Secondary breast cancer in the lungs, vertebrae and liver

Hi, so sorry you find yourself here in this group, but  there are quite a few of us so you are not alone. It will all be much clearer when you have seen your oncologist and found a treatment plan that works for you. There are so many types of treatments and there are new ones coming along all the time. I have been having treatment for my secondary cancer now for 4 years and hope for many more, my original cancer was 20 years ago so we must be positive. If there was any advice i would just say please take control of your treatment and check  every appointment and any scans, CT, MRI . results yourself. There are so many more people now with cancer that the hospital staff are very busy so we must chase up things ourselves, no disrespect to them at all they are just overworked. I would also write down all the phone numbers of every department you have to deal with and any secretary number as these will be very helpfull if you need to chase any results. I wish you all the best Dawn

Hi Wino, I can't thank you enough for your reply, it gave me some hope, after a very difficult few days. My prime cancer was 10 yrs ago, that time I didn't feel ill until the chemo and radiotherapy started, so it was easier to be positive as I knew the treatment was helping. Now I feel anxious as I've been having lots of tests since Oct but no treatment. It's taken a long time to get the diagnosis due to delays and cancellations. I am losing weight and the coughing and shortness of breath restrict me doing most things. Tomorrow I will chase up the referral and try to contact a macmillan nurse for help. Thanks again, I will definitely follow your advice on taking control. Thanks for sharing your experience. Best wishes Battie 

Hi Battie, i am pleased to hear you will chase up everything i know its a difficult to do when you are feeling poorly. Yes my first port of call would be to chase up your referrals. Dont forget you can contact your GP and ask if they know anything as letters from any scans are sent to them too. I would also tell your GP about your weight loss and shortage of breath because its important he knows, he could hurry things along, because you have not seen an oncolgist yet and  they will be unaware of how much its taking a toll on your general health. Keep chasing Battie and you will get there all the best Dawn

Hi Battie sorry that you joined.

I too have secondary breast cancer in my lungs and breathing is hard work. The GP thought it was asthma so treated me for that with inhalers etc for 9 months before I was tested properly. I am now taking Ibrance (Palbociclib) and Letrozole.  Things are now stable and I also have oxygen therapy and morphine to help with the breathing.

Oncology are great, be prepared before your first appointment, there will be a lot to take in, I find a little note book helps.  Write down names, nurses, phone numbers , emergency numbers, that way when you need someone you have all the details. 

This group is great, lean on us, oh and another thing…..don’t read the internet, it’s out of date and it will give you nightmares 

Take care of yourself xxx

Hi Battie

So sorry about your recent diagnosis, it such a awful shock & a lot to process. I found out I had SBC last July in my lungs, spine & pelvis my primary was 23yrs previously, I was devastated after being cancer free for so long. I didn't start treatment until September due to delays with appointments & biopsies etc. I am on Ribociclib, Letrozole & a Debosumab injection once a month, just started my 5th cycle I found the first couple of months quite difficult but side effect symptoms have settled down now & tolerable I  mostly lead a normal life it's just tiredness that has been the main side effect now. I lost 2 stone in weight but now starting to put on a few pounds..my BCN has been so very helpful & my first contact if I am worried about anything at all. I have my first scan on 31st Jan since starting treatment for comparison to see if treatment is working for me. 

Hope you  get your oncology appointment & treatment plan very soon. 

Best wishes x 

Hello everyone, thank you so much for replies with sound advice and for sharing your own experiences. After a difficult start to the day things have improved. I have a GP appt tomorrow late afternoon, I have made contact with the BCN, who is so kind, and she assures me that I'll have a call tomorrow to book the oncologist appointment later this week. Thank you so much for helping me, and especially for sharing your own experiences, you've made a huge difference. xx 

xxI could,nt be happier for you great news xx

Further update. Yesterday was stressful with no contact from oncology. I did see the GP which helped and I now have copies of all my test results. This morning after making two more phone calls I am told there is a letter in the post, which of course hasn't arrived. But my lovely BCN told me I have been given an appointment for next Mon late afternoon to discuss a treatment plan. So things are moving on slowly, unlike my health which is rapidly declining. Thank you for listening. xx 

Hi Battie, I had a long wait to get a treatment plan after been diagnosed with SBC. After a biopsy, they couldn’t decide whether the breast cancer oncologists or endocrine Oncologist should take on my care. I was beside myself with worry. As soon as I did see the oncologist and she told me that she would have me on treatment the following day, the relief was huge. I felt back in control, and I am sure you will feel the same. Sending you strength and a virtual hug. X 

Thank you so much Titsup for sharing your experience with me, it has helped such a lot. There are so many negative thoughts going through my head at the minute. x