Not sure where to post

Hi Jo6

I am sorry to hear about everything you are going through.

First thing please do not give up, there are so many treatments available for breast cancer nowadays I am sure your oncologist will have something else you can try.

Like you I have mets in spine, hips, and ribs and it's pretty bad from what they say. I also have it in liver and lungs.  I am also young like you, I am 37 with two young girls.

Please don't give up and try to remain positive, there is a good chance you will respond to the next treatment. 

I am on ribociclib, letrozole and zoladex but only on 4th cycle.

Have a look at the positive breast cancer stories in the chat section. Read the posts from the beginning and there are  ladies on there who have been through lots of different treatments and seen better results later on in treatment, I think Gillyflower was one of these.

What type of bc do you have? Mine is ER+.

Take care

X

Hi, thanks for your reply. I have hormone positive and Her2negative. But it’s just went to base of brain/top of spine so I’m not sure if that puts me in a different category? It has also spread in other parts of body through lymph nodes. I just don’t know anymore if there’s anything they can do? I’m having brain radiotherapy for 2 weeks next week and I am absolutely terrified that I won’t be me anymore!. My cancer spread from Jan to now and I’m not sure why! I changed from Palbociclib/Letrozole to IV EC chemo as there was a spread in my spinal tissues at that time in January and I was told that it had stopped working. Had it? Was the Palbo keeping things at bay but then it had spread in the tissues of the spine? I had so many different oncologists treating me that I just don’t know anymore. I don’t trust or have faith in my hospital or my care and now I fear it’s too late. I’d love to have hope I really would but I’m not sure what to do. Do I go ahead with the brain radiotherapy next week?? I’m so scared!

I’m so sorry to find you in here too. Hopefully we can be of support to each other too when needed. I’m here well... anytime! Take care!

Hi Jo , it was heartbreaking to read your post and I can imagine how scared you must be, I've secondaries to the bones too and am on the same treatment regime as you had previously, palbo etc. However, as Daisy 1257 mentioned, there are a lot of drugs available for our subtype, and my oncologist told me there are new drugs coming out all the time it's like a snowball effect, each drug is better than the last. I have spoken to women on these forums that their second or third line of treatment has been more successful than the first, so please don't give up, there are options for you. 

Take care

Jools xx

Thank you so much for replying but does the brain change things? I’m just about ready to give up. I can’t start a new chemo until after my brain radiotherapy and until after I feel better but then fear that things are spreading elsewhere as I wait! Does chemotherapy reach the brain? Or is my radiotherapy on brain it? If it works it works?? Does the rest of my body not matter anyway if it’s in brain? I was just about coping when the brain was mentioned! Now all hope has left me! So lost and not sure how to move forward!

Jo x

Hi Jo, I can't give you any medical advice, but I do know that I've spoken to women on here who have brain mets that are under control with radiotherapy/surgery. Please put faith in your oncology team, sometimes my clinical team come across as just that, cold and clinical, but they are keeping me alive and well, I let the drugs do their work and in the background I try to stay positive, which is hard I know that, but I keep going, I have to xx 

Thank you so much. I do try but it seems to get harder and harder some days! There just seems to be one thing after the other and I really don’t know how I’m going to do it now with this new development. I always said as ooo OMG as it’s not near or in the brain and now it’s happened and I’m imagining all sorts and all sorts of ways  going to die and my family have to watch. It’s horrible! I don’t want to put them through it especially when theyVe been through so much and I’ll not be there to support this time. I actually can’t bare it!

Ive woken up with the most awful heartburn which is burning my throat too and I’m not sure why!

Thanks

Hi Jo,

You are in a very frightening place right now and I hope my experience can offer you some reassurance. We have the same type of breast cancer. My primary BC was around 10 years ago. Two and a half years ago, after a year of “mystery ailments” and general malaise, I was told the cancer was back. I have flown through lines of treatment: lettrozole, Epirubicin (chemo), Palbociclib plus Fulvestrant, Xeloda (oral chemo), Exemestane and Everolimus. This last one was working on liver mets but not on lungs. In fact it caused pneumonitis. Just before that, I discovered a met in my eye. Scary stuff. Oncologist said it was doubtful mets in brain because of my cancer type. However, radiation oncologist ordered MRI and low and behold a couple of cerebellar mets and a large met on the dura (outside the brain). Whole brain radiation was offered at the time but i, like you, was in shock. It’s like the MBC diagnosis all over again. We decided to wait and see if the everolimus would work but of course I had to stop that. I was terrified about brain radiation but it really was my only option because of the dural involvement. The day-to-day radiotherapy is tough although you are minutes on the table. The mask can feel claustrophobic but you can ask your team for a relaxant. I took one for the first while but then found i could do without. I ended the treatment just over a week ago. I am very tired but have cleared the decks. My family are doing a wonderful job of supporting me. I have learnt to accept help when it’s offered. I am being super kind to myself and will do so for the next while. While I feel a bit odd, I am most definitely myself. I too fear the loss of self. I had hippocampus avoidance radiation because my oncologist knows I wanted to preserve as much cognitive function as possible. Talking to women on other sites, six months post brain radiation they are perhaps a little forgetful but that’s it. I take comfort in that. The last few years have been tough on how my brain functions anyway.

Next line of treatment for me is Alpelisib. We’ve had a devil of a time getting it but it’s been developed to target a cancer gene mutation that make the disease difficult to treat. My cancer has a strong expression of this mutation plus a few more for good measure. The hope is that this drug will stop the cancer progressing. There is also some evidence to suggest it crosses the blood-brain barrier. However, I am hoping that the radiation to the brain will stop the disease there in its tracks. Brain mets are frightening. Mine were symptomless which made the aggressive radiotherapy difficult to make sense of while I knew the cancer was spreading elsewhere. 

I found talking to my radiation oncologist really helped both with the practicalities and with how I was feeling about it all. Sometimes oncologists need reminding they are dealing with humans, usually terrified ones. Just try and organise a time for a chat. Don’t take no for an answer. Have a list of questions for him/her. Also, I think it’s mean they’ve given you a prognosis. My oncologist tried to do that but I reminded her I am not a statistic. Everyone responds to treatment differently and there are plenty other lines if treatment out there, perhaps not for me, yet, but definitely for you.

Didn’t quite mean to ramble on so much so I hope this makes sense!

Every best wish.

Fi.

Thank you very much for that information- it helped a great deal! I’m so scared they are rushing into everything but then I’m unsure if I should ask them to wait?? Not sure if that’s dangerous too??I don’t really know what’s happening or what to do? They want to start the 10 sessions next week- maybe Mon/tues. I don’t know what questions to ask?? I’m so scared I’m not asking the right ones and they are doing whatever they want on my brain because they don’t care and don’t know me. These are my 3rd and 4th oncologists because of people leaving and moving in. I’m in the north of Ireland and am unsure I have the same resources or options available to me?? I’m terrified I’m making the wrong decisions and then the radiation is irreversible?? I wish I knew my oncologists better and anything about brain meds. I’ve had very little time with this new info- bone meds to brain meds- it’s been such a shock. My family don’t know anything to ask either?? They are leaving it to me. I always make the decisions about things and organise everything for them so I feel that they trust me to do what is right but I don’t know what that is?? Have you had big sessions to your whole brain?? Like is my 10 sessions correct to do just now? I don’t know what to do and now really panicking I’m getting it all wrong. I’m so scared. Like should I be researching other options? Do I have time to do that? I don’t know if I’m doing the right thing??

Sorry to ramble but I don’t know who or where to turn to?

Hi,

Your fears are valid. It all seems so rushed. You must be terrified!

First off, you need to talk to your oncologist. Can you contact her/him direct? If not, do you have a nurse specialist? They should be able to organise this. Of course, you will have to sign consent forms before any procedure can begin and the oncologist usually does that. Refrain from signing until your questions are answered and you are willing to go ahead.

May I ask - scary question - how many brain mets you have? Do you have symptoms? The fewer you have in terms of number can sometimes mean you can have localised radiotherapy to individual brain mets and therefore avoid the whole brain radiotherapy. Your team need to make the case for this aggressive treatment so you can make a fully informed choice. If it’s necessary, ask about hippocampus avoidance radiotherapy. To answer your specific question, 10 sessions is standard practice. Also, you are entitled to have a second opinion from another oncologist if you are unhappy with how you are treated or are still unsure about the treatment you’re being offered.

If there’s anything else, just ask,

Fi.

Hi Fi,

I haven’t taken everything in to be honest, I have brain tumours and lesions or something. I was in so much shock I hardly heard anything.

I did already sign as they didn’t give me any choices. Was either have it or not have it! They’ve asked if I have any difficulty with balance just- maybe a little bit but input that down to low bloods which improved after a blood transfusion but I don’t have many symptoms at all. I now have a very sore head with all the stress though! They just seem to be a bunch of new people coming in again giving me treatment I don’t understand and ticking that box. I’m dying and they’ll try to give me as long as they can sort of thing. That’s what I’ve taken from it. They want to give me radiotherapy before I get into trouble is all they keep saying!! I’m so stressed I don’t know what to do.