You were so kind when I first posted back in October, I was hospitalised and at such a low ebb. The replies were wonderful and really helped me 🙏🙏🙏 ...
After chemotherapy my hair is starting to grow back, the ongoing treatment with Phesgo seemed to be keeping my tumours in bones and liver stable and I was looking forward to going back to work soonish.
However I got the devastating news on Weds that my CT scan to head and neck shows I have multiple lesions on my brain. "More than 5" said the oncologist. I asked if any surgery is possible and he said no. He explained that the chemo and phesgo can't go into the brain which is why although it has helped to reduce my tumours elsewhere in the body, it has failed to stop these forming.
I am to have a single course of radiotherapy to the brain (five days) after which there is no treatment. Needs to be arranged... possibly not for a few weeks. Later, perhaps some drug which is better at passing into the brain than herceptin/perjeta. Anyway the outlook is not good.
I only insisted on the CT scan of head and neck because I wanted to know what had happened to the tumours on my neck and skull (still there, apparently). I wasn't expecting this at all. No symptoms apart from the occasional headache... but they have taken away my driving licence. And onc admitted that if I hadn't insisted then they wouldn't have scanned my head... so we wouldn't even know now! I suppose I should be glad.
My question is... do any of you have experience of this? Should I be requesting a different treatment? I read about this trial which reported this week:
Should I ask for a second opinion? I am in the UK. People keep telling me the onc is really good, v experienced, on top of his game. But he seems so dismissive to me.
Have I only got a few more months with my precious children and hubby? My youngest is about to do his GCSEs. My oldest has some really challenging exams for his MSc. My third has first-year uni exams. My second son lives at home, he has severe learning difficulties, autism and anxiety. We don't know what/when to tell them.
Thanks for helping xx
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Ursula_I
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Ohhh, dear Ursula_I, I am so sorry to read your about your situation! My heart goes out to you and your family....
I'm hoping that someone with a similar experience provides some good information, hopefully encouraging news...
As to your question about a second opinion...I would say "yes", why not? Could only do good?
Going to the "best", most highly-regarded doctors and facilities is great, but I think there might be many ways to define "best". My *opinion* is that you should seek a second opinion from a doc who is *different* from your current one...e.g. maybe at a different facility? I don't know how it works in the UK, but in the US there are the big "comprehensive cancer centers" - research hospitals - and also "community" facilities/docs (and other types, I'm sure). I go to both types that I noted, but my "local" onc, *not* "the best" (on paper) is my primary because she approaches things differently and has more latitude to try different things because, from what I understand, she is less constrained by strict protocols. *I cannot guarantee that my understanding of this is accurate, but I think it is*.
This is just an example of my point which is to avoid someone who might be a carbon copy of your current doc, to see what else might be out there?
Wow, that was heavy duty news, Ursula! My heart goes out to you.
Wikipaedia has a page on the medicine used in the link you gave. Its brand name is Enhertu.
According to Wikipaedia, Enhertu "was approved for medical use in the United States in December 2019,[6] in Japan in March 2020,[8] in the European Union in January 2021,[3][4] and in Australia in October 2021.[1]".
Enhertu is produced by AstraZeneca. The Enhertu website states:
"ENHERTU (en-HER-too) is a prescription medicine used in adults to treat human epidermal growth factor receptor 2 (HER2)-positive: Breast cancer that cannot be removed by surgery or that has spread to other parts of the body (metastatic), and who have received a prior anti-HER2 breast cancer treatment for metastatic disease, or have breast cancer that has come back during or within 6 months of completing treatment for their early-stage breast cancer."
I hope you can find an oncologist in the U.K. willing to discuss the use of Enhertu, and alternatives, in your case.
I'll be thinking of you. Please keep us all informed of what's happening in your case.
God has the final word friend. Pray and seek His wisdom! He said if anyone needs wisdom ask and you shall receive. Drs can only manage disease however Jesus came to heal ALL from disease. Praying for you to have wisdom and for a complete healing for you and your precious family. Our loving Father is faithful my friend! 🙏🌻💝 Happy Mother's day!
Hello Ursula. Don’t despair. I had 21 lesions in my brain and had to have Whole Brain Radiation (WBRT) over 10 days. If I had less than 10 lesions, they would have done SBRT or gamma knife in just one day. Please ask your radiation oncologist why it would take 5 days. Maybe you do need to seek a second opinion although since you are on NHS I don’t know how easy that would be. Also the best test for brain Mets is the MRI. When I had my CT scan, the results showed 8 lesions but MRI showed 21 multiple lesions. I would insist on an MRI if I were you. I had my WBRT in August 2020 and I’m still here now. The lesions have reduced and so far are stable. But I was told that if the lesions grow, the SBRT could still be done so it’s not really a one off thing. The WBRT left me feeling fatigued and with no appetite. But after 3 months, I was feeling okay again. It’s not an easy journey but it is doable. I just want to give you hope and to say that if you have faith in the Lord, all things are possible🙏🙏🙏
Oh my! What a blow indeed. Well I can tell you, that many women have brain mets and lives with them. I don't know why the meds wouldn't affect your brain as well but that is my uneducated opinion! There are meds for this too. So don't worry.. You will be around for a while yet.
Hello Ursula, please check out MBCbrainmets.org where several women tell their stories and experts discuss treatment. Also - SHARE in the US has a toll free helpline that is dedicated to those living with MBC. A volunteer can speak with you about other medications that are approved and may treat brain metastasis. Many people live a long time with brain mets. Please watch the patient stories on MBCbrainmets.org. Helpline number is: 844-275-7427- based in the US. Hope this helps.
Hello luv, I had two lots of radiotherapy to the brain. Brain sparing radiotherapy when the mets were too big for stereotactic RT and 2 years later stereotactic RT to 4 mets which were small enough /fit the criteria.
I would get advise you to get a second opinion. Id suggest the Royal Marsden (Prof johnson) or Bristol (Dr Braybrooke).. There are many other centres of excellence but these are the ones I have experience of. Don't delay. Your GP can get you a second opinion.
Stereotactic RT can be repeated either in the same spot or in other areas of the brain. The side effects were (from my experience) chronic fatigue and as the nerve ends repair, ad hoc pains in my head. I would definitely have this treatment again if required.
Like you, my chemo (Kadcyla) is keeping control of the disease in my body.
I hope that if I do progress in the future I can stay on the same chemo and treat the brain with SRT. The reason is any side affects from my current chemo are minimal. I've been told that the next chemo to try (which would be better at controlling the brain mets) has many more side effects.
I hope this is helpful. I empathise with your situation and your concerns about your son.
I had one session of stereotactic radiation to my right cerebellum about 8 months ago for a few mets there. Of course hearing that I had brain mets was the scariest thing I've ever been told! Losing my sense of who I am, becoming less--those possibilities scared me more than death! But I am in my 70s with no children who still need their mommy! My own onc immediately referred me to a radiation onc, who I really liked! Meeting him and hearing him tell me about radiation helped calm me down alot and I started focusing on the whole radiation process. I had to have an appt for planning the rads--I was put in the position I would be in and the machinery took about a gazillion measurements. I was fitted for a mask that would help me hold my head without any movement at all during the treatment. I really focused on seeing this all as an adventure, like the opposite of being an astronaut, going into tiny places rather than the universe. That worked well for me. The actual radiation treatment took alot less time than getting me in place on the table did. I felt tired the rest of the day and the morning the next day. So far, no signs of those mets show up on scans. I think I'm to have scans every 3 months for about two years and then less often unless there is a reason to scan more often. If I have to have any more brain rads, I think I will be alot less nervous than I was the first time. Oh, after the rad session, I was given the mask. I keep thinking I'm going to put a wig and face on it, but I haven't yet, lol. I hope that in six months you will feel as at peace with all this as I do.
Dear everyone who replied to me - thank you from the bottom of my heart. It helped to hear your opinions, stories and recommendations. I have already had the planning appointment and will be starting the radiotherapy this coming Wednesday. I did query why not more sessions, but was told this is the standard number (5).
I will keep under review whether I ask for a second opinion! I think I am glad to get the WBRT out of the way first. (I was told that the gamma knife / stereotactic rt is not an option for me. Don't know why but I think it has to do with the number of lesions seen on the scan).
My main concern now is working out whether I resign/retire early from my job. My oncologist did not hesitate - no he said, you should not go back to work. The implication was that I will only get worse, and probably quite quickly. All the people I have seen (including lovely Sue Ryder palliative care consultant) have said that I have months not years. I am praying that means more like 24 or 36 months than 6.... I can't actually get my head round any of it.
My next question is, how do I get to Spain? I have been planning a trip for a while. I have some dear friends in Spain and also my brother lives there. But the consultant told me I would be unlikely to get insurance to fly and I should go by car (!). I can't drive so this means someone else. Maybe the train is an option for me. But anyway I am going to post separately about this.
Dear Ursula, I wish you all the best possible outcomes for your up coming treatments. I’ve been following your thread but since I have no experience of brain mets I had no advice to offer. I too have extensive mets among other places also on all spine, including neck and also skull….it’s been a concern of mine that I too might have some spread to the brain later…due to the location of what I have started with at time of diagnosis…so far the oncologist thinks not. As far as travelling goes… I would say go for it…but I’d be more inclined to take the easiest and most comfortable route. Which is probably flying, and maybe consider forgoing insurance? I’m planning to fly out to Uk in September to see my son settle into university in London….and I don’t plan with getting any insurance myself.
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