hubby scared and wants me to get another opinion

judyr

hubby scared and wants me to get another opinion

judyr

ok ladies, I am very unsure of what to do here and I know you all can give me perspective.

First, I have been complaining to my wonderful husband about all my aches and pains, sometimes significant ones. I tend not to complain to anyone else except to you on the boards at times.

I am thinking that my pain is just SE of zoladex, tamox and previous chemo. I have been taking two alleve at night to sleep because my right hip hurts sometimes the left as well. I did tell my onc. this at the last visit mid Oct. and due to shoulder pain in early sept. I had a clear bone scan.

SO, my dear hubby was talking with a coworker last week and they got to talking about the coworkers wife that has bc as well. This really scared him because she had hip pain for a year, they kept telling her it was arthritis and SE and it ended up being mets. So his coworker gave him the name and # of the Doctor and encouraged him to have me get a second opinion as well as call his wife.

I don't know why but this has really thrown me into a funk. I cried in bed after he fell asleep last night and I'm "low " today.

I also have a little bead sized lump in my breast where the lumpectomy scar is but deep. (The Doc is going to check this in Jan when I see her next) I've also been having headaches off and on and my GP is worried about my blood pressure (Never had That before).

Ugh! I'm tired of being a patient, I'm tired of worrying about my health. Iwant to be done with it. From previous experience, (Neg bone scan) I am just ready to accept a little pain and move on.....

What do you think?

Thank you all!

Judy

badboob67

Hi Judy,

Men are funny animals: they hear our complaints and their urge is to fix the problem whereas our girlfriends would offer sympathy and support which is what we're usually after! I'm sure your husband is really very worried--probably moreso than he'll let YOU know--and is pushing you to see another doctor because he wants to be SURE that everything's ok.

ZOLADEX and the loss of estrogen in general most definitely can cause joint problems and pain. I am wondering if you are on a calcium supplement or something like ZOMETA, too. Estrogen loss can promote bone loss.

If you had a clean bone scan so recently, it would be very unlikely that your pain would be due to mets. Bone scans are pretty good at identifying mets.

Maybe it would help to just visit the recommended doctor once--with your husband along. Your husband would have the opportunity to ask questions and will feel better about what he is "doing" to help you. I understand that you don't want to feel like a professional patient...boy, do I ever!  You might actually learn more about how your husband is feeling by listening to questions he asks the doctor. It's fortunate for your husband that he knows someone who understands what he's going through from the husband's perspective.

((((HUGS))))

Diane 

Member_of_the_Club

You are the one living in your body so you should get this checked out for yourself. You are in pain and you should find out why. I think your husband is right. Most likely it is arthritis, but once you know that you can treat it more effectively.

judyr

That's it Diane, (and thank you for the response) he wants to fix it. He is such a great guy, he wants to get a new mattress to see if that will help wich I am all for.

It's the going to another doctor. I really struggle to keep myself balanced and not worrying, and not thinking about cancer. I was just getting to the point where I could "move on" and he tells me about his friends wife. It brings up all the deepest feelings of fear. I know you all know what I mean.

Judy

roseg

Sharing with other people doesn't always make things better!

It sounds to me like your Oncologist is pretty good about following up on your issues. You had shoulder pain, and a bone scan. You have some other issues and she's going to check them in January -- that's not far off.

If your Onc had blown off your shoulder pain and didn't seem concerned by these other things then I'd see someone else. Second opinions almost always generate more testing, and that is stressful in it's own, not to mention expensive.

The clear bone scan is pretty hard to ignore, and as you say the follow-on treatments you have, plus chemo before, leave people with aches and pains.  

It's wonderful that your husband wants to pull out all the stops to your complaints. But it seems like your care has been appropriate. Has he told his co-worker about your clean scan? If he spends 8 hours a day with him then probably this worry keeps coming up between the two of them, and doesn't fade for your husband.  

judyr

Hi Rose,

Yeah, I'm happy with my Doc and I think she knows me well enough now and is doing as you said, the appropriate things.

I told my husband today that I wasn't going. He seemed surprised. I just told him I couldn't do another doc right now.

I think part of it is he is just realizing what it would mean if it came back. She went through alot the second time around. I don't think he see's this coworker all that often it's the first time they talked about me or his wife. I'm not sure if he told him about the bone scan. I think he was impressed with how much his coworker knew about his wifes condition and what she takes, ect. He doesn't follow all that as closely.  

do you think taking alleve each night is ok? My GP  didn't seem worried about it.

Well thank you all for your responses, they were all helpful and I think that just typing it out helped me see what to do. I'll have to set aside some time to talk with my dear hubby a little more and explain why.

God bless each of you,

Judy

chemo072

as someone with chronic pain, I've been taught not to tough it out, and not to let it go, because for me once it starts, the pain "volume dial" gets turned up and then the littlest thing can hurt way out of proportion.  But that's me. 

though, given the clear bone scan, not sure what else can be done?  tamoxifen made me achy as all get out, and so did chemo and zoladex.  

and a new mattress sounds wonderful.

your husband is just being a good friend (i personally would have suggested the same thing, to get it taken care of and not live with it), but I completely understand not wanting to see another dr.  

hope the pain resolves on its own! 

LuAnnH

what about bone density?  have you had a dexa scan to check for oseteoporosis?  I know my left hip is thinning and I have been experiencing pain from it.  I know that is what it has to be because I just had my scans and there are no mets to be found in my hips.

Stopping estrogen causes us such aches and pains, it is enough to make you crazy!  Try sleeping with a heating pad, when my hip hurts alot I lay the heating pad on it and it feels wonderful!

judyr

LuAnn, would that be different from the bone scan? i'm fairly big boned so I'm not sure i'm at risk for osteoporosis. The bone scan did show degenerative areas (AKA arthritis?) in several places but I don't think the hip was one of them.

LuAnn, does your hip hurt constantly or off and on? Mine hurts off and on during the day, but not bad, then more at night when I'm sleeping on my side. Some nights are worse than others (ugh!)and some nights not much at all.

AmyaM, I know what you mean about little things feeling worse when you have that constant pain going on.

The thing is I really think that they don't really have anything else to offer for the discomfort other than things like alleve ect. that and more testing to see if the pain is from mets.

I just hate being a complainer, I hate the thought of going in and complaining of something, then they test you and your neg. so they kind think less of any other complaints that you have. But, I also hate the thought of chronic pain for the next 4 years.

Blessings,

Judy

LuAnnH

Judy,

My hip hurts mostly at night, especially when I sleep on my side.

As for the scan, the Dexa & Bone are different.  The bone scan uses radiation to look for uptake in the bones which might be cancer, arthritic or degenerative problems.  A dexa scan is given to women as they become menopausal to see if their bones are thinning.  As we lose estrogen it really affects our bones.  They become very prone to breaking.  It is worth checking out, the scan takes all of about 15 minutes.

Don't worry about being a complainer, this disease is scary!  I was floored when a doctor told me that mine returned.  I must have been a strange person that just didn't worry about it and figured it would never visit me again.  I was very wrong and surprised.  My only advice is don't live your life in fear of this disease.  Live your life the way you want to, we only get one time around and we all are going to die.  Some of natural causes, some of terrible tradgies and some of illness.  If you sit around waiting to die you waste the time you have to live.  (just do me a favor and remind me of those words some day when I am freaking out)

With your clean scan I would really bet you are experiencing arthritis and aging.

iodine

a couple of suggestions, besides all the great ones above

Try a heavy duty mattress pad, the thick foam ones, not the egg shell type they use for elderly people.

Also, I sleep with a firm little round pillow between my knees when I sleep on my side and it helps keep my hips level and decreases the stress on my hips.  Both of mine hurt before I stopped tamox and began a swimming program.

JoelKM

It sounds like your husband has not been that involved with your treatment up until this point. If he hasn't done much research he won't really understand the decisions your team of physicians is making.  That lack of knowlege leads to rumors and fear and that's not a good place to be making decisions from.

celia088

But it sounds like the doctor you are being encouraged to call was the doctor who kept thinking that woman's situation was arthritis rather than mets. I would not want to go to that doc for a second opinion.  I would rather pick another doctor who is tops in his field for a second opinion, if i had any doubts about my dx.  I also would not care to call the co-worker's wife regarding her dx or her doctor.  JMO.

judyr

I'm only 41 and definately premenapausal, (9month old baby to prove it!) so I'm not sure that I would have thinning bones yet. However I don't think it's mets either.

I think your right Iodine, I will get that new mattress with a nice thick pad and a pillow for between my legs. Swimming sounds like a good idea too. Did it help?

I really wish I could forget and go on so easily. For me, looking forward and positive is a concsious decision that I have to do over and over again. It makes more sense to me, to forget, to move on and enjoy life but interiorly I struggle and think frequently of what could happen. And yes, LuAnn, I will remind you of that if you need it!

Joel, My husband is an my rock. I could not have made it through treatment without him and that is the honest truth. But, he does not always remember when I have had an appointment or keep up with my meds. I really think that he is where LuAnn was in his ability to move on and think that we are done with that chapter in our lives. I think, that is why he was scared after he talked with his coworker friend. I think he realized. And I do think you are right about lack of knowledge leading to fear and poor descisions. I think he expects that I will be making the decsisions. When I told him I wa not going to go to another Doc. he was ok with that and I had to explain what the bone scan was and what that ment. Not sure if I want him to be more informed though.....Mabey where he's at is a good thing for us both.

either way your wife is a very lucky lady. Thank you for the male perspective on this and other threads as well.

Blessings

iodine

Judy, I began swimming exercise program in a heated pool with a trainer.  It helped to learn strengthening exercises I could do in the pool with little or no joint pressure.  I began it to build up my quads in expectation of a knee replacement surgery.  I had major joint problems and could't walk stairs except one step at a time.

I even had to have someone close my car door for me, I was in that much pain.

After 2-3 months, I no longer had knee, or any other joint pain and was swimming laps for 30 minutes, strengthing for 30 min. and then streaching for about 10 min.  Oh, and I just use the back stroke, I never learned how to breathe with the crawl.  Goggles are a must to keep the cholorine out of your eyes.

I still work out 3xwk and know it has made a huge difference in my quality of life.  You must give yourself time to build up muscles and flexability tho.

I never believed the work out message till I did the pool stuff.  It didn't hurt and the water's resistance to your movement is almost as good as using weights and such.

Heck, even my neck doesn't hurt anymore.  And I have loved the reshaping of my body (still a big gal, but I move better) and loosing 25 lbs with little effort.

I was always a perm gal, but I even gave those up cause I swim and it's too much trouble to do my hair all the time.

BlindedByScience

Hi, Judy

Unless you've been cleared by a dexa scan, I wouldn't rule out bone loss at 41. Many, many people don't get enough Vitamin D which is essential for building and maintaining bone. Even men are turning up with detectable bone loss in middle age.

Just another thing to consider. 

NarberthMom

I want to second what Dotti (Iodine) said about the pillow between the knees. Although I'm not on tamoxifen or AIs, I was experiencing a lot of hip and joint pain. I'm a bit older than you (49), but had no problems with pain or athritis prior to chemo. Last night I finally remembered that my hips had hurt during my pregnancy, especially when I was sleeping on my side, and that a pillow between my knees really helped. So, after one night of a pillow between my knees, I finally woke up without pain!

judyr

I think the swimming sounds great. We have a family membership to the Y that I was using till my shoulder started hurting so bad. I gave it up thinking it was the wieght machines. Simming is an option though. 

Blinded by science, thank you for the information on the Dexa scan, I think I'm going to bring that up at my next appointment.

Narberth mom, Yes I think i'm going out and getting a pillow. Thanks for the encouragement.

This is such a help. When I started this thread I was very confused, upset, and you all help me gain the perspective to make a good descision and help my Dear Hubby understand.

Many Blessings to each of you,

Judy

badboob67

Judy,

Since you belong to the Y, you might want to see if they offer the arthritis foundation swim exercise program. My rads onc told me it would be perfect for me even with my extensive bone mets. If you are the kind of person who is encouraged by having a structured setting, it might work for you.

(((HUGS)))
Diane

LuAnnH

my Y offers a water aerobic program for arthritis patients.  All activities are designed to aid in your aching joints.

judyr

I will look through my Y booklet. I really need to do something. I did the pillow thing and that helped. We have had little time to look for a mattress so that will have to wait. i also stopped the alleve the last week and now everything hurts, but my blood pressure is better. i think I need to try tylenol arthritis. Mabey if I swim I won't need anything!

My 15 year old broke his arm badly on wed. Lots of pain. We were at the hospital all day today with him to put pins in. Poor guy, I felt so bad for him!

 Blessings,

Judy

LuAnnH

Oh Judy, that sounds terrible.  I hope he heals quickly.  I would much rather be in pain than my children.

iodine

Judy, so sorry about your kiddo.  I know it's tough on Mom, but the kids seem to get over it better than we do.

As far as the mattress thing: suggest you ck out just a pad first before investing in a new mattress.  Also, when I was looking for new mattress, I found a few sites on the net to be very helpful.

You can also ck out several different hotels who have special mattresses in all their hotels---you could spend the night and ck. out their mattresses.

glad the pillow helped.  Also, you can ck with your doc about some prescription meds that are very helpful and don't cause stomach upset or blood pressure problems. 

judyr

Hi, My kiddo is doing so much better! I agree, having pain yourself is so much easier than watching your kids in pain.

We went ahead and bought a new mattress. Ours was 18 years old and my hubby is now counting down the hours till it arrives (Thurs). I have yet to check out the y. Swimming I think will help, but the whole getting wet thing is hard.......doing the hair, cold, changing in the locker room. I am going to do it though!

I stopped alleve a week ago and I'm ready to get something to replace it! I see my primary Doc next week. I've been checking BP and it is high, so I imagine I will be getting something for that too.

Ugh! don't want to see any more medicine and health care professionals! I'm sure you all have the same sentiments. I shouldn't complain, I am very blessed. I am NED!!!! I have the best Hubby who takes wonderful care of me and I have companions on the journey, you all lovely ladies.

God bless you

Judy

LuAnnH

Judy, another thought when you mentioned meds.  Not sure if you are on any anti depressants, but if you are maybe you should try cymbalta.  It is an antidepressant but also helps ease muscular pains, so you would kill two birds with one stone.  Tramadol is a non narcotic pain reliever that helps with pain so maybe that could be an option to help also.