Hi Bankie and welcome to the forum

This is a really great place and such lovely

People who understand what you are going

Though, I'm sorry I don't have any experience

With your type of cancer, and like you mine

Is very rare to. X x x

Thank you Mylittlesunshine,

Trust us all to be rare cases!

It's must be difficult to deal with any cancer diagnosis but when it's rare it somehow seems so lonely.

I'm so glad this group exists as there is an understanding from others in similar situations.

I can't remember what it's like to feel well but I really hope the day will come soon when I feel remotely normal!

Best wishes to you in your treatment.

Xxx

Hi Bankie,

Just wanted to add my welcome and to thank you for sharing your cancer story with us. You have no need to apologise for the length of your post as the more info you give means people are better able to respond.

You have done what I and a lot of others do, looking  your cancer type up on the Internet as like me, you want to find out all you can about your cancer type. But I would just add a note of caution as I found some sites had well out of date info, while others were downright misleading. So I now only look at well known site like Cancer Research and Macmillan's.

I wish you well with your treatment and would ask you to keep us updated on your progress/situation.

Like the last person, I have no knowledge of your cancer type but wanted you to know this is a great forum with plenty of support on offer.

Please take care, sending best wishes, Brian

Thank you Brian

I realise that googling is not good for your health! I sometimes can't help myself and it definitely is detrimental. Should know better by now.

Cancer Research and Macmillan are wonderful sources of information and I will try and stick to them in the future.

Many thanks for your advice and I will continue to update on my treatment.

Anne.

Hi Bankie,

Thanks for your reply and hope you didn't mind me talking about googling. I found some American sites were the worst and one or two had information that was quite frightening. We do need to find out all we can about our cancers though as I do believe it helps us understand what the treatments are and how they work. For sometimes the doctors/specialist don't always give the information we want or need. As your cancer is a rare one, I can understand your need for more information.

Please take care, best wishes, Brian

Thank you Brian,

I agree some of the American sites are scarey.

I want to be as well informed as possible before I meet with my oncologist in August.

Best wishes to you also.

Anne.

Hi, Anne

I was interested in your post as my best friend's daughter, whom I've known since she was a baby, has just been diagnosed with uterine leiomyosarcoma, with nodules that are likely to be secondaries. This was after her postponing surgery for a "fibroid" for as long as possible...... she is 42 and is on her own with a 10 year old son.

Obviously I hope you've had some better news with the treatment you've been offered since you posted in July. But perhaps not....

I know when I was very ill with head and neck cancer in 2009 (I'm now in recovery) I suddenly stopped posting, as I was full-time trying to just survive. But if you get this message, and feel up to posting, I would really love to hear how you are. Don't worry if it's not "good" news - I just want to get some idea of what my friend's daughter might be offered in terms of treatment.

With love and best wishes,

Bron x

Hi Bron

Sorry I haven't replied sooner but haven't checked in for a wee while.

It's a tough diagnosis to get your head around and I feel for your friends daughter.

Since I last posted there has been some developments.

The Letrazole therapy didn't work so I had to start chemotherapy (doxorubicin) and I'm due my last cycle on 6th Jan.

Half way through I got a CT and the lung mets were responding . I also have a rare metastasis in my pancreas which has also reduced in size.

An MRI to investigate my pain revealed a lesion in my pelvic bone which will most likely need radiotherapy.

It never rains but it pours!

A decision still has to be made as to whether I will be suitable for lung surgery.

Was suffering terrible menopause symptoms so my oncologist sanctioned the use of HRT again as he said in the shirt term it was safe. My tumour was weakly positive for oestrogen receptors but if it had been strongly positive then I don't think it would have been a good idea to use HRT.

Still waiting for the flushes to stop but it's only been 3 weeks so I should be more patient!

It hasn't been easy and I've found chemo to be very debilitating but what I will say is not to be too discouraged. There's plenty of doom and loom stories on the Internet and lots of the information is misleading. There are many survivors of this terrible disease even if it's not curable it is in many cases treatable.

I hope this helps.

Please feel free to ask anything and I will try my best to help.

Xxx

Hi, Anne

Thank you so much for your reply! For some reason, I didn't get an email notification that you'd posted here, so I have only just seen this. (I've obviously not got to grips with this site, properly, as I'm always getting email notifications about a thread which I have no interest in at all.... must try and switch that one off, and this one on!)

I'm sorry you're still having such a tough time with treatment. I really hear what you say about treatment being possible, though, even if a complete cure is unlikely. I sing with a choir for people who've been affected by cancer (in Cardiff, Wales) and have made some great new friends, including a lovely woman who had breast cancer many years ago, then developed sarcoma of the lungs about four or five years ago, which is not curable. She's sometimes in pain, but otherwise is still able to enjoy lots of things in life, with her family.

My friend's daughter lives in France. She has recently had day surgery to remove her ovaries and is recovering from surgery prior to the next appointment with her oncologist, where she should hear more about what her treatment options are.

Thank you again for your kind reply. If I hear through my friend that her daughter might find it helpful to post on this site, I will mention your kind offer of support on this thread, if you don't mind.

With much love and best wishes for your continued improvement in response to your treatment,

Bron xxx

Dear Anne

Further to my last post, my friend's daughter would LOVE to make contact with you herself. I will tell her to look for your post on this website and post a message for you, herself.

With love and best wishes for you ongoing recovery,

Bron x