Secondary breast cancer difficult diagnosis

Hi, my wife was diagnosed with secondaries in the bladder in August. She has had a nephrostomy to ease pressure against the kidney. 

A first chemo was attempted 2 weeks ago on paclitaxel but she had a severe reaction, after 9 days in hospital. She had abraxane (nab paclitaxel) last Thursday.

The usual SEs of nausea and lack of appetite and aches do far.

Hi Aurelia I had stage 3, grade 2 breast cancer in 2012.  I had lumpectomy, chemo and radiotherapy and then tamoxifen/letrazole for 5 years.  Last year I had bone pain in hips and back.  Scans found extensive bone lesions.  They could not find out where it was coming from as no sign of breast cancer this time.  I had to have a bone biopsy and then they found out it was from the breast cancer which had spread through the blood.  I have secondary breast cancer with extensive bone mets.  It did take them quite a while to find out where the mets were coming from.  I did find it extremely stressful waiting and not knowing so I can imagine how you feel.  I am hoping that you get your diagnosis soon.  Sending you hugs.

Lee x

Thank you Lee. I'm so sorry that you're living with this. Your experience does sound similar to mine. They were going to do a bone biopsy after a CT but got distracted by it being possible bladder carcinoma which I understand they had to investigate. Having a blocked kidney has confused everything as they had to check the ureter. Now looking more like lymph nodes are blocking from the outside. 

Hopefully they'll find out soon and then give me some advice on managing it. 

Take care and thanks again for the reply x

I'm so sorry that your wife, and yourself are having to face this.

Thank you for letting me know about your experience so far. Diagnosis of secondary cancer seems to be very difficult so it's helpful to know what other people's experiences have been as communication from the medical professionals isn't always great!

I do hope that the treatment helps your wife x

Hi Aurelia  just wondered how you were doing, have you heard anymore news.  Big hugs.

Lee x

Hi Lee, 

I also had invasive bc in 2012, bi-lateral mastectomy, lymph node removal, followed by chemo,  and was taking Tamoxifen until 2023.  For the past year I've been having leg pain and had trouble sleeping. I went back and forth to the GP, I had x-rays and blood tests and they told me not to worry, that everything was clear. I then started to get back pain and finally they gave me an MRI. This has shown three lesions on my spine. I then had a CT scan where they've seen a small spot on my lung. They're now arranging for me to have a PET scan. I'm angry with myself for enduring this pain for so long, I knew something wasn't right. 

I'm petrified now as to what they'll find with the PET scan. 

I wish I'd made more of a fuss when they took me off Tamoxifen, surely there could have been other alternative drugs? I couldn't get on with Letrozole. 

Thank you for listening. I feel devastated, more for my family and I have a beautiful 2 1/2 year old grandson.

Best regards,

Ann x

Hi Ann,  I was terrified last year when I found out I had secondary breast cancer and wondered if I would see Christmas.  This year I am in a much better place.  Yes we have incurable cancer but it is treatable.  Once you have your scan, they can put a specific treatment plan in place for you.  I didn't get on with tamoxifen or letrozole, I am now on Exemastane which seems to be fine for me.  I am sure you will see your grandson grow up.  The treatments and trials you can go on, are evolving all the time.  We have got this.  Please keep in touch, do you have a date for your scan yet?

Lee x

Ah, thanks Lee, I feel better after reading your message. I lost my sister-in-law to cancer last year but she was too sick and they couldn't treat her. She lived in Ireland. I guess, like you  I'm fearing the worst.

I'm waiting to hear any time now re the PET scan and they've booked me in for a bone biopsy next week. I have a really good medical team and I'm confident they will do their best for me.

Apart from the leg and back pain, I'm perfectly healthy.

All the best to you too.

Ann x

Hi Ann, good luck with your bone biopsy.  I had a CT guided bone biopsy on my pelvis they went in through the bottom of my back.  I think it is a sure way of knowing what exactly the lesions are.  Good luck with your scan and biopsy.  I feel quite good even with secondary cancer and the pain is managed well by tramadol.  Big hugs.

Lee x

Thanks Lee. I think we've been through so much before, we know we are going to suffer pain again but it makes us more resilient.

However, waiting for test resilts can still be scary!

Yesterdsy they decided to send me for urgent radiation treatment on my back for 5 days, I had the first one yesterday. It's mainly to avoid spine compression and to stop further spread in the spine. It was painless and only 15 mins, for which I was grateful.

So, the biopsy and pey scan won't be happening until after the treatment.  I so hope it works  

I've got back into my crocheting to take my mind off.

So glad to hear from you that you're doing well and there is hope always.

Let's keep in touch,

Ann x