Back in the Waiting Room

I can’t quite believe I’m back in the waiting room again. My diagnosis was March 09. I had chemo, mastectomy, rads and herceptin and treatment finished in December 10. Since then I’ve been busy getting my life back. Took a long time but I felt I was getting there, not thinking of BC every day. I pop back to this site now and again to catch up with the other IBC girls. I’d even begun to think I’d got away with it.

For the last 2 months I’ve been ignoring pain in my left thigh and hip just hoping it would go away. My Mum was very ill and my attention was all on her until after her death a few weeks ago. Now that things have settled down I can’t ignore the pain anymore and it’s getting worse. I went to my GP this week and he did his best to reassure me it’s not likely to be secondary cancer but I’m not convinced. Most of the time my thigh is very tender like a bad bruise (but no bruise to be seen). The pain from my hip is like toothache and runs down the side of my thigh. The pain is much worse when I’m resting than when I walk and keeps me awake at night. Gp has taken blood tests to see what my calcium levels are doing and if there’s any sign of arthritis.

I haven’t been able to bring myself to tell any of my friends or family. No point upsetting them all again if it turns out to be nothing. Does it ever get easier not to panic over every little pain???

Jan x

hi jan… as much as we try… we just cant quite put the breast cancer away and forget it can we… any ache and pain we get… and woooooosh… we back in the fear mode… try not to jump to conclusions. like your GP said… it could quite easily be nothing sinister… xx angie

Thanks Angie.

Been trying to distract myself, watching old films on tv and taking the GPs advice to rest the leg. Death on the Nile and You only live twice so far today. OH is out walking the dog which is usually my job on Saturdays while he watches footie. Told him I have a pulled muscle which hopefully will turn out to be the truth anyway.

Jan x

Dear Jan, First of all I am sorry to read about the death of your Mum. My Mum is very poorly too and is in a nursing home. She has a chest infection yet again and I do worry about her and my Dad who is coping at home on his own.
I don’t know if you have read about my recent problems but I am going into hospital on Monday to have an operation to put a pin in my hip and one in my femur. I have been having ongoing problems for months and months. I had pain in my leg and my leg kept giving way and I was scared that I would fall and break my hip/leg.
I know you have pain too but that does not mean that you have what I have. But I do understand the worry it causes and how you feel. You could ask to be referred to an Orthopaedic Surgeon just to check things out, or if you have a Pain Speciallist in your hospital he may be able to juggle your pain meds. I got patches to put on my thigh overnight which helped but they do take a week to kick in. If you have Sciatica the drug Amitriptylene given at night helped me. if you need any more info please get back to me. But make it soon as I will be in hosp from Monday! Much love to you Jan from Val

Hi Val,

I have seen some of your recent posts and I really feel for you. It’s very hard watching loved ones suffer illness and not be able to fix it, and on top of your own ill health too. I hope your Mum improves soon so you can concentrate on your own recovery.

My pain is very mild compared to what you’re going through. If I’m honest, it’s ending up in your position that worries me much more than the pain. I deperately want to rule out secondaries as the cause. I think my GP will refer me back to my oncology team if the blood tests turn up anything unusual. We’ve ruled out sciatica as the pain is in the wrong place but there is a big muscle runs from the hip down the side of the thigh to the knee. GP thinks if the blood results are normal that’s the most likely cause. It just doesn’t feel like a pulled muscle though.

Good luck with your op on Monday. I’ll be thinking of you.

Love Jan xx

Will be thinking about you too Jan. Hope you get the pain relief sorted and some answers soon. I didn’t mean to imply that you had secondaries, god forbid, but just wanted to say I could understand your worry and wanting to get answers. Hugs Val

Jan what you are talking about is the IT band and when i was mountain biking racing i use to get it quite regular.That muscle band that runs right down the side of the leg also supports the off to the knee and foot. It feels sometimes like you need a hip replacement, in fact thats what i thought it was when i first got it. The pain is so bad you cant lay on that side in bed at night. You can easily solve it if it is that by getting a really good sports massage on it, but first of course rule out everything else and good luck.

Hi Jan sorry to hear of your latest worry - I know with every ache and pain the fear comes back of what it could be. You have done the right thing and gone to your docs and a blood test will show any abnormalalities, fingers crossed that its just a pain in your thigh muscle - I know you have ruled out sciatica, but that can be very painful and go on for a while and is constant - if you have a trapped nerve I think the pain can be anywhere? - I know when I had sciatica I had pain in my ankle and foot - as well as lower back pain! thinking of you and hears hoping for good results. take care xx

Thanks Ladies,

It’s a real tonic talking to other people who know what it’s like.

Hatty, I think the IT band is what my GP was talking about. It does feel very like you describe. Thanks for the tip about massage.

cheers

Janet xx

That band is a s*d if it tightens up and the massage is quite painful to release it. You can do it a little yourself by warming the muscle up and then running your thumb down it. If it feels sore and in a funny way the pain feels like relief then you can bet its the IT band. Always best to get it checked out though. pm me if you want any more info.

Hi,

Sorry it’s taken me so long to come back. My laptop was stuffed for a few weeks. Fixed now.

Blood results came back normal. Problem is the pain is still there and massage hasn’t helped. I can’t shift the niggle that all is not well.

Hatty, is there any way to be sure it’s the IT band? Would a physio be able to tell?

Jan xx

Jan, when I had night hip pain a few months after completion of treatemnt, I phoned my BCNs instead of my GP, as the oncologist had told me to do. Bone scan arranged within a week, 3 weeks for result which showed arthritis but no secondaries. Big relief, even though i still have hip pain at times.
Would suggest you contact your breast care nurses or if you do not have direct access ask for re referral, you can’t deal with this without getting more definitive invetigations.
Hugs and hope you get sorted soon
Lavender
xx

Hi Jan,

I have waited until I returned home today from seeing a specialist practitioner about the pain in my thigh before responding to your post.

I thought it was my hip and the pain was being referred to my thigh and running down to my knee. I even thought about the IT band but I am not very athletic so that was not likely.

The pain is worse on my thigh on a level with my groin. If I press I can follow the line of pain down to my Knee.

Good news. It turned out to be a bursar, a sac of fluid, actually on both thighs and I nearly shot through the roof when the practitioner pressed in a certain place. I had a steroid injections on both sides and am now waiting for some relief.

Is your GP the sort of person you could ask if your problem might be a bursar? Might be worth a go.

Good luck,

E

Thanks everyone for all the responses.

I’ve given it more time just to be sure it wasn’t all in my imagination. Went back to GP and he referred me to an orthopaedic clinic. Had an appointment last week, surprisingly quick!

The nurse specialist at the clinic pushed on various bits of my skeleton and thinks the origin of the pain is in my pelvis rather than my leg. She arranged an x-ray of my pelvis which didn’t show anything obvious (which is encouraging). Now waiting for the Consultant to arrange either a bone scan or MRI depending on the results of new set of blood tests.

Hoping I won’t have long to wait as I just can’t sleep. Things always seem so much worse lying awake in the middle of the night.

Jan x

Hi Jan, I had my operation on 5th September to insert pins into my femur and I am doing well. Would it be possible for your to see an Orthopaedic surgeon who specialises in patients who also have cancer? I am not saying that your problem is the same as mine but I found his experience in this field to be really helpful and he has sorted out my problem of pain in my thigh etc. I am walking without crutches or walking stick now and back to driving the car. The difference is much better than I thought it would be. Even my meds are back to what they were before the pain began.
When the doctor did my operation he told me that he may damage my bone when inserting the pin inside my bone. This in fact happened but he told me if I had fallen before the op I could have smashed my bone in hip and thigh. It was just as well they did the op when they did. I saw him last week and he is very pleased with my improvement but he did tell me I have to be patient as I do technically still have a broken femur! I am as usual trying to run before I can walk.
If I can give you any support or answer any questions please just ask. I am here for you. Please let us know how the scans go. Keep well Jan, Val

Val, great to hear that your pain has improved after the op! Hope to see you and your bionic leg soon,Love n hugs Dot xxx

Seems ages since we last met Dot. Hope you are keeping well yourself and say Hello to lulu when you see here again. I see you were meeting up. Hugs, Val

Lunch on Saturday in Hamiltons ,would be lovely if you could pop in xxx

Hi Val & Dotchas,

Thanks for the advice Val and I’m glad your op went well. I hope you recover quickly and get back on the move.

At the moment I don’t even know who the Consultant is. I’ve had no paperwork, everything was arranged by phone and I can’t remember the name of the woman I saw at the hospital. I am hoping the Consultant will have experience of working with cancer patients. I know they do treat patients with bone secondaries at the local hospital. If I don’t hear anything by Monday I’ll give my BCN a call. I should probably have contacted her earlier but the staff have changed and I don’t know who the new one is.

Have a good weekend. Jan x

Hi Jan, let us know how you get on. If you want to ask any questions let me know. You know I am always here for you. Love Val

Hi Dot, Don’t think I will be able to make it tomorrow but thanks for letting me know as I a never sure what dates the meet ups are now. Say Hi to all. Love Val