Hi we received a positive Sarcoma diagnosis this week and and waiting to hear back from the MDT about next steps. We are terrified , have 2 young daughters and the world really feels like it’s falling apart for us.
I know it’s the shock kicking in but any advice on how we deal with this period would be greatly received.
He is a fit and healthy 48 year old and he found a lump near the clavicle. The consultant originally told us he thought it was nothing to worry about and then when husband went back for results we got this news . He had a CT scan too which was all clear which we thought meant good news.
This is such a shock and I think he would really benefit from having someone who has been through it to talk to in order to help him process it x
Hi Vee48 welcome to the group, but so sorry to hear your husbands diagnoses. I know what a shock this must of been for you both.
My sarcoma started in my womb, when I was 39. For months they kept on telling me it was fibroids, and in the end decided to do a hysterectomy. It was only after this they discovered a tumour in the muscle in the womb. At the time, I was told, it was gone and no further treatment was needed. So for me it was a very strange experience, My cancer was gone, but I never knew I had it in the first place. Unfortunately for me, it came back 5 years later, and is now in my lungs. When I got told this, I collapsed. I really thought that was it. My youngest was 13, a difficult age for most teenage girls, and I was going to leave her. Telling my girls was the worst bit, and it is something I will never forget. My 13 year old was more upset that I had had cancer before, but never told her! She was 8 at the time, and I was trying to protect her, not thinking that this would effect her later down the line. My Macmillan nurse arranged counselling for her at our local hospital, and that helped her so much. Also the welfare officer would have little chats with her at school, and that helped too.
The early days are really scary. You don't know what is ahead, what treatment you may have and how that will effect you. It really is a rollercoaster, but you do get to the point where your feet do touch the ground again.
I now fall into the incurable but treatable bracket. I have been stable for 7 years. So this is something I will always live with, but I do have a very good life, it's just different to the one I had before.
I don't know how old your children are, but I have a couple of links I will share for you about talking to children about cancer which you may find helpful.
talking-about-cancer/talking-to-children-and-teenagers
The Macmillan support line is also available for advice. They are open 7 days a week from 8am until 8pm on 0808 080 00 00
I hope you do not have to wait too long before you find out what treatment plan your husband will be offered.
Wishing you both all the very best x
Hi kboo1823 I am so sorry to hear of your diagnoses. It is terrifying to find out that you have cancer, and to be told it is secondary, I can fully understand how you feel. There are many of us on the site, that are incurable but treatable. Some have done much better on treatment then was ever thought they would. There is always hope.
It sounds like you are at the early stage of diagnoses? once you know what the treatment is, there will be many people here who can give you advice on the treatment. I am usually in the lung-cancer-forum so feel free to come and join there, and there is also the liver-cancer-forum which you can join.
Take care x
