Secondary breast cancer in bones

[ByTheSea]

I am new here and about to have my first chemo treatment today for secondary breast cancer in bones and radiotherapy treatment and a full bone scan tomorrow. I have not previously had breast cancer so was straight to a stage 4.

After suffering from March 2020 with long covid which triggered me to develop Graves' disease (treated with meds and thyroid levels are now back to normal), and also going concurrently going through menopause, I have been used to feeling like shit for a couple of years now and have been practicing pacing and mindfulness etc. I was trying to take walks as frequently as possible to retain any fitness I had. I have had pins and needles in my extremities most of this time.

I had a clean mammogram in December 2021 but then developed hip pain whilst walking in about February which moved to lower back pain in March. After a sleepless night with this pain, I called the GP in March who prescribed naproxen and omeprezole for a month, along with physio, which I followed religiously. The naproxen helped but about two weeks after I finished it, I was out for a walk (through pain) and could barely make it home. I resigned to call GP next morning. The next morning, I had diarrhoea and lots of numbness and tingling in my regions there along with it so went for emergency appt to GP who sent me to A&E to be evaluated for cauda equina. I had no breast symptoms until a bit of breast tenderness about a week before, so mentioned this. They decided to admit me for an MRI the next day so I wouldn't need to be on the outpatient waiting list. The MRI showed abnormalities in my spine and pelvis which turned out, after further testing, to be lytic lesions. They also found an irregularity in my breast which has turned out to be grade 3 breast cancer spread to one lymph node and my bones. It has spread to my lower and upper spine and pelvis and I am worried about my neck now as have new pain there. I guess the bone scan tomorrow will reveal any other areas.

The consultants have double and triple-checked my mammogram from December against the ones now and this cancer was not there then, it has both appeared and spread a lot in only 5 months, which I find worrying.

I am currently signed off work but really want to hold on to my employment for the benefits (life insurance, WPA, etc).

I am scheduled for chemo and targeted herceptin and Denosumab for bone strengthening today and radiation to my pelvis and thoracic spine tomorrow. I would love to know any experiences people have with this. I am quite unwell at the moment with it so am hoping that someone can tell me that it is possible for these treatments to help me feel well enough to get some quality of life to make some more good memories - that’s what I’d really like…

There are more treatments every month that help people with stage 4 cancer, hopefully they can begin chemotherapy that helps reduce the growth and size of the tumour.

Unfortunately you are in the worst waiting phase, enough info to have a diagnosis but not enough info for a treatment plan.

If you are on Facebook, there is a great group called Stage 4 deserves more that provides information and support to people in your situation.
There is also a cancer support thread in General health on here that is a good place to vent and ask questions.

Thank you @MrsPnut, I have the treatment plan, starting chemo and targeted therapy in a couple of hours, sure hope it all works. I will check out the FB page and support thread, I appreciate the recommendations. 🙂

I had a different type of cancer but was also in extreme pain and unable to walk. After my first chemo the pain went away. It was such a relief both mentally and physically. I see it as a wonder drug! Ok I lost my hair but it was a small price to pay.

I had 9 rounds of chemo and 35 sessions of radiotherapy. It's not pleasant and I suffered extreme fatigue but my young children did not notice too much. I simply did nothing whilst they were out then put on a smile and sprung into action when they returned.

I did stop working as my mental capacity was limited due to brain fog.

Thankfully the cancer has not been active for 3 years so I live a normal life and no one would know I had secondary cancer. I hope you get the pain relief and effective treatment too.

Sorry to hear your news. I echo @MrsPnut in that there is a cancer support thread running too that is very helpful. I too have secondaries in my bones - big one on the sternum they can see but I suspect more - and in my lungs and pleura, but this is after 11 years of being cancer-free after first breast cancer & a double mastectomy. And an eventual risk reducing surgery to remove ovaries and tubes in 2019 which was a waste of time! I’m BRCA2+ so I was pretty much fucked I guess.

I have denosumab injections too, monthly at the moment, the first one unfortunately coincided with an infection that led to me being rushed to A&E & I was terrified of having the second one but it wasn’t too bad. As it is given at same time as chemo I have no idea which symptoms are which tbh. I had chemo/denosumab on Friday and had a weekend of gastric symptoms, some tiredness, a few aches and pains (denosumab can cause this but I also have an underlying blood disease too) and very low mood but by today feel mainly better.

Like you I was very ill before diagnosis (although in a different way) & bed bound a lot, but now I’m on a treatment plan with chemo and denosumab I’ve actually been better & able to resume some of my normal activities, although at slower pace. I’m not sure what chemo you’re on but I’m on Paclitaxel. It’s not too bad, I’ve now had 4 rounds & it’s getting harder with side effects & imagine that will be the case as it goes on — but like I said at the moment, after a few days rest I’m mainly ok. Nausea is an issue but you can cycle through all the different nausea drugs they offer and see if one works for you. (CBD & diazepam worked for me this cycle but that’s quite extreme!) Eating little and often helps too.

I have a very young daughter (not yet 4) and I’m able to run around a bit, play with her, look after her most of the time, and make memories with her. So there is hope! My oncologist said most women tolerate the chemo and denosumab well and that having chemo for an already existing cancer (rather than having it after a surgery as a precaution) most often makes people feel better as the cancer is actually being targeted. Good luck for today - hope it goes ok. 💐

My mum had breast cancer about 14 years ago that was dealt with with a chemo and mastectomy plus radiotherapy, but a couple of years ago she was getting some pain in her back and legs and they discovered it had spread to her bones. Since then she's been on bone-strengthening treatment which has dealt with the pain and you honestly wouldn't know she has stage 4 cancer! She is healthy, active. She's on strong hormonal medication as her is hormone-receptive breast cancer, and that's caused some side effects like thinning hair, but day to day she is absolutely living life as normal and things are under control, so we are hoping she has many years still with us!

I believe bone mets are one of the 'better' places for cancer to spread as there's a lot they can to do alleviate symptoms and slow things down.

Thanks so much, I'm all done for today, and home with a cuppa.

@Gert12 thanks for sharing, that is great news that the pain was relieved after the first treatment but bravo to you for getting through the rest. I'm so happy for you being in a good place and doing normal things, that is my hope for more of that in my future.

@mowly77 thanks so much - it seems you are a few treatments ahead of me but I'm glad to see you're already feeling better. I'm on Docetaxel + Phesgo + Denosumab. Good luck with your next treatments, I'd be interested to hear how they go.

@Hugasauras thanks for sharing the awesome news of your mum, I'm really happy for her (and you - I see if is a lot for the family to take in as well) and seeing positive stories really helps me to be hopeful to make many more wonderful memories in my life.

I was diagnosed straight to stage 4 in January 2018. I had found a lump on my rib under my left breast. I thought it was due to an old rib injury, certainly did not expect to be told that I had cancer in both breasts and my spine and pelvis. No chemo but I was put on letrezole, palbocyclib and zometa (every three months). 4 1/2 years later, I am still doing ok. Last scans were stable and I’m still doing most of what I was doing before including horse riding and working full time. Just monthly hospital visits. I still remember the early days when I was first diagnosed (I was a week away from starting chemo when I got the secondary diagnosis). Feel free to message me. It definitely helps to chat to people in the same situation. I also found the stage 4 deserves more group mentioned upthread excellent

Thank you @Elisebev, I'm glad you're doing well, living with it and stable. The chemo and radiotherapy earlier this week have done a number on me and tbh I've been feeling dreadful, although meds are helping. I cannot imagine having to work through this, how do people do this?

Often people don't manage to work through chemo and rads. Plus you've had one hell of an emotional trauma over the last couple of weeks. Can you take some sick time off work? It would be one hell of a shitty company to get shirty about an employee taking off time to deal with chemo, rads and stage four cancer?

Gosh OP, how unlucky. :(
When did you get the first actual cancer diagnosis? It sounds like that was in mid-April.

Thanks @Acceptables, my company is fine (would prefer more time at full pay but hey ho). I am lucky and we will manage and I will claim on my critical illness cover policy. DH is looking after me well but I'm in awful shape.

After chemo +targeted therapies Tuesday and Radiotherapy and a bone scan Wednesday, I'm truly feeling so dreadful still and cannot imagine trying to work through this.

@ByTheSea so don't work. Have you got any life insurance or private pension? As well as critical illness cover you may find that both will pay out now given your stage four diagnosis.

Also worth looking at ESA.

Macmillan have a specialist cancer benefits advisor, would be worth a call to them.

I am sure you are all over the place, it is a hideous diagnosis and nasty chemo regime. Hugs from a fellow bone mets patient.

Thanks @lljkk seriously unlucky

Thanks @Acceptables, this is rough, all the best to you too.

@Acceptables I have a private pension to so may depending how this goes, may just go that route. We will be okay.

@ByTheSea one step at a time. Macmillan can help you with various financial cancer related issues. Your diagnosis likely qualifies you for some hidden benefits (eg early pension pay out) for all the things you've been paying towards for so many years. It's not what you want to have to claim and it's very emotional answering their questions but I would do so anyway as it lessens the financial implications which will be one thing less to worry about,

Thank you so much, as soon as I'm feeling even a bit more human, I call them when they're open.