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I had breast cancer 2013/14; had lumpectomy, 6 months of chemo, 20 days of radiotherapy and have been on Anastrazole ever since but probably due to be discharged fully in June.
I started with excruciating back pain in January, spreading to neck and shoulders and with electric shock pain around the neck. Obviously with lockdown my GP could not refer me anywhere. I live alone and was struggling to do anything; getting in and out of bed was devastating. I couldn't go on but thought the problem was neurological and asked GP to refer me for private MRI which I had on 27th.
Results have shown a tumour and pathological fractures of the spine and some nerve compression. There is no compression of the cord.
I now have an appointment to see consultant on 5 May at a really good oncology centre (Clatterbridge on the Wirral where I was treated last time).
I am terrified this means the end. I have two lovely daughters in their 30s. I don't know what will or can happen in the way of treatment.
Can anyone give me any hope or comfort or am I done.
Hi - I just wanted to say that do not have an answer for you but noticed your post was unanswered which is unusual.
The Secondary Breast Cancer 'group' has a little bit more traffic than the bone one (from my experience) so I would suggest perhaps also putting your question to that group as well.
Sorry I could not be of any help but post unanswered I can help with.
Sorry I don’t have the answers either but there are lots of treatments out there now so fingers crossed they can give you something to help. Sorry you had to fight for a scan too. Well done on getting a scan sorted. I think we’ve all thought the same at some point and I know it’s a horrible place to be but we are here for a chat if you need us!
I can imagine how you are feeling because it feels so different second time round. If you get chance read my profile as my story first & second time are very much the same as yours, I was also going to be fully discharged that year. What I am going to say is DO NOT write yourself off as there are so many treatments to try. When you go to your next appointment take one or both of your daughters so you have 3 listening as sometimes I heard white noise but I often took my friend who works in the medical field who asked the questions and even answered them to me again at home when I felt I could concentrate properly, they may offer you some radiotherapy to help with the pain, this helped me but I didn’t expect the flare up pain I got after and it lasted weeks and often got the better of me, I got Macmillan involved and they were amazing and the nurse I dealt with tweaked my meds and got me back to walking properly within 2 weeks! after that they will offer you oral chemotherapy which isn’t like the one we had before, although I remember feeling not too good after a while of taking them but I think your body has to get used to it, I’ve tried about 3 so far, some I couldn’t tolerate and others didn’t work for me, actually they may offer you some hormone treatment like the anastrazole, I took Tamoxifen for 5 years, then after this diagnosis I was given Letrozole but I couldn’t tolerate the leg pain I got so I stopped and started on chemo so you will have to see. Take support from where you can as your going to need it.
Ask anything else if I’ve missed anything, much love to you Jo xx
Thanks Jo - I have looked at your profile and am so sorry you've had such a hard time. I'm very much in the wait and see phase at the moment. Appointment with breast clinic on Tuesday then barrage of tests for my oncologist to review and the verdict on 13 May. Keep everything crossed for me please and I hope you are keeping well. xx
Im pleased to see your app and oncology app is only a weeks wait, Once you have a plan I think you will feel more in control, I did, I hated the not knowing and my anxiety was awful having never suffered with anxiety I was quite pissed off I had this as well! Like I said before start writing down your questions so you have them all to hand and please don’t go alone, not sure who’s taking/accompanying you to your appointments but take someone. I will be keeping everything crossed for you and I hope you will feel a tad better after.
Much love Jo xx
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