Fear of bone cancer

Lynne Logan

Hi all,
Been a while since I was here. Chemo knocked me on my butt so I wasn't able to finish. I was so miserable with fatigue, shortness of breath and hurting all over I didn't even post here. My PET scan did come back clean though so for this I'm thankful.
I was de-ported on January 10th and what should have been a joyous occasion turned very bad. I just knew I was a goner when I got an air embolism. When I was able to close my eyes I saw black and red alternating, breathing was impossible and I was paralyzed! The ambulance arrived and got me to the hospital and when they got my blood pressure to something over 43 let my daughter in with me. She said I was puffy, with blue face and gray lips. Charming. But, after a few hours I was able to walk out under my own power and the next day went in for my radiation simulation. Under the circumstances I was given a choice to postpone but I want this over.
I just came home from my 14th of 33 rads and so far so good. Except for a little fatigue. More of a sleepy fatigue than the stare at the wall chemo fatigue.
Now for my current "problem" and question. I know once cancer (especially breast) has been discovered we all must live with the chance of mets. My fear is the bone pain I was experiencing even before breast cancer was discovered and the fact that I still have it 3 months after my last infusion. Of course it got much worse during chemo but I thought by now it would be gone. Only one spot of neuropathy remains on my right foot, my breathing is normal and I don't have that "run over by a semi" feeling, so I've seen progress. But the bone pain (lower arms and legs) is still very much there and has me worried. Naturally these are places not covered by the PET scan.
Anyone else experiencing chemo related bone pain 3 months after treatment? It would be reassuring to know it will subside in time.
Hope everyone else is doing well. Our weather here in CA is terrible. I want some winter since we see enough blue sky the rest of the year. Since I'm feeling pretty good, I have to gripe about something, right?
Lynne

CypressCynthia

Hope this helps
What is sometimes so very difficult about having breast cancer is the fear that every pain may be metastasis. Many pains are related to age and arthritis or other issues, but it is so hard to figure out!

I have bone metastasis (ribs) and all I can do is share my own experience and maybe thgat will help. I began to have rib pain in 2005. At first, it was an on again, off again pain. If it makes you feel better, my PET scans, CT scans, bone scans, markers, etc. were all suspicious but inconclusive. Finally, in 2009, a trip to the ER with very bad rib pain and, finally, another bone scan in which the radiologist made the call and said, "this is bone metastasis." My markers were finally elevated in 2009 also.

It took a bone biopsy to confirm it.

I would say in retrospect my warning signs were
1) Unexplained bone pain and fractures
2) Persistent pain (although I would have months without pain which I have read is common) and progressively worsening pain. I often described the pain to my spouse as feeling like there was an alien in my chest trying to push out (pressure and pain)
3) Overall health deterioration. From 2005-2009 I had my first 3 episodes of pneumonia and, although I am not overweight and have no risk factors, I had a small heart attack.

Just so you know, I am doing well with the bone mets--much less bone pain and I am able to continue to work.

Also, I had an excruciatingly painful back condition starting in about 2006 that turned out to be a weird condition that was easily fixed by surgery in 2009 and had nothing to do with cancer.

It is so hard to tell. Be vigilant and persistent, but don't let the worry wreck your life. :-)

SIROD

Dear Lynne,

You have been through a lot and hope soon life will be all good. From what I read, bone metastasis in lower arms, lower legs and feet are extremely rare. It can happen but, usually there is metastasis in the bones elsewhere. Mostly I have read, women who have it in there feet will state "they have bone mets from head to toe". It is very rare.

You might ask for a bone scan, if it shows up in the lower arms, lower legs or feet, have 3d imaging x-rays. This might ease your mind. Bone scans do pick up osteoarthritis and make them light up.

Hoping you have some reassurance.

Best for the remainder of your radiation treatments.

Doris

Penny67

Wow!
Hi Lynne,

I finished my chemo on December 14, took month off and started radiation on January 16 (14 more). I will tell you that after the last chemo, I expected to bounce back and feel like my old self again before I started radiation as with each chemo I physically like myself just in time to start the next round. Unfortunately, after the last chemo, I was left feeling like I was run over by a truck-my bones ached, my joints were stiff and my muscles were tight. I had injured my lower back(was sitting and the chair slipped out from under me and I crashed my tailbone into a hard floor) and was in excruciating pain. I had been going to pt after my mastectomy for movement in my arms and she also worked on my lower back area. It was getting better to where I wasn't thinking about the pain to back to feeling it again in my lower pelvis/tailbone area. Even though I had a bone scan, ct, PET scan after my diagnosis in August and all was clear, I still can't believe that I can feel this stiff and achy with the constant pain and my mind does go to the "What if it's in my bones?". I tell myself that I am being paranoid, but I can't help worrying.

I am so sorry you went through such a horrible and scary experience with your port removal. I still have mine in and was going to get it out when I have reconstruction sometime in May. I was told it was a simple in office procedure, but I know that everything has the potential to be serious.


Hope your radiation treatments continue to go well and you avoid the radiation burns. I am very fair skinned and look like I have a bad sunburn under my arm and across my chest. It is very sore and itchy, not to mention doing a number on my expander by constricting and making it feel rock hard and tight. I am hoping I won't have a disastrous reconstruction with the radiated skin and muscle tissue.

Penny

Lynne Logan

Penny67 said:

Wow!
Hi Lynne,

I finished my chemo on December 14, took month off and started radiation on January 16 (14 more). I will tell you that after the last chemo, I expected to bounce back and feel like my old self again before I started radiation as with each chemo I physically like myself just in time to start the next round. Unfortunately, after the last chemo, I was left feeling like I was run over by a truck-my bones ached, my joints were stiff and my muscles were tight. I had injured my lower back(was sitting and the chair slipped out from under me and I crashed my tailbone into a hard floor) and was in excruciating pain. I had been going to pt after my mastectomy for movement in my arms and she also worked on my lower back area. It was getting better to where I wasn't thinking about the pain to back to feeling it again in my lower pelvis/tailbone area. Even though I had a bone scan, ct, PET scan after my diagnosis in August and all was clear, I still can't believe that I can feel this stiff and achy with the constant pain and my mind does go to the "What if it's in my bones?". I tell myself that I am being paranoid, but I can't help worrying.

I am so sorry you went through such a horrible and scary experience with your port removal. I still have mine in and was going to get it out when I have reconstruction sometime in May. I was told it was a simple in office procedure, but I know that everything has the potential to be serious.


Hope your radiation treatments continue to go well and you avoid the radiation burns. I am very fair skinned and look like I have a bad sunburn under my arm and across my chest. It is very sore and itchy, not to mention doing a number on my expander by constricting and making it feel rock hard and tight. I am hoping I won't have a disastrous reconstruction with the radiated skin and muscle tissue.

Penny

Wow
Hi Penny,
Amazing how you described exactly how I felt during the last of my chemo. My oncologist took a look at all the skin peeling off my hands, my pus filled finger nails, and my 90 year old body movements and said, "You're a little sensitive to this medication." Ya think??? He reduced the dosage of Taxotere for the 5th infusion but with the addition of the breathing problems decided a PET scan instead of the finally infusion would work.
Like you, that being run over by a truck feeling lingers but my muscles aren't so sore even if I do still stiffen up if I'm inactive for a while. As for the bone pain, it sounds like we're both thinking alike. I hesitate to tell you this bit a lady who I see in the waiting room prior to my radiation has gone from breast cancer to bone cancer (and she pointed to her legs as having received rads) and now is in her head. So, paranoid or not I think both of us should stay on this. My oncologist seems to feel that I no longer need pain medication but I continue to take Lortabs anyway, until they run out. If the pain is still there, I'm going to insist on a bone scan.
19 more rads for me (I started 1/23) and TGIF!! So far, so good with the burns and I'm sorry radiation has been so hard on you. Are you using "Special Care Cream"? The hospital I go to gives it put freely and even has me slathering it on my back.
Good luck with your reconstruction. I think your skin will be ok with time, from what I've been told.
Lynne

Lynne Logan

SIROD said:

Dear Lynne,

You have been through a lot and hope soon life will be all good. From what I read, bone metastasis in lower arms, lower legs and feet are extremely rare. It can happen but, usually there is metastasis in the bones elsewhere. Mostly I have read, women who have it in there feet will state "they have bone mets from head to toe". It is very rare.

You might ask for a bone scan, if it shows up in the lower arms, lower legs or feet, have 3d imaging x-rays. This might ease your mind. Bone scans do pick up osteoarthritis and make them light up.

Hoping you have some reassurance.

Best for the remainder of your radiation treatments.

Doris

Hi Doris,
I've been concerned over this pain since the day I was diagnosed and then when a lady going through radiation said that her breast cancer had spread and she'd received radiation on her legs naturally my nagging fear went into over drive. My first PET scan showed a suspicious spot on my spine but it's gone now.
I go back to see my main oncologist in March and if I'm still having this bone pain will ask for a scan. It's not right to have bone pain in my shins and arms. At least without a satisfactory explanation.
Thanks for letting me know that this kind of bone cancer is rare. Although I've been on a roller coaster of good test results to I've got bad news. Sometimes you feel like if it can happen, it'll happen to me, huh?
Thanks for the encouragement. Only 19 more treatments to go. ;-}
Lynne

Lynne Logan

CypressCynthia said:

Hope this helps
What is sometimes so very difficult about having breast cancer is the fear that every pain may be metastasis. Many pains are related to age and arthritis or other issues, but it is so hard to figure out!

I have bone metastasis (ribs) and all I can do is share my own experience and maybe thgat will help. I began to have rib pain in 2005. At first, it was an on again, off again pain. If it makes you feel better, my PET scans, CT scans, bone scans, markers, etc. were all suspicious but inconclusive. Finally, in 2009, a trip to the ER with very bad rib pain and, finally, another bone scan in which the radiologist made the call and said, "this is bone metastasis." My markers were finally elevated in 2009 also.

It took a bone biopsy to confirm it.

I would say in retrospect my warning signs were
1) Unexplained bone pain and fractures
2) Persistent pain (although I would have months without pain which I have read is common) and progressively worsening pain. I often described the pain to my spouse as feeling like there was an alien in my chest trying to push out (pressure and pain)
3) Overall health deterioration. From 2005-2009 I had my first 3 episodes of pneumonia and, although I am not overweight and have no risk factors, I had a small heart attack.

Just so you know, I am doing well with the bone mets--much less bone pain and I am able to continue to work.

Also, I had an excruciatingly painful back condition starting in about 2006 that turned out to be a weird condition that was easily fixed by surgery in 2009 and had nothing to do with cancer.

It is so hard to tell. Be vigilant and persistent, but don't let the worry wreck your life. :-)

Hope this Helps
Hi,
Man, you have been through a lot but have a good attitude and strong body evidently. You're so right about being vigilant as proven in your case. I think we must be careful for exactly the reasons you mentioned. We know when something isn't right but we also have to weed out the normal aches and pains from ones that need attention.
You've been a good help and I will take your advice. Everyone who responded made me feel like I could trust myself and know what to do, if it became necessary.
Continued success and I'll not worry. The pains will just nag at me a little. ;-}
Lynne