I haven’t posted on here for a very long time but I am in a mess at the moment. I had tubular breast cancer diagnosed in June 2013. It was stage 1 but I had 5 separate tumours (tubular usually only involves one tumour) so I had a mastectomy followed by 3 weeks of radiotherapy. After that I was discharged. I went through all the appointments to get TRAM flap reconstruction and my surgery was booked for this Wednesday. On Friday I met with the plastic surgeon for what I thought was going to be just a pre-op discussion and he told me that he cannot do the surgery at present. I was devastated, I know it sounds shallow but I was so looking forward to getting this last stage in my journey completed so I could put it all behind me. I was so upset at the cancellation of the surgery I didn’t really take in the reasons behind it initially. He explained to me that the pre-op scans had shown some kind of lesion on my pelvic bone and asked me if I had any pain there. I told him that there was no pain and he then arranged for a breast care nurse to come to see me. I must point out that my plastic surgeon is based in a different hospital/NHS trust/county from my normal hospital so I had never met the BCN before. She was very nice and explained that the multi disciplinary team would discuss the scans and decide on further diagnostic options on Tuesday. I can only assume that they think this is bone mets but I don’t know. I now am sitting with so many unanswered questions; what tests will they do? Where will they do them? How long does this process take? Will I need treatment? Is it terminal? Is there a chance that there is nothing wrong and I can just have my recon done? I really don’t want to worry my kids and family so am trying to stay positive but I am in pieces
Hi, I’m sorry to hear about your worrying situation. I don’t know all the answers but just to say that it is possible for benign bone lesions to be reported on a scan as well as mets. I have bone mets in my spine and ribs, but was recently told that I also had some benign lesions in my pelvis (which were only said to be benign after the scan images were reviewed). It’s good that your team are checking this out and I hope you get answers very soon. Maybe give your BCN or the BCC helpline a call in the morning if it would help to talk to a non family member? Best wishes, Tournesol.
Hi there, it’s the waiting and not knowing which is so stressful isn’t it, I hope you get some answers back from the team who are treating you on Tuesday so you know exactly what you are dealing with soon. I expect if they do suspect you have bone mets you will have a full body bone scan. Some here have had biopsies but normally a scan will suffice. One lesion on it’s own could be something quite innocent. If you do need to visit here again please do, we are a supportive and friendly bunch but fingers crossed for you. X
I think all of us on this forum know exactly what you are feeling right now so you have come to the right place for support. We also understand how worrying it is and how you don’t want to discuss your fears with family and friends, again I think we all know the burden they sometimes have to bear. As the other ladies have said it could be that the lesion that has been picked up, presumably on a CT scan, is a benign lesion and not linked to BC. However you are likely to have a bone scan, if you have not already had one, which should determine whether it is benign or not. This involves a radioactive dye being injected into your arm and, after a wait for this to be ‘taken up’ by any suspect areas, a scan of the whole skeleton is done and reviewed.
I have to say that I was in a similar position 7 years ago, awaiting a mastectomy for a local recurrence when a CT and subsequent bone scan showed that I had bone mets. I know this won’t help you to know about this but I have had an active and pain free fairly normal life since then and although I have had various treatments not all have been that intrusive and have not impacted what I do. At the time of my diagnosis I felt my world would end right then and there which of course it hasn’t done. There is a thread in the ‘Living with secondary Breast Cancer’ part of this forum which is called ‘Bone mets-please join in’ which shows just how many ladies are living with bone mets and who all know what it’s like. Although you may not want, or need, to read any of the posts right now it is an area of support, knowledge and some very daft laughs that we all tend to join in with.
I wish you luck for your next appointment and please come back here to let us know how you get on, fingers crossed it is good news but, if not, we are here to help you.
Hi,Mrs C,huge hugs coming your way.
so sorry you have this worry. As the lovely ladies have said we all understand what your going through.
CT scans can show arthritis as a lesion. You need a bone scan,so ask for one if you are not already going to have one.
We all wish you all the luck in the world,huge hugs ,Helen xxxxxx
Sorry I don’t know much about bone mets… But I do have rheumatoid arthritis… This does show up on both my ct scans and bone scans as lesions… I have had arthritis since I was 36 nearly 10 years now and as its progressive it is obvious to the radiographer what it is, the damage caused and gets reported as arthritis activity…
Waiting is the hardest part, I’m just about to start waiting game again after finding some swollen lymph nodes…
I hope your lesion turns out to be benign… Thinking of you…
Thanks for the support. Unfortunately after sitting by the phone all afternoon I have to report that I am still none the wiser. No phone call received so I still don’t know what is happening. Nikki
Sorry to hear that - sounds really stressful. I hope that you can get some answers today. I don’t know if the medics appreciate how hard the uncertainty is.
I eventually received a phone call yesterday afternoon but it didn’t really help much. I am being referred back to my normal hospital because they have all of my history notes and details. Once they receive the referral they will book me in for a bone scan. Hopefully this won’t take too long but I am really impatient and worried so it will feel like forever
Still waiting. My hospital has received the referral but decided that I need to be discussed by the MDT before they decide what tests etc to do so the wait continues. N
Finally got a phone call from the breast care nurse today. Apparently I now have been referred for an MRI so it’s more waiting for me. I have really been affected by this and am really tearful all the time. I know I should stay positive but I just want to know what is going on now so that I can get on with things. Nik
Brief update- I have now received the appointment letter for the MRI and it is on the 20th
May. I know this is only 11 days away but I was rather upset that it wasn’t sooner. I telephoned the hospital to ask why it was taking so long and was told that it was the earliest that they were able to fit me in. The appointments lady said that as it was an urgent referral they had to do it within 3weeks of the referral and they received this on 30th April. I suppose that it is just within the 3 weeks deadline but only just and it will be 5 weeks since I was told that there could be a problem. This waiting is really frustrating now. I can’t even console myself with the fact that they don’t seem to be that concerned with rushing things because it has been classed as urgent which only accentuates my worrying. Nik
Finally it is scan day today. Here’s hoping that it is all clear and that I don’t have to wait too long for the results
All the best for today… Hope the results come quickly and that they are all clear…
Will be thinking of you today…
So. I had the CT scan and MRI on Wednesday. It took forever for the MRI (90 minutes but it felt like hours). Afterwards the health care assistant told me that the results should be ready in 2-3 days. This was yet another disappointment as I had hoped to get some answers before the long weekend. I phoned my breast care nurse this morning in the vague hope that they had the results and was told that they needed further clarification which would be done at the next MDT meeting so I shouldn’t expect to hear anything before next Thursday afternoon at the earliest. I am really getting depressed by the constant delays. It is already well over a month since I was first told that there might be a problem and I am still none the wiser. Nik
I really do feel for you…the waiting room is the worst place to be… And I have just found myself lin back in it with you…with even more bone scan and ct scans planned.
I can’t give you advive on how to cope with this anxiety… We all have to find our own way thru… I try to keep busy with my kids and have tried those art therapy books which do seem to reduce my panic attack moments when I’m on my own!! Maybe you could get your doc to give you something to get throught this time??
At least you know that your scans are being assessed properly and you will received the best possible treatment for you… Just hang in there for a while longer… U have had the strength and courage to come this far…it is best they are thorough than get it wrong as in my case…
I wish you all the luck in the world with your scan results.
Finally I received the telephone call from the hospital yesterday. It isnt mets and i can now go ahead with the planned reconstruction albeit 3 months later than originally planned. It has been immensly stressful waiting for the results and I have lost countless nights sleep. I am now extremely relieved and can hopefully draw a line under this now. Thanks for the support and I will be thinking of you all who havent been as lucky as me. Nik
I’m really plsd for you… Congratulations… It must have been a horrible, stressful wait… But its behind you now… Hope your reconstruction is brilliant…
Here’s to the future… ???