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been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

16 REPLIES 16
MB1965
Member

Re: Update

Thank you Liz, so many of these where treatment was delayed but I'm so pleased they finally diagnosed you. Good luck with your treatment going well and thank you xxx

MB1965
Member

Re: Update

Thank you Cathy, here's hoping. :). Feel better about things today decided to look at things a different way, these tablets are going to keep me here so going to look at it that way rather than what effects I will have. I read something yesterday which has made me feel better, a lady said, everyone on the planet is terminal and it is up to god when you go home, gave me a new perspective on things. Thank you so much for taking the time to reply. Keep fighting Cathy xxx

Liz0418
Member

Re: Update

Hi M819 your appt sounds horrendous I'm 3 and a half years into treatment for sbc after 14 years free. Been on palbo and letrosole for 3 + years which is keeping things stable I had a delay of over 6 months b4 starting treatment as I was told my lump was scar tissue from radiotherapy.  I manage ok on palbo and letrosole not too many side effects . At least you have letrosole to start keep pushing for treatment and results.  Sending love and positive thoughts Liz xx

cathyb9
Member

Re: Update

O my heart goes out to you, so brave to go on your own for a start off. NO ONE should have to go through what you went  through. I am disgusted by the way you have been treated. 
I hope it’s a one off, but even so, what you are going through, she should be more empathic.

Anyway hope you get the Palbo soon I’m on Letrozole aswell as palbo. All women react differently to these two, but a common side effect is fatigue and menopause systems. 
This is a great site and there are FB groups aswell if you need them.

Take care and lots of hugs 

Cathy 

MB1965
Member

Update

Hi, thought I would give an update, had my oncology appointment Wednesday, she was really stressed and somewhat rude, none of the breast care nurses were there due to annual leave and not being their work day. I felt like I spent my whole time apologising as everything I asked was a no or a very stressy answer. I had to go in on my own and asked if I could record it as I was on my own, that was a flat no. Anyway I am now on Letrozole and they need to do another CT scan as the last one was 4 months ago and because it has been so long to diagnoses they need to look at it again before I start the palbo. so a bit more waiting. I am hoping it was just a bad day with her because if it happens again I will ask to see someone else. Fingers crossed the tablets don't give me too many problems. Hope everyone is ok xxx

MB1965
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Thank you Claire. Sorry that you are going through this too. Yeah, I think I will just need to wait and see really. It's  just been such a long process from them finding it until now, 5 months is a long time to wait and wait and wait but hopefully by 8th September and I get my plan and when I will start I will know more. I am getting so much pain in my shins at the moment so once I look at the scan, should no exactly where it is. I can work from home, so lucky in that respect, just hope I can continue xx

Clairew
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi, I was diagnosed in June, bone mets in vertebrae, sacrum and pelvis. I have just finished cycle 1 of palbociclib, faslodex and denosumab. Don’t feel too bad, bit tired occasionally, odd times bit nauseous but take an anti sickness tablet and it goes. Have been bit achy and bit itchy, but put this down to dry skin and lack of oestrogen as I am also on zoladex. I have managed to work 35 hours a week, office based. Like some of the others, I too have been able to freely go to appointments and there are a lot in the beginning as they like to check you regularly. I like you have to work, just pace yourself the best you can. My work have given me a laptop so that is useful if I don’t feel up to driving in and/or too many bugs around at work. Once you have your plan in place you will feel better and focused. 

Claire xx

MB1965
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Thank you so much. Yes once I have the treatment plan and start it, I'll have a better idea on how much time I will need to rest, until I take it, I won't know,  just been waiting sooo long and it's getting painful now so hoping that will be relieved soon. I'll post back once I have treatment. Thank you. Sorry you are having to go through this too. Glad you are still able to work xx

MB1965
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Ahhhh, wow, your mum is superwoman. Bless her, hope she Carries on like this, I think I just need to wait and see and I'll post in here after I've had treatment. Really appreciate you taking the time out to reply. Thank you best wishes to your mum xx

KAZZA1966
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

HI MB1965

Best of luck to you and I hope you respond well to your treatment. I know this is hard to deal. I try to take one day at a time otherwise it can be overwhelming.😃

MB1965
Member

diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi Jan,

Thank you so much for your reply. Yes, work told me I was going to be classed as disabled I'll speak to the Macmillan nurse to see what I need to do thank you. Think I've just been googling to much with all the side effects so will just have to wait and see now. Thank god there is going to be no chemo, well to be honest I'd say no to that again anyway. Hope you are doing ok. Xx

MB1965
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi KAAZA1966. thank you so much for the reply. You have made me feel so much better. I've been worrying about it so much. Sorry that you are having to go through this too. Seems like I just need to wait and see what I'm like on treatment as everyone seems to be different. Best of luck to you, 🥰

Bish12
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi MB1965

I think we are the same age. I was diagnosed with secondaries along with my primary diagnosis. After chemo I am now on letrozole and perjeta injection every 3 weeks. I am ER and HER positive. I returned to work when my chemo finished and work full time but flex my hours so I have one day off a fortnight. I get time off for treatment and appointments but also to manage my disability.  I have just booked in time off after each treatment to help me manage the fatigue I feel then. The rest of the time I am able to manage my office job. I have been back at work for 18 months now.

I have learnt to recognise the signs of when I need to take it easy and allow myself to do that and not think I should do this today ....things can wait. That investment in yourself is so important.

Do get some advice before you talk to your employer so you are clear about your rights and be prepared to adjust your plans as you go along as there will be times when you will be able to do so much and other times when you need to rest. 

Do also look at your early retirement options so you understand what is available for you. It is true that the more I formed you are the better.

Sending you hugs

Secondarysister2
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

My mum was diagnosed a year ago with extensive bone mets. HER2 negative, Estrogen positive. She took early retirement as she is 59 and worked in a nursery with 4 year olds!!! Her sacrum actually fractured on first diagnosis. 

However, my mum is full of beans! She can honestly not sit still … she came round to my house yesterday to do some “light” gardening (she promised she wouldn’t do much)… Well that was a fib!! She over hauled my garden , then she went home and started painting her internal doors!! Then she cooked dinner for my brother and stepdad! We tell her to slow down, but she won’t. She’s so stubborn! She was running off rocket fuel yesterday. Every day is different with regards to her stiffness, but she says it’s only minor and doesn’t take any pain killers. 

As previously stated though, everyone reacts differently to different medications, so see how you get on after your first or second cycle. 

Wishing you all the best! XXX

Jaybro
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi

I’m sorry you’ve found yourself in this situation. No one can tell you exactly what side effects you’ll have (if any) and how they’ll affect you, but I get the impression a lot of people experience overwhelming fatigue. Maybe you could make a start by contacting the MacMillan helpline and choosing the Work option. They are very knowledgeable and can help you plan effectively (as well as making sure you don’t miss out on any entitlements you may have as a disabled employee under the Equalities Act). That may ease your worries about not working - though you may well feel able to take on a part-time role, work flexible hours, work from home, even work full time. Like I said, there’s nothing to say you will be overwhelmed by side effects, especially if there’s no chemo!

Wishing you all the best,

Jan x

KAZZA1966
Member

Re: been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi MB1965

I was diagnosed with secondary breast cancer straight from primary end of May 21.  I have secondary in bones. The treatment I am on is letrozole and Palbociclib and I work 32 hours a week office based.  I am given time off for appointments. Also I have so far only had minor side effects like tiredness, a bit achey and the odd hot flush.  I am her negative as well. 

MB1965
Member

been diagnosed with secondary breast cancer, metasised to spine and pelvis so far

Hi all, I went for an MRI in April for back and numb painful leg which after so many scans, biopsies, etc I have finally been diagnosed (after 10 years free) with secondary breast cancer metasised to pelvis and spine so far, I had another full bone scan Monday and the results will be there when I meet with the oncologist on 8th Sept for them to give me the treatment plan. That will be 5 months since it was found, so much waiting!!! anyway, I am HER2 Negative so at least no chemo this time, I have been looking at treatment etc and a bit worried I won't be able to continue working with the side effects, is anyone continuing to work with medication? I live on my own so I need to work. And I am so sorry that you are all having to go through this XX