Forum Discussion
Metastatic de novo diagnosed 20 July
Hello, I was diagnosed on 20 July with grade 2 stage 4 De novo BC. As many of the ladies on this forum have mentioned regarding their own experiences , it’s been a wild roller coaster ride. The diagnosis of BC was confronting in itself, to find out it had already spread to my hip, well I was just gobsmacked. I’m 58 and keep very fit by running and going to the gym. I run around 40km per week and just couldn’t believe I had it in my hip. I’ve absolutely no pain, and ran in a 10km race the day before my diagnosis. Well, I could deny it all I wanted, the fact is, it’s in my hip. The next complete shock was to be told there is no cure. In the interval between the original BC diagnosis and the PET scan(which showed the hip lesion) I’d been reading and researching everything I could on the various treatments etc. and preparing myself mentally for surgery, chemo etc. to then be told that none of it was for me, as it’s metastatic, well that was just devastating. However, I’ve now received some good news. My health team has recommended an aggressive approach to treatment. Since the hip lesion is small and is the only evidence of BC outside of my breast, and I’m young (😂) and fit with no other health issues, they are going to try for cure by starting with hip replacement surgery and radiation, Two weeks post surgery I will start on Chemo for 5 - 6 months and will then undergo a mastectomy. It’s terrifying, but also gives me hope. It’s been 3 weeks now since diagnosis and I just want to get on with it. I see the orthopaedic surgeon on Monday and hopefully have surgery the following week. I’ve found the comments and discussions on this forum to be such a help, inspirational really, so a big thanks to everyone.
22 Replies
- Thank you @Lisa1407, I think I will have the yearly CT for my peace of mind.
- Sorry @PV123 for my misunderstanding. That makes more sense. You should be able to have a yearly scan if it puts your mind at ease. I would push for it if that is what you want. Good luck.
- Thank you for your responses @gumnut and @Lisa1407. I hope your treatment is going well. I am sorry I didn’t explain myself correctly. I was diagnosed with early breast cancer last year which is not currently metastatic.I am concerned about not being able to detect metastasis when there are no symptoms given that the oncologist does not recommend yearly CT scans.
- Hi @PV123, My diagnosis was 3.5 years ago (Stage 4 Lenovo). Had muscular pain but had quite a few mets in hip. I have a PET & CT scan every three months to make sure treatment is working. I am a public patient, so oncologist is not concerned about me having to pay for scans although she does have to work within the hospital guidelines. My guess is you are a private patient. My friend who had Stage 4 was a private patient only got CT scans once a year. In my view, that isn't enough - I believe that small progressions are easier to treat. If the progression is large, the overall tumour burden makes treatment more difficult. Is your CA153 marker an accurate reflection of your status and how often do you have it measured? I am also having circulation tumour DNA tested once a month and the level is reflected in PET scan (ie if DNA level increases new spot will be detected on PET). So, as you can see, I am very closely monitored and very grateful for that. xx
- Dear @PV123,
I was diagnosed de novo last September. - Thank you for sharing that @gumnut. If you don’t mind me asking, were you diagnosed de novo or did the metastasis develop later. It is very confusing when the doctors give you conflicting advice. My surgeon suggests doing a bone scan and CT every year while the oncologist says you don’t need yearly scans because you will have symptoms such as bone pain if the metastasis is in the bones. Your experience has been different, you had metastasis without pain. I am quite confused which way to go.
- Dear @TrenzaloreACT
Wishing you all the very best for your upcoming surgery and plan of treatment. As the other ladies have mentioned, your fitness and good health with help you with your treatment and recovery.
I also wanted to mention to you and @PV123 that when I was diagnosed last year with multiple bone lesions in various bones, I had no pain at all.
Best wishes <3 - Hi @TrenzaloreACT, I was in your position about 3.5 years ago (aged 51). I had multiple hip lesions, so hip replacement was never discussed. I had muscular pain around my hip for about 12 months before diagnosis and was seeing a physio regularly. I didn't have initial chemo or mastectomy. I ended up having mastectomy a few months later because the breast tumours (more than one) continued to grow and have been on many oral drugs since then. The good thing is that although there has been progressions and remissions and more progressions, the cancer has not shown up anywhere other than my hip. Good luck with your treatment and please keep us posted about how you get on with your treatment. xx
- @arpie thanks so much for the links and tips, they’re very helpful 🙏🏻
- Well done, great that your family is so supportive @TrenzaloreACT. Yep, when the going gets tough, the tough get going! No room for wimps!
Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!).
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner'
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
and if into your garden, a Garden post as well!!
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
And we now have a Fishing post, as that is one of my passions!
https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics
All the best with your ongoing appointments & getting your surgery date confirmed.
We have some posts here on what to take with you too, to make it 'easier' for you to pack (tho they lean towards BC surgery, not hip) tho should still be useful. My 2 tips are taking decent earplugs with you and eye mask (like from planes) as hospitals are noisy places with lights on 24/7! My earplugs of choice are these ones (I use them at home too) .... just squish them to pencil size and shove them I’m. I reckon it is impossible to push them in too far! They ‘open up’ and cut out most noise, but you would still hear a fire alarm or someone talking close by.
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1
Take care and all the best xx
