don't you let the primary care doctor drive that? That way you're both trusting the medical professionals to own the situation. It sounds like you really don't have any evidence-based reason for believing her MO is wrong in not accelerating a re-test of the marker. I know you're scared, too, and for you, more data is more reassurance, and the best chance to catch something as early as possible. I operate the same way. But if you can allow yourself to be "in the moment" with her, enjoying your time with friends and doing things without her having to always think of herself as a person whose cancer may recur at any moment, it would probably be more peaceful for both of you.
She is so fortunate to have such a long-term committed marriage with someone who has her back. I'm hoping her visit with the cardiologist will go well and that she'll like him enough to keep up with those appointments, at least to get her statin prescription! Then if you're able to soft-sell the MO appointment like you've been thinking, even if it is six months out from her last one, maybe you can both enjoy this time. I don't have any idea what you guys like to do, but it might be nice to plan something special for the weekend after the cardiologist appointment. Tell her you both need to relax and celebrate being healthy (hopefully this month's report will say she is) for the time being. Maybe go to a bed and breakfast, a sports event (if that's her thing), a crafts show, a tour of book stores, whatever...
I hope that things work out well in every way in the next few weeks. I'm keeping you in my prayers.
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POE, thanks for your thoughts.
The primary care Dr she is going to see is a new one, first visit for her. I think you are right, there is no evidence based reason to not follow her MOs opinion of seeing him in 6 months. Only emotional ones (on my part, which is wrong). So I'm going to let that go and tell her to make the appointment in 5-6 months. Hopefully this lead to me not making the appointments.
The day after her PCP appointment I need to be out of town on a business tri for 2 days. She won't be on any mood to do much, she'll be waiting for blood test results (lipids, CNBC, etc, not cancer related).
She seems to have gotten back into a less depressed state for now, as I've said she has an uncanny ability to get it all out f her Mnd, as log as I don't bring it up. So I'm going to leave it be for now
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be sure to keep us posted on things ragman, since you have many people here hoping you can reach a satisfactory equilibrium as you and your wife handle the stresses of these medical dramas.
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I will Traveltext. I just posted in a thread i found for husbands, trying to understand the best way to be a husband, not a parent.
There wont be any developments (i hope, unless symptoms develop) until she next sees the MO in 4-6 months.
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I know that each person responds to differrent styles of "caring" in their own way and each of deals with crisis in our own way, but I wish my husband cared for me even one tenth of how much you care for wife.
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