Breast Cancer Now Forum

Oops, I see it's called Spinbaker kitchen now⁹ ... View more

Just confirming, today's meeting is going ahead. Location: Clouds café at base of Spinnaker Tower, Gunwharf PO1 3TT Time: 1.30 I'm on my motorcycle so look out for me on my biker gear. (Myhair is shorter than it was in the pic) ... View more

Next meeting of Hampshire group will be on Thursday 24th November at the Spinnaker Café (Gunwharf, Portsmouth). Meeting at 1:30. Anyone welcome.  ... View more

Hi Claire. We try to meet up about once a month, although it has been a bit haphazard recently, unsurprisingly. Normally we meet in Gunwharf but we have been discussing a Winchester meeting. Would you have a preference for either or somewhere else? Keep an eye on here, one of us will post details and/or send you a message ... View more

It is hard for partners to watch. I know my husband has struggled. I was diagnosed in 2017 (after completing treatment for primary in 2006). I have mets in lungs and bones. The google life expectancy is scary but try to not set too much by it. My current treatment is Palbociclib, Letrozole, Goserelin, Denosumab & Pain relief. Most of the time I feel physically well, mentally and emotionally it's harder. My husband has struggled on and off, (losing his job due to stress was a particular low point, and I truly hope your employer is more understanding) The important thing is to spend time together and however hard it is to talk to each other. We consider ourselves very fortunate that we have been able now to both retire so we can spend time together. The things that I have most appreciated from him are: 1. Being an extra ear in the early oncology appointments as I was in such a state I didn't listen properly. 2. his encouragement to me to get my pain relief sorted (GP not oncologist). 3.being there with support but not smothering, sometimes he gets it wrong as it turns out he's not a mind reader 3. He does my Denosumab injections for me which is 100% better than having to go to hospital for them. 4. being there with support but not smothering, sometimes he gets it wrong as it turns out he's not a mind reader! Your wife will have her own needs and desires, she may want you to be her carer or she may want you to be the sanctuary where she goes to escape all the "cancer talk". Either way you should try to talk to each other and/or find local cancer charities that can offer counselling or other support. We are very lucky here to have Jane Scarth in Romsey who offer so much help. Also I got a lot from Penny Brohn in Bristol, also worth googling. Good luck and I hope you find the same joy & comfort in each other that we have. ... View more

Replying to Tappin Yes it's scary, but you will find many of us live with secondary breast cancer in the bones for many years. Yes it is very common, I believe 1 in 3 breast cancers will spread and of that most are in the bones. I was diagnosed with secondary breast cancer in bones and lungs in April 2017 (after finishing my treatment for primary on 2006). Firstly, there are loads of reasons for pain and it may not be signs of your cancer spreading. You are so fortunate to be getting a bone scan, you will also I'm sure hear hundreds of stories of missed bone mets because pain was dismissed. Main treatment for bones is some sort of bone strengthener, most people seem to get Denosumab which is an injection under the skin (not in a vein) - I get my husband to do mine at home which is a lot nicer than going to hospital. If pain is severe you may be offered radiotherapy to blast the particular area - I personally found that really helpful with my 2 worst areas. Then you should also investigate pain relief, word if warning here, you may find your oncologist isn't the person to talk to about pain as he/she is only interested in treating the cancer. For me  it was my GP that sorted that aspect out, others have used pain clinics and/or local hospice. Please try to be calm until your results from scan come through.   ... View more

Side effects seem to vary wuite a lot, I'm lucky as I have very few, other people I know couldn't support them at all. With Palbociclib the worst is that it affects your white blood count making you vulnerable to complications from any respiratory illness you might catch so you have to be careful to stay away from people with colds etc. The letrozole apparently causes menapausal symptoms but since I had those before I started it's difficult to tell. With the Palbociclib, what is usual is that you start on the highest dose and have frequent blood tests and if your blood count drops too much they reduce the dose. I've dropped down one stage after first 3 months but have since been stable, so that I'm only getting blood tests every 3 months now. Other than that, I feel tired but again difficult to pin that down to the drugs as it could be related to the pain relief I need to take for my bones. ... View more

Hi Beatit Do not lose hope yet. Your situation sounds a bit similar to mine, I too had an enlarged lymph which led to diagnosis. This was in March 2017, after 11 years clear. My first scan report cited numerous lung nodules and bone scan showed many bone mets. There seem to be all sorts of treatments oncologists can try to find what works for you. I am now on second line of treatment doing well (Palbociclib + Letrozole with Goserelin, on a brief pause from Denosumab but expecting to restart that next month). It only took till second scan after treatment started for my "numerous nodules" to become 2 nodules, which began to shrink.  Try to find some local people to talk to, I found that so encouraging in the early days especially. ... View more

Hello Umi, It's all very confusing in he early days. I received my secondary diagnosis in 2017 (after 11 years clear, or so I thought). As I understand it, oncologists don't know which treatment will work until they try it, as each person appears to have their own individual cancer. When I found out my cancer was in my bones and lungs I turned to Google (very bad idea, try not to) and found very scary short life expectancies. Later I met a bunch of ladies (from this group) who encouraged me, especially as several had been living with this much longer. If your mum's cancer is only in her spine, the likely course of treatment will be bone strengthening drugs, e.g. Denosumab injections. Any other drug will depend on what type of cancer, e.g is it hormone and/or herceptin positive or negative. In my experience oncolgists tend to be more interested in treating the cancer rather than the symptoms so it can take a while to sort out pain relief. Best person to ask about that is the GP. If the pain is really bad, she may be offered a short blast of radiotherapy, but again it will depend on the individual oncologist as some seem more keen than others. I had to push hard for radiotherapy to the bones that were causing me most pain (arm and sternum) but I have found it really helped. Hopefully you are allowed to attend appointments with your mum as there is a lot to take in. It may help if you could find someone who speaks her language who has gone through this. For me, talking to others has been the best mental health treatment. Lots of other things have helped with the pain. Try to find a local cancer charity, or your hospital may have a Macmillan centre or Maggies, they usually provide a whole raft of complimentary treatments that can be helpful, again you don't know what works till you try it. Sadly the one thing that you can say is that you don't "recover" from this. Once the cancer has spread, it is with you for as long as you live. However, this does not mean life is over. I carried on working and have only recently decided to quit my job to spend more time with my husband. I don't feel ill, and now that I have my pain under control I can ignore it most of the time. In some ways my life is actually better now as life's priorities get sorted out. ... View more

Went back to bed after taking some Ibuprofen. 2nd attempr at getting up worked much better. Feeling fine now ... View more

Had Oxford Jab yesterday. Woken up stiff all over with headache, no sore arm though. May go back to bed with psin relief ... View more