Can anyone help put my mind at rest?

Hi Macca5861     I have heard this quite a few times on this forum.I am not in your situation as my breast cancer was 16 years ago , and i was diagnosed like you with bone mets in my spine and many many other bones in March this year. I think its down to different hospitals and oncologists. They all get the job done but in different ways. If you are at all concerned ask your breast care nurse or oncology nurse or actual oncologist to explain the reasons why. If by any chance you still need more information or are not happy with the answers you can ask to speak to another oncologist its fine to get a second opinion.I have read stories that some women further down the line have their breast cancer removed after several courses of chemo and then have radiotherapy after. Every cancer is different i have come to learn that on this site and we all need different types of treatment,i am sure they have you on the right track, but if you are like me i would ask as many questions as you like. All the very best keep safe and well x 

Hi Macca

not quite the same.   My lump was removed THEN I got the secondaries in the bone diagnosis.  Just before that I was due to have a second op as I still had cancer in my breast which was cancelled.  My understanding is that these tumours should shrink with the Palbociclib and Letrozole etc.  Speak to the Nurses on Macmillan chat line they’re fantastic and/or your breast specialist nurse and of course your oncologist.    Please don’t read anything into it this BCM is pretty manageable with these meds and there are some amazing ladies on this chat forum who have been dealing with this for quite some time, which is really promising xx

Hi.. not sure if I can be any help as I’ve just had the surgery to remove breast tumour but I didn’t have it straight away. They refused to remove at first as they said it was a marker to see if I responded to the drugs because I could feel the breast tumour if it changed but not the bone - my breast tumour had begun shrinking from looking at scans every 3 months so a year down the line they offered for it to be removed. As lots of people have said everyone is different and every oncologist has their reasons- also cancers are very different. I’ve read lots as well of people who have had it removed but also lots who have not. Yes you could talk to your team about it and you could also seek a second opinion? I’m guessing they will want to see what the response to the breast tumour is with your drugs to make sure you are on the correct treatment but that’s just me guessing?? Hope that helps a little. Take care Jo x

Hi Jo6

thanks for your reply, they did mention they may operate further down the line, so maybe i will find myself into a similar situation to you.. i just don think i'm having the best of weeks this week so i'm overthinking everything.

My breast was softening quite a bit after just one cycle of pablo, and then in my week break i feel like its hardened again. hope your doing well jo xx

Hi macca5861  

I just wanted to let you know I am in the same situation as you. Briefly  I was diagnosed at Stage4 April 2019. First time diagnosis. After a false start on a drug called Ribociclib, I switched to a palbociclib (palbo). I am now on these at 125mg daily alongside letresole and my monthly bone injections.

A Mascteomy has been ruled out from the start for me, because it 'has spread to my bones. I know exactly how you are feeling. For a long time I seriously thought about getting a second opinion. Then I thought well what am I going to do with a se one opinion, if different results as my current onc won't change her mind and then I  could be refused treatment. Private is out of the question. 

It has taken me over a year to have some sort of acceptance regarding mastectomy refusal. 

Its hard not to overthink any ache or pain you have as just that, an ache or pain. My first mammogram 1 year after diagnosis showed a lot of shrinkage in my breast. I was made up with that.

With your monthly bloodtests and 3 monthly scans, they will show any changes and your oncologist or Breast Nurse will or should be on top of results. Just ensure if you have questions you write them down or you may forget to ask.

We can't change our diagnosis but there is new stuff coming out all the time.

I encourage you to look at the thread on here started on here Positive Stories Only.

You most  certainly are not alone.

Take care and know there will much support from this group if you have any questions 

Xx

Hi Iamlyn 

I think I was having a rough week last week, this diagnosis doesn't half mess with your emotions doesnt it, my boob was softening and then its become hard again so i think that hasn't helped, but it may be normal so i shall fetch it up with my onco next week.

i'm glad your doing well that's very good to here. I have my first scan sometime towards the end of December.

I shall have a look at the thread it may cheer me up.

lots of love xx

I think the mental side is the hardest to deal with. I tried counselling once,never again, not for me. Don't give yourself a hard time it is OK not to be OK.  If you want a chat anytime in or outside this group, either just message me here or privatey. Have sent you a friend request, if it works had issues with this new site.

Let me know how you got on with Onc x

Hi there,

I had delayed surgery because the cancer had spread to some lymph nodes and we agreed that mopping up escapee cells was the priority. Unfortunately ‘neo-adjuvant’ chemo didn’t do much for me. BUT sounds like you’re getting newer & more specific drugs than I had.
Also big downside was that I had to have radiotherapy after my mastectomy / implant surgery which was still causing problems 4 years down the line.The implant was quickly removed with capsular scar tissue as an emergency in August this year. In a COVID world I could not have had that surgery unless as an emergency because they did not have the operating theatre time for elective surgery. 
So I’m also thinking that progressing with the best drugs might be much better than risking delayed surgery and I think most people get some tumour shrinkage. Plus you’ll be benefitting body-wide. It’s difficult, and there’s no such thing as one right choice for everybody. We make the best decisions we can at the time. Ask for a second opinion if you’re still are worried. 

All the best to you

Hi macca5861 I am further ahead of you. I didn’t have the option of surgery and was very angry and scared at the time. I had a pleural effusion and the tumour was very close to the skin surface so it was deemed unnecessary. 
I’m still on Palbocicli (reduced dosage) letrozole and zoladex (no bone juice) and I now have no evidence of disease in the breast. So you don’t need to have a mastectomy for the new treatments to work. 

Thank you for your reply, ive spoken to my oncologist and she's going to see me face to face in 2 weeks. She said all my feelings are normal with it being early days, and i suppose my scan at the end of December fingers crossed will make me feel better if its good results. Hope your feeling well hun.

xx