De novo diagnosis anyone had experience?

Hi K

I am really sorry to hear about your diagnosis. I am on a different drug to you but thought I would reply as I was diagnosed de novo back in March this year. I am 37.

I had no primary breast cancer, I was fit and healthy I thought then out of the blue in January I started with back pain. I thought it was a pulled muscle so took painkillers. 7 weeks later the pain was unbearable and I could barely walk so I went to A&E. After lots of checks they identified it was SBC which had spread to spine, pelvis and liver.  So I totally understand the shock and devastation.

I am on letrozole, Ribociclib and zoladex. The two scans so far have showed improvement, my next scan is next week.

I must admit I really struggled at first but with time my head is a bit clearer and I'm remaining positive. There are so many treatments available nowadays and new drugs coming out all the time.

You really need to just take one day at a time. Make sure your kind to yourself and take time out to rest, or do something you enjoy. Don't let the cancer stop you living your life. Living with cancer is a new normal but you will get your head around it.

Have a read of the positive stories thread in the chat section. It should give you a lift as lots of people are doing well on the newer drugs and living normal lives.

Are you in any pain or discomfort?

Take care

Daisy

Hi Daisy

thanks for getting back to me. sorry to hear your diagnosis, but good to hear you have shown improvement so far, long May it continue. 
I just don’t seem to be able to get my head round it and time only seems to make it worse. I will take your advice and try to get on top of my anxiety and focus on the day by day rather than bigger chunks of time. My biggest issue is I cannot sleep with antidepressants and sleeping tablets  I manage about 3-4 hours but no more and that hasn’t improved at all with time which is my biggest challenge that I have been unable to get on top of. I don’t currently have pain, just the knowledge that my lungs are compromised although they did show minimal improvement in the first three month scan. 

I hope your scan goes well with your scan next week. 
Best wishes

K

Dear K, I’m the same as you (more or less) diagnosed with primary then 6 weeks later secondary to the bones.  That was April 20.   I’ve been on palbo, Letrozole, zoladex which I’ve tolerated really well.   It’s a shocking diagnosis and takes some time to come to terms with but as Daisy says, it becomes your new norm.  Your automatic reaction is to focus on wills and funerals and that normal too when you’re in shock.  There are quite a few treatment options out there, it’s not all doom and gloom.  The shock will fade and you will find you’ll really want to get on with living.  
  
I walk miles each day with my fit young dog.  Gym sessions and socialising ( safely in my bubble ).  Live your life well now.  Enjoy everything, you’ll have your moments of despair, don’t feel guilty about that, but pick yourself up, poor a glass of wine and smile.   Axx

I signed up to Macmillan in order to respond to this post.

I was diagnosed de novo a little over two years ago and have been on palbo/letrozole for that entire time (along with denosumab for bones and zoladex to shut down my ovaries as I was pre-menopausal).  At the time it really bothered me when surgery was taken off the table ("in order to put a lid on the cancer", as the breast surgeon told me) which didn't make sense then but it does now. My spine and pelvis were a mess and delay in treatment and the risk of surgery wouldnt have had benefit. I was told "potentially down the line" and that was the end of the discussion.

Well, two years down the road and I am being lined up for surgery now because my most recent scan showed some new activity in one or two lymph nodes. As the drug combo has worked so well in resolving my bone issues, and there are no changes there, local treatment through surgery is the right choice compared to moving on to another drug line. So surgery can happen, but in specific instances where that local treatment benefit outweighs the risks. I hear you about the psychological aspect, though, and even though the primary shrank by 50% the appearance is a reminder every time I take off my shirt.

It takes time to come to terms with this diagnosis, and I had to work with a therapist earlier this year to help me overcome some anger issues I was having. If you can access some way to speak to a professional about this, ideally through one of the support groups like Maggies or Breast Cancer Haven, that may be helpful, especially as the lung spot concept seems to bother you the most.