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Bone scan results

11 REPLIES 11
carolsav
Member

Re: Bone scan results

It is normal to worry about everything! I even look at docs facial expressions or go over conversations in my mind and read into things that arent really there.
Its gd u have company. Im not brave enough togo alone.
My calendar is full of appts lol. Please dont worry that they have brought your appt forward...the nhs works in mysterious ways!
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Twoandabump
Member

Re: Bone scan results

My mum comes with me to appointments, but stays in the waiting room with my childminder children and son, so I don't take too much time off work, if I took a day off with each appointment I have, I'd sack myself lol!
Just had to call them up, concerning a mammogram appointment they sent..I was pretty certain they couldn't do a mammogram of two expanders lol!
My ct date is through..Tuesday 25th November and I've just had another letter through, cancelling my 11th dec appointment with surgeon and bringing it forward to 5th December. Very confusing and hard to keep on top of. Also worrying that they've brought my appointment forward 😞
I'm still concerned it is something more sinister, but I guess that is normal!

Cookie17
Member

Re: Bone scan results

I am with Carol in what she says.  You certainly have had more than your fare share of things.  Does anyone go with you when you have your appointments?  I am lucky to have my husband come with me and it is great having him with me as support and also to ask anything I may forget about.  Do keep us informed how things go as I will be worried about you.  I am lucky with Oncology at Roya Berkshire as their attitude is totally different to what you have experienced. 

Cookie

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carolsav
Member

Re: Bone scan results

No wonder u are upset about the way you have been treated. There is nothing wrong in asking for a second opinion or changing doctors etc. I am happy that your pain has been explained to you as nothing sinister. Its normal to get worried about any aches or pains in our circumstances and you def did the rite thing in getting it checked out.
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Twoandabump
Member

Re: Bone scan results

Hi cookie17

I've not had any pain relief, and to be honest no longer need it. My rib still hurts, but nowhere near as bad as it was, and I carried on childminding and carrying and lifting etc when it was at it's worst. It really was excruciating back then though!

I haven't seen my scan, as she called with the results, but will ask to see it, when I'm next in. I've had a ct scan before, when I completed chemo and rads in 2012. I'd be interested in seeing and reading my report, but have never asked to see my medical notes before. I'm being treated in Milton Keynes. I'm 43 years old now (just turned), and would have thought they would bring up other bone issues with me, the fact they haven't, makes me think they're holding info back from me. Do you think my gp may be privy to this info, I trust her far more than the breast care nurses at the hospital. To be honest I've lost faith in the bc nurses in Milton Keynes. After my recon, the nurse and surgeon made me feel really pathetic for complaining about the fat necrosis pain I was getting under my skin, that when my rib went, I didn't dare mention it, until I saw a different surgeon, this was literally 6 months later! I hate the fact that I don't trust them anymore, but sadly that's the case. My expander op was 8 months ago and I still have them in place, no sign of implants, also they continued to fill one side more than the other, so for the last 8 months I've had ridiculously different sized boobs, which was unnecessary. I actually think my surgeon dislikes me, because I complained about my op being cancelled to his secretary. My reason for complaint is down to the fact I'm a childminder..finding temporary homes for 6 children is very hard on kids and parents, also my partner booked time off work and my dad flew over from America to help out! Only to get a call 5pm the night before my op! I missed out on a weeks work and pay, then had to book it all again the following month (without my dad for help with my 2 yr old), needless to say, after op, my entire family came down with a sick bug one after another, I was driving my daughter to school and steam cleaning carpets within days of op, so probably damaged my rib doing all that, plus I went camping in April and was putting up tents and sleeping on the hardest bed possible, which hurt like hell! Anyway all by the by now! My surgeon probably thinks I'm one of life's moaners, despite the fact that I'm really not! I just felt I'd let so many people down, due to the cancellation.

I guess I'll ask at my next appointment about actually seeing my records and some explanation about everything. If I felt they were being honest with me, I'd be more inclined to believe them lol!

Cookie17
Member

Re: Bone scan results

I am so pleased to hear that the smudge was due from the recon op.  Did you get to see your scan?  I am sure it would help alleviate your fears. I know with mine they did say that due to my age, I would have areas in my knees for example that would show dark due to wear and tear. Do you mind my asking you where you go for treatment?

 

As to CT scans, I have CT scans all the time, they are nothing for you to worry about.  It is only a safety precaution to ensure all lis okay. You are naturally worried, that is to be expected but nothing to worry about. Did they give you anything for the pain?  If you are not happy with what you are being told, can you seek a second opinion? Dont be afraid to push for answers if you are not happy with what they are saying if it would help you. You are not parnoid.  I was in my early days and thanks to my husband, he always brought me back to earth and to see reason however much I may have hated him for it at the time, but he was right and made me see sense.

 

I will keep everything crossed for you.

 

 

Twoandabump
Member

Re: Bone scan results

She called me with results yesterday. Apparently I have a "smudge" on my rib where it hurts. They think it was an injury from my recon op, but want to send me for a ct scan, because of my history and age. She seemed to think the rest of me was ok, which I find extremely hard to believe, due to joint problems for well over 10 years, I would have thought they would have mentioned at least some wear and tear. Am I again being paranoid? I get the feeling they're not giving me the whole truth. Not sure. Anyhow, I do feel better than I did yesterday!

Cookie17
Member

Re: Bone scan results

The pain you described, I had last year and again this year.  It was excruiating in every way and taking extra morphine was the only way I could control it.  On seeing my oncologist I told them about the pain, and after a poke and prod of my back in the chest area, they recommended a bone scan and this I had. This was the first time for me as I had never had one before so like you was anxious and fearful of the results.

 

I dont understand why they are telling you the results are not in. For me they said it would be up to a week for them to be analysed and sent up to my Oncologist.  For me, I found the scan frightening and I found upsetting to.  I knew I had bone cancer but not to the extent it was showing on the scan. Having gotten over the shock of seeing all the black areas which was were where the bone cancer was, I saw in my chest area some dark areas and they matched where the pain I had been experiencing was. 

 

You are only normal to worry, we all do. I have not meant to scare you in any way but what I have mentioned above.  You should ask to see a copy of your scan. It will be an image front and back. Royal Berkshire are brilliant with allowing me to ask questions and insist on seeing either on the computer or a paper image of things that they have taken of me.  I like to understand what is going on inside.  But that is me.  I bet I have made things worse and it was not meant to be. If there is cancer there, you can be treated for it. They do a radiotherapy form of treatment not as strong as actual radiotherapy and it will help ease the pain. It did for me and can be done again a few times if needs be. Please forgive me if this has upset you in any way.

 

 

 

carolsav
Member

Re: Bone scan results

Glad you only have to wait one more day. Think your idea of wine and an early nitw sounds like a gd plan! .
Remember we are all here if you need us xxx
Twoandabump
Member

Re: Bone scan results

Thanks carolsav. I only need to wait one more day, so I suppose I can attempt to suppress that horrible "elephant sitting on my chest" feeling. The last time I had this feeling I was called back for further pictures of my good boob, after a mammogram. I turned around and saw my picture and saw three clear white spots 😞 I said that the picture didn't look good and the radiographer agreed. I had a horrible half hour wait in the waiting room, totally thinking I would have to go through this all again! Only to be told that I was cancer free...phew! I opted for a mx of good side and although they don't normally do that, they agreed.
The trouble is, I have bad joints and have already been told that my neck shows degradation of a 50-60 year old (I was 40 then) after an MRI. Would cancer be picked up on an MRI in my bones? Because I was told I was ok back then, but they only did my neck, because of weakness in arms after chemo.
Going to have a couple of glasses of wine and get an early night lol!

carolsav
Member

Re: Bone scan results

Hi. You are not being paranoid but i think the bcn was simply trying to say that you have done the rite rhing by looking into the problem and that the best way forward is to see the onc again. Please dont jump to conclusions yet as there are many different possibilities for the pain. Of course you are scared and worried. That is only natural. But please just hang on in there and see what they have to say to you first. I know this is such a hard time for you but you will get through it.
Good luck with the results ans please let us know how you are xxx
Twoandabump
Member

Bone scan results

I was diagnosed with primary bc in oct 2011, have had expanders put in place after a skin sparing mx of my good side in feb 2014, not long after possibly the first expansion, I was coughing and experienced really bad rib pain, like a torn muscle. This persisted for months, I couldn't cough or sneeze it was excruciating! However, after a visit with the gp, who said it was muscular, the pain finally eased. It has never gone away, but is now only a distant pain in comparison to where I was a few months ago.
My breast surgeon asked about pain on my last visit and I finally mentioned it to her, she has sent me for a bone scan. The long and the short of it, is that I called the bcc unit for results and the bcc nurse asked me where the pain was? And if this was the only place I had pain? She told me the results weren't in, and asked if I had seen an oncologist recently, I said no, as I've been released from onc, she said ok, I'll get you in touch with one, so you're on the right pathway. She promised I would get results Wednesday (tomorrow) after they have their weekly meeting.

Am I being super paranoid or what? Since when did I need to be put on onc's pathway, if I can get negative results from the surgeon who referred me, beginning to think that the results are positive and she knows what they are and is delaying until their weekly results meeting . Am I being paranoid???