Breast Cancer Now Forum

So have you had more scans after that and have they been with arms down? ... View more

Acupuncture experience was not good.  I was on the first day of Ibrance break so very neutropenic.  First needle went in and I broke down in tears.  It did hurt but I think the crying was from the whole secondary journey. Physio was very understanding and suggested we would leave it for now.my Son is getting married in 2 weeks and I have next Pet early September.  I do not want investigations before wedding- pet is only 6 weeks from now.  I know Letrozole does cause bone pain and to be honest pain is worse when I lie down or when I turn arm towards my back - like frozen shoulder. ... View more

Spoke with Physio today and in addition to muscle strengthening I am starting acupuncture next Thursday. ... View more

Have you tried acupuncture?  My oncologist suggested it and I am enquiring today from my physio. ... View more

Thanks for your reply.  I have been on treatment for 2.5 years and although pain in arm started slowly it has now escalated.  Mornings are the worst.  Did anything show up in your scans? ... View more

1 September scan continues to show remission.  No metabolic activity seen.  Thanking God.  This is my 3rd clear Pet post secondary diagnosis - Dec 2019. ... View more

I totally agree.  I have one mets in my T-9.  I have responded well t9 treatment and plan to live a long life.   I have read of women outliving the 10 year mark.  I encourage you to live in hope.  Live a fulfilled life. ... View more

I also want to thank you for your reassuring word. ... View more

Of course, please do get in touch via email.  Would you like for me to keep you in my prayers?  Also we have a prayer group in our church and I can ask they pray for you too. ... View more

I was diagnosed with stage 1 in March 2015 - no lymph’s involved at the age of 45.  In Dec 2019, 3 months before the 5 year, I was diagnosed with stage 4 - mets to vertebrae T-9.  I am now 51 years old. First of all I am so sorry you are going through this. It was devastating for me, my husband and my children.  The world fell apart.  It took me a good 9 months to accept my diagnosis in the midst of COVID. THERE IS HOPE. Physical and emotional symptoms:I experienced depression, insomnia as a result of the news.  On top of this I have been left with permanent tinnitus due to treatment.  My thick long hair also suffered.  I had a lot of loss/thinning last summer, this stopped aprox 8 months into treatment with normal loss now and volume coming through again. I also experience dryness especially affecting my intimate area causing cystitis.  Treatment has taken me to a permanent state of neutropenia .I thought I would not be able to live/cope with a secondary cancer, however, I did and I am still doing it.  Do not get me wrong, it is not easy.  Some days are harder than others, yesterday was not a good day with regards to thinking.  How far have I come:  Jan 2020 I was given palliative radiotherapy to release spinal stenosis and started on Ibrance, Letrozole in February 2020 with the addition of Denusomab injections every 6 months.  At my 6 month pet scan I was already in complete remission. My last scan March 2021 also showed complete remission.  My next PET will be Sep 2021.  I still work full-time and only a few of my close friends have recently found out I am a stage 4.   What has helped me moving on: God is good all the time.  He has gone before me and stands behind me in case I fall back.  He has provided me with a husband who loves me and is understanding, with a daughter and a son who also support me.  With friends and Church who love me and support me in prayer and care. With a good medical Oncology team who keep a close watch on me every month. I am learning to live a day at the time.  When I fall I lift up my hands and ask almighty God to pick me up.  When I am weak in spirit I raise up my voice and call out to God to help me.  My prayer is that this treatment will continue keeping me in remission ‘forever’ and that I will seen the goodness of God in the land of the living, that I will grow old with my husband, enjoy my children and grandchild and to continue living a purpose filled life. You will need time to digest the news. I remember being told by my breast nurse that I was mourning, I ‘mourned’ the loss of my primary cancer.  I lost my primary, I wanted to keep hold of it - I did not want the ‘secondary’ I hated it! It took me a good 9 months to accept, it might take less for you, but you will get there.  If you know the God I am talking about, the great comforter, hold on to Him.  If you do not and want to know about Him please message me privately.  My hope is in Him and I do not know how I would be giving the next step without Him.       ... View more

I have a single mets in my T-9 diagnosed Dec 2019.  Had radiotherapy and now On Ibrance, Letrozole and six monthly Denusomab.  I have been in this treatment since February 2020.  The first year I out in 6kilos on top of 5kilos over my ideal weight.  I found it hard to lose, however, I am finding that now it is coming off.   I am doing WW and intermittent fasting and have already lost 4 kilos. The only exercise I do I see walking.   If you do no then mind me asking do you still experience heaviness to your back and bearable pain despite treatment? ... View more

Lol. I understand.  For me it is a heaviness.  It feels as if I have had cement laid in my spine ... View more

How about weeks after? ... View more

Was going through past messages and came across yours.  Had my second clean PET early March.  The last few weeks my back has been sore and of course this starts my brain working overtime.  I find I get this feeling a few weeks post Denusomab injection.  Do you still get bone pain especially after bone strengthened? ... View more

Yes thanks.  No active disease thank God.  Next pet in 6 months. ... View more

Next PET scan tomorrow, it does not seem like 7 months.  Starting to feel anxious. ... View more

It is unpleasant.  I have noticed pain in my back flaring but nothing like last year.  I suppose, site of radiotherapy will hurt.  My next Pet scan is in February.  I pray and trust God it will remain dormant. ... View more