Diagnosed with SBC but cannot find Primary

I was recently diagnosed with secondary breast cancer spread to lung, sternum and femur but no scans can show the primary lesion, not even a PET scan. They did biopsies from the sternum that showed oestrogen receptor cancer cells, hence they say the primary is in the breast. I am on Letrozole and Ribociclib, but apart from the headaches and nausea, the biggest problem is in my head. This all started with a cough in December and then an x-ray showed fluid in the lung. From there it’s been test after test and I find it very difficult to cope with the roller coaster of emotions and believe this is happening, is this what the rest of my life looks like? How do you all stay so positive and brave?

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It’s completely shocking to find out you have breast cancer through your body when you don’t have cancer in your breasts. It really is a most variable and perplexing illness.

I think I would react like you - why me it’s impossible yet I get told I won’t be cured of it. The more I learn about breast cancer is how variable it can be even though most women are diagnosed with the same kind - breast cancer of no special type!

I am so sorry, Julies, you are going through this. We all know how awful it is. But you asked how we stay so positive and brave and I would like to comment that we don’t all the time. None of us. We all start out scared shitless, progress to this can’t be happening, and then hit I hate cancer and want it to die, and finally, sometimes when years go past, acceptance. And then with that comes peace. It’s all a process. I would highly recommend therapy to start out with.

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I’m sorry to hear what you’ve been going through. But it’s good to talk. And I think that’s the first place to start. It’s difficult to compare how people cope as everyone is different, every story of discovery is different and every journey is different. However, everyone feels shock, no one expects to discover they have breast cancer or cancer of any kind but finding you have secondary and no primary is shocking still.

All the tests one goes through, bring a new fear of something else being discovered. On my BC journey i found a lump first during an self examination, which turned out to be a tumour, then another was discovered, then an MRI, then a CT scan was needed due to high ovarian cancer score, then a PET scan, then an op, then another PET this time on spine as a lump was found ont he CT, then another MRI on Pelvis. Each time was a fresh hell, or at least that’s what it felt like at the time.

What I would say is that both my tumours where mammographically occult and could only be shown on ultrasound and after my mastectomy it turned out I also had DCIS which is how my tumours first developed. So there still maybe something there they haven’t yet found.

I would talk to your breast care team, talk to your cancer nurse, get a referral to counselling or talking therapy both through your cancer care team and via you GP, they can both have a different effect and i would be open with friends and family about it and your worries if you haven’t already. I was really open right from the beginning with my colleagues and with my friends and family and this I found was how I coped best. I also found people came out of the woodwork in terms of experience of cancer this I knew nothing about and I’m terms of active and helpful support. I hope that helps somewhat, stay strong x

Thank you. I do take some comfort from the fact that it seems so many people here have had it for years, when I thought my lifetime would now be very limited.

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Thank you for responding, I think probably I am still in shock and denial really. I had to cancel a dream holiday going overseas to visit family and wonder if I will get there again. I think the drugs obviously help with slowing the spread of cancer but goodness they have pretty unpleasant side effects.

Thank you for replying. I do have a wonderful husband and friends and family who try to offer support, but with family I try to be positive rather than crumbling and maybe scaring them. One thing I have found on this site is that people seem to survive for quite a few years after diagnosis when I believed that my lifetime had become very limited.

It depends. They can have unpleasant side effects but some people do very well anyway and just get on with life. But yeah more and more often I’m seeing people hit NEAD (no evidence of active disease) with a stage 4 diagnosis of breast cancer. Again you can’t predict who will and who won’t but there’s still so many reasons to hope.

Hi …I was diagnosed with secondary cancer in my hip/pelvis first ( confirmed by biopsy) then told had to find the primary cancer. Whilst waiting for a referral, Consultant checked for Breast Cancer (as most common cancer in women). I had a biopsy in my lymph node which confirmed Primary Breast Cancer ( even though they can’t find anything my breasts). I am on also on Letrozole and Ribociclib. I was very confused and was signed off work immediately and have not been back to work since. I received MacMillan counselling as i couldn’t get my head around anything. I have been going to some support groups for Secondary Breast Cancer, organised by BCN & M2C, which has helped allot …(avoided Breast Cancer groups). My advice is to contact the helplines with any questions you have …as it is allot to take in. I concentrate on what I can do which has helped. I have had allot of support from my local MacMillan Team …accept all support offered which is what i have done …and be proactive seeking support (which I should have done sooner) …has been allot of changes for me. You are not alone. I put myself forward for any clinical trial possible …which has helped allot in understanding more my diagnosis/hospital workings etc. lots of positives in signing up for Clinical trials …hope this has helped …

Hi Ladies,

You would think that being given a Stage 4 diagnosis would mean an automatic referral for counselling of some sort, but thats not the case. So much depends on where you live.

All i got was a leaflet about the new medication side effects by the BCN and some phone numbers to ring if i had questions or problems with the medication.

Recently found out via Private route thst NHS do offer counselling which is targeted at helping you come to terms with the diagnosis, but the waiting list is very long 1 year and my local hospital doesn’t provide this service so would need to refer me to another hospital in the same trust.

McMillan counselling can also be hit and miss. I did not find the person i spoke to very empathic.

Also asked about clinical trials and my oncologist was not engaged at all. If i were at Royal Marsden it would be an automatic consideration.

Bottom line is i have no faith in my local hospital, and as and when things change for me will be seeking a second opinion from elsewhere.

Hi Jennifer, it’s such a shock isn’t it. The only support offered has been to join this group or call McMillan. Thank goodness for family and friends. I hope you cope ok and don’t find side effects of the drugs too bad.

Hi, that’s pretty much what I got too and when you’re told it’s stage IV that’s quite a lot to deal with isn’t it, so I guess we should be thankful for other people with similar issues on this forum.

Hi julies52,

Yes its hard to accept let alone come to terms with on your own. I’m single so no family to discuss problems with and most friends turn round and say “there must be something have you looked?”

They believe the media hype and adverts which make out that all this wonderful support is available.

Im not positive or brave.
It terrifies me. Peop just " accept " l suppose.
Very good luck to you

First, please know you are not alone.

You feel a world of emotions. Highs and lows, confusion, determination, defeat, strength, loneliness etc. The best way I have learned to cope so far is:

  1. Eating really healthy for physical and mental health, and better sleep (lots of fruit, veg, nuts, antioxidants, green tea etc)
  2. Taking walks and listening to audiobooks, music, or just enjoying nature. This helps keep my mind stimulated and relieves stress.
  3. Calling a close friend who gives really great advice. Sometimes great advice can change your whole mental outlook.
  4. Meditation. Calms and soothes the mind and body
  5. A warm shower or bath. It can be healing.
  6. Get a massage - it relieves the stress buildup in muscles
  7. Envisioning a light at the end of the tunnel. Imagining life a year from now feeling better, stronger, hair fully grown out and traveling.
  8. Write in a gratitude journal. Stay focused on what you are thankful for.

Sending you and anyone reading this a wave of immense peace, love, and for your smile to radiate again. Stay hopeful, stay positive, and keep pushing through, even if it’s just one day at a time.

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Hi, I read my MRI scan results online early Dec 2023 , realised I had stage 4, after being cancer free since 1996, and couldn’t at first get pass the Drs receptionist to even get an appointment! My MRI had been organised to test the extend of what they thought was Arthritis of the spine. Like you shocked… Moving on they can’t find the primary, but a biopsy indicated it was HER2 -ve ER +ve. I’ve got metastases in my bones… and lungs.
My initial cancer in 1996 was stage 2 ER positve and I had a lumpectomy with ovaries ablation. Plus I was on tamoxifen for 5 years.
Since January this year I had toxicity complications of the liver on Kisquali and forced to abandon them. My Liver readings went suddenly, within 5 days on the drug, to 11 times over suggested limit. I’ve tried for 3 months with reductions, on - off etc but sadly had massive liver effects. Drugs abandoned, on orders of a consultant who told me he was ‘killing me’ with them! Luckily, I have a sense of humour!
I’m left just with intravenous zometa to strengthen my bones and letrozole for the ER positive aspect. Had diffculties with the drugs as collapsed twice…A& E visits for 10 hours or more and dreadful pains in various limbs. Plus the side effects of dizziness, hair loss (hopefully just thinning…fingers crossed!) boils, dry lips, ulcers. Etc… I laughed and said to the oncology nurse how many more side effects do I tick off! Some days it wasnt easy to even keep awake when liver toxicty went high.
However, on a positive note 6 months since diagnosis I’ve found Adcal D3 helps with bone pains, I’m back doing pilates when I can, knitting trauma teds , blankets, hats etc for charity for others facing adversity, reading novels when I lack energy. I’ve joined a secondary breast cancer group who meets once a month and simply trying to get on with life. Friends appreciate that at times I need to cancel meetings / luncheon out or planned coffee met ups and have been exceedingly supportive. I’m fortunate as I have a supportive husband who has just had back surgery himself.
But, after 6 months of my life wasted being ill trying drugs that didn’t suit me I’m more determined than ever to get on and do what I can when I can.
No doubt, there will be crying times and tired times but hey make the best of what one has.
My only son and family live in Australia and I was advised, initially not to travel, so that has been the hardest thing for me personally. I’m hopeful I can fit in some travel this year. Try out in the UK first before venturing further afield.
It’s hard going through this diagnoses, we all react differently and experience different symptons but try to do whatever you can to boast your spirts and make you happy/ or at least satisfied with daily life.
Take care and hoping you too can find a way forward.

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