I have now been on this secondary breast cancer journey for three years and nine months, having originally had breast cancer in 2003. They found I had a tumour behind my sternum and bone mets in various bits of me. Ribociclib and Letrozole kept things stable until August last year, Elascestrant didn’t work so well and after several months of Fulvestrant and Capivesertib, the bone mets were stable but I have a lesion in my liver and the lymph glands in my chest are more active. The cancer is side stepping the treatments now.
So, stopped the Capivesertib and - kaboom - dreadful headaches. Fourth scan of the summer revealed the cancer has spread from a bone met in my skull into my dura. So, oral chemo delayed and next week I start five sessions of radiotherapy on my head.
Whilst I know the process of radiotherapy itself is not difficult, I am nervous about the side effects afterwards. I’ve been warned I’ll lose my hair two to three weeks after the radiotherapy, that’s that when the fatigue will set in too, which will not be pleasant as I’ll also be starting the oral chemo tablets and dealing with those side effects at the same time. What’s more, I’ve had to hand in my driving licence - and whilst I haven’t been driving much, that feels like a major loss of freedom. Will I ever get my licence back, I wonder.
So, I’m in rather a slump at the moment. They’ve given me steroids which have made my mouth very sore and meant a lot of foods taste peculiar. What’s more, at night, I am waking up about every two hours and I crave a good night’s sleep! It just feels like a perfect storm and the future suddenly feels way more uncertain.
I’m wondering if there’s anyone who’s been through this who can just give me a bit of encouragement about what it’s like and how they got through it and out the other side. And what life on oral chemo is like, too.
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That sounds like a horrible combination of symptoms and side effects to have to deal with . Are you part of the secondary private group , you might find others discussing this there if you don’t find anyone who can share their experiences on the main forum . You could also talk through the potential side effects and recovery with the Breast Cancer Now Nurses on the helpline ?
Yes, I am part of the Secondary Group - I thought I’d posted there but maybe I’d missed it? Had I?
Actually typing out my situation helped me get it straighter in my head and I feel better this morning. Looking back at the first PET scan this summer on 6th June, it seems like a long summer - yet it’s also been a whirl of new challenges and, with an added three and a half days in hospital for something else (don’t get me started) I’ve been feeling a bit disorientated by life.
I shall certainly turn to the helpline for advice about the new side effects - and their suggestions for the hair loss and where to find pretty head coverings for a person who doesn’t like hats!
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There’s a private group as well as the secondary part of the main forum if you are not already a member ?
https://forum.breastcancernow.org/g/Secondaryprivategroup/members
Best of luck next week .
hi @Hilary I am in a similar situation in as much as my primary cancer was in 1999 and secondary was diagnosed in March 2023. It is a tumour in my chest wall, a rib and the sternum. I have been treated with Palbociclib, Letrazole and Denosumab but a PET scan this March showed the treatment had stopped working. I then had ten and a half weeks of Fulvestrant and Capivasertib before the Capivasertib was stopped because I developed a rash covering my arms and legs and the area of skin over the tumour. The rash started in May and I was taken off the Capivasertib in July. The cause of the rash is currently unknown but may have been triggered by the Capivasertib. It is not the Capivasvasertib rash or a fungal infection. I had another PET scan yesterday and have a punch biopsy tomorrow to try to find if the rash is the cancer spread to the skin. I am not in a good place at the moment and very nervous of what is to come. My next line of treatment is likely to be radiotherapy to the chest tumour but I have to wait for the PET scan results which I will hopefully get next week. I have no experience of radiotherapy to the head and wish you the best of luck with it. Have you spoken to Macmillan cancer support macmillan.org.uk who are also very helpful? Their support line is 0808 808 00 00.
Sending hugs and good luck to you. xx
Sending hugs and good luck back at you, @DeeBee1982 . Please keep in touch and let me know how you get on. Trying to regard this as a road hump on the journey, not a major change in direction, is hard work and tonight, 2.30am, am not finding it the easiest. Today I watched my elder daughter (41) get upset at the prospect of what I was going through and found myself being the reassurer that the treatment is going to work - whilst, inexplicably, my left ankle has decided to swell, my foot tingle and the left side of my face go clammy and hot! Oh, and I have a couple of odd bruise like marks that aren’t fading. One thing at a time, I’m telling myself - let’s get through the radiotherapy first, then see about the rest. I hope you get your results from the PET and the punch biopsy quickly. I too have a tumour behind my sternum and in the sternum itself - at one point SABR radiotherapy was contemplated but not followed up. It might be worth asking about that as I understood it’s more targeted at the area. (They thought about doing it on my skull Met but there was a risk the bone might crumble and leave me worse off - which I am now anyway!)
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I am really happy to be speaking to you. I had the punch biopsy at lunchtime today having worried myself silly about it all weekend. It was fine - the local anaesthetic worked well. The results will come in about two weeks. I will get my PET scan results on Wednesday. Fingers crossed they are not too bad. The radiotherapy is iffy as I have already had radiotherapy in the breast and some of the areas will overlap. I’ll hopefully find out more from the oncologist on Wednesday. The skin might be an issue if it is a cancer as it is widespread and I’m not sure how they’ll treat it. If I have radiotherapy then it will be to try to shrink the tumour but that area is covered with the rash as well. We’ll see. Do let me know how you get on and I’ll let you know what is suggested for me.
Very best wishes
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Hi, Hilaryt45, prior to being diagnosed with breast cancer I was treated for a neck lymphoma, so not the same but still “head and neck”. I had fourteen sessions of radiotherapy. I expect you will be fitted with a mask that will prevent your head from moving while you are on the treatment table, not nearly as scary as it sounds or looks! I only lost hair in the area that the beam passed through, about a three inch strip behind my ear, it grew back (curly!) after a couple of months but has straightened out now. I wore beanie hats before the treatment to hide the tumour and after to cover the bald patch. Because the beam passed through my mouth it was sore for a few weeks and things tasted a bit odd. It also damaged my parotid gland and I no longer make much saliva. I don’t think your treatment is likely to pass through the same area as mine. Of course tiredness is likely to be an after effect. I kept my mask, the staff already had it in a bag for me, as people often ask to keep them! I have decorated it and it now hangs on the wall. I wish you all the best with your treatment.
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Finished the last session today - and yes, I brought my mask home! Goodness knows why. I’ve been surprised how much the five sessions have hit me. All I remember from the 20 sessions in 2003 was tiredness and the area under my breast needing a dressing. So feeling woozy, nauseous and headachy was a shock. Then, of course, you add in steroids, painkillers and anti-nausea tablets and you can’t tell which are the side effects from what! They zapped my whole head, so I’m expecting hair loss all over.
One thing I must say is 5* to the staff at the radiography centre. Each day they made me feel like I was their most important patient and set me at my ease, explaining what they were doing and making sure I was as comfortable as I could be in the machine.
Now to see my oncologist in a week’s time for the next bit of the plan. Trying hard to regard all this as a road hump, not a road block.
Hi Hilaryt45, I’m pleased to hear that it is over. As you say the after effects could be due to other aspects of your treatment but I imagine you had a much higher dose than I did as mine was in fourteen sessions. I hope all goes well for you at your next appointment.
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A week further on, during which we managed to get up to St Andrews for a fabulous Scottish-Jamaican themed wedding. Oncologist appt yesterday and he took one look at me and said if he started me on the oral chemo tablets now, he’d be putting me in hospital. So I have two weeks of rest and recovery from the side effects of the radiotherapy and can start reducing the steroids from today - hurrah! And my hair has started falling out, as I was warned it would. Another new experience. And an excuse to do very little, sit in an armchair and read a lot!
