Hi Katy and Debbie
Thanks very much for your informative replies. Its amazing the different systems in different hospitals, I had a 4cm lump and 4 out of 6 positive lymph nodes, further clearance only found another 4 that were clear. 4 was the number which triggered bone scan and lung/liver scan. If Id been at another hospital it looks like I would never have known about my little nodules! I wonder whether this is a difference also between oncs and surgeons in that it was the onc I saw in May after the unchanged lung scan and she was happy to discharge me. It is the surgeon who has ordered this one before reconstruction and maybe it is the surgeon who is getting it followed up although he seemed to suggest that it was the scan department who wanted to check again. I must admit that I am with you in that I dont see the point of going looking for things... it is very stressful. Although your post has made me feel much better Katy, having to keep having the lungs checked just means that I dont feel it's all over for me yet. I have also never smoked and never had bronchitis or other chesty conditions so I cant blame that!
I know that it never is over but at least if nobody is looking for anything you can try and put things behind you. I think what has also annoyed me is how one nodule has turned into two!
As for recon Im having the LD flap. I just dont fancy having my stomach poked at too! I dont know if Im doing the right thing with this really as Im not 100% certain I want it done! Knowing I have to be scanned again also puts me off because I think if I knew my cancer had spread I wouldnt bother putting myself through this operation as well as having to have further treatment... so who knows! Maybe I wont bother! I cant make my mind up but would love to show a bit of cleavage!
Anyway, take care and thanks again,
My PS wouldn't schedule my op until I had scans, my onc was furious and in her words she didn't pander to surgeons, I wasn't presenting with secondaries, my checkups + bloods were always clear, but she had no choice so ordered MRI whole spine (which I was told incl ribs & hips) and liver and chest CT, My bone one was fine but had to be recalled on the liver as something suspicious, had emergency appt for liver MRI (I was frantic with worry) and onc rang me to advise it was just a cyst. Eventually had my tramflap recon December 07 and very pleased with it.
My PS tried to tell me scans were the norm, but I know damn well they are not as even with 8cm tumour + 15/20 node involvement I wasn't scanned on diagnoses + I know other ladies he has operated on and they weren't scanned, my onc told me it was to do with my prognosis as its an expensive op and if I had secs then it had higher chance of failure due to body not being able to recover.
The other ladies who weren't scanned have actually told me I am lucky to have scans, more check ups and piece of mind, I was flabbergasted, did ask them if they wanted to swap prognosis and they too could get extra attention but they declined!!
Glad to hear the results were clear for you and Katy, and can appreciate the fear factor on scans, I just look on it now that if I am feeling good why go looking for it, want to stay away from stage 4 for as long as possible.
Good luck with OP, I was able to wear a lovely dress for my 40th this year and show a bit of cleavage.
I was told at diagnosis that had "spots" on my lungs that they weren't sure was cancer or not.
I was diagnosed Jan 07. I had scans throughout the chemo and was told they would keep an eye on them too. I had mx with reconstruction in July last year and preventitive mx and recon on healthy side in May this year- they scanned me again then and actually said to me when the results were in " we are as sure as we can be that these spots are NOT cancer" . I have heard nothing since and don't think that they intend to scan me again.
It IS a huge worry to be told you have spots on your lungs, however, my GP reminded me that I have suffered from bronchitis and been a smoker in the past and all of these factors can contribute to lung spots. The other thing the onc told me when they originally found them was that he could pull 20 strangers off the street and find some of them with lung spots.
I think they have to monitor us because, realistically they COULD be cancer, however the fact that they remain unchanged is that they are unlikely to be. If they HAD have been cancer then they would have disappeared with the chemo which would have proven they were cancer.
Hope this reassures you- fingers crossed for healthy lungs for the pair of us for some time to come.
thanks Judy and Katy,
I have now had the results of my scans. My bone scan was fine
Shortly after I posted I was also sent an appt for a CT scan liver and lungs. As I said I had a 5mm nodule on my lungs when scanned shortly after diagnosis in May 2007. May of this year I had a repeat CT scan and was told that the nodule was the same and there was absolutely no reason to scan me again so I was free! However, because of the reconstruction I was sent for another one before surgery. I got the results yesterday, the surgeon says the good news is that my 2 nodules, yes 2, I never even knew there were 2, were unchanged from the last scan. I was a bit dumbfounded and didnt question him carefully enough but it seems there were always 2! Only this time I am not being discharged from scanning but am to have a repeat scan in 6 months time to check what my bumps/nodules are doing. Part of me is grateful that I am being so carefully monitored but on the other hand I know scans are expensive and they dont do them for nothing. Do you think I have anything to worry about? Katy, are you scanned regularly?
I was sent for a Bone Scan and CT scan before my elective mx this year and like you- I was completely freaked as well- not sure the reasoning behind it. I also had spots on my lungs which remained unchanged so maybe thats why????? I was convinced they were LOOKING for more cancer and stressed out big time, but all was fine and my surgery went ahead.
Hope this reassures you
I had an LD recon in August, but didn't have any scans prior to it.
(Make sure you research the disadvantages of this op carefully - I thought I had, but I wasn't aware of the possibility of adhesions and scar tissue, which has in effect glued my skin to my ribs, and is very uncomfortable.)
I had an appointment last Monday to discuss reconstruction and have now been put on the waiting list for LD reconstruction.
My surgeon didnt mention anything at the time but Ive now received an appointment for an NM Bone Localised scan. I know this is some kind of bone scan because I had one shortly after my mastectomy and SNB as I had positive lymph nodes. My bone scan at this time was okay. It is normal to be sent for a scan before reconstruction and does anyone know why it is localised and not a whole body one? Perhaps it is something to do with reconstruction?
This has started to stress me out now as Im worried that Im high risk, I was her2 positive and oestrogen positive, have had Herceptin and am now on Tamoxifen. I also had a 5mm lung nodule which when rescanned 6 months later was unchanged and therefore they said was nothing to worry about.
Thanks for any help.