Further to my recent post below, I had a follow up consultation yesterday and it wasnt what I was expecting at all. Having been told during my time in hospital that the MRI scan showed a small anomly on the right side, yesterday I was told that when the neuro oncology team examined the scan more closely, in fact there are a significant number of areas not actually on the brain itself but on the lining of the brain, the meninges. The recommendation is WBRT starting with 5 daily sessions then reviewing with a view increasing to 10 if necessary. After WBRT, regrouping to decide next line of treatment likely to be oral chemo or IV chemo. I was all armed with my info on the stereotactic option and other info off here for my one tiny lesion , so this took the wind right out of my sails. In the meantime Im to carry on with Letrozole and Denosumab until after the WBRT. I asked what further options were available and she said the only other option is not to have WBRT and just carry on with whatever meds we put into my plan. I wont do that though, she said Im fit and healthy and relatively young at 56 so i can tolerate potential side effects so I will be doing the treatment.
Since the first 2 episodes of numbness, Ive been experiencing an increasing number of episodes on a daily basis, 3 and 4 times a day plus blinding headaches. Its been horrid. They gave me steroids yesterday to take for 10 days and its already helping thank god.
WBRT to start in next couple of weeks.
Very scary times but got my head around it now (no pun intended). Let the battle commence. Got my good friend Clare (BellaE) backing me every step of the way and read another post earlier on here, which included advice on meds to help with memory loss so im armed and ready again for my next appointment thanks to this group. Thanks everyone, youre the best.
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So Ive been in hospital for over a week. had 2 episodes of numbess down left hand side. All was pointing possible TIA mini strokes until MRI scan came back yesterday with abnormality on right side. Upshot is its either a stroke or MBC spread to brain. Waiting for more detailed contrast scan but having spoken to the dr, he told me only 2% of strokes dont show up on an ordinary MRI, so its looking highly likely to be brain mets. The covid situation is putting everything behind and even emergency scans are taking up to 5 or 6 days. If I went home, it'd likely be a month. I told dr I feel bad taking a bed up because the bed situation is dire, they are literally fighting for beds. He was lovely though and said his advice would be to stay and get it done asap. They"ve updated my oncologist already so Im pretty sure they know what theyre dealing with, just need it rubber stamping.
The goods news is its only small (but big enough to make all my left side go numb!). Im keeping positive and thinking its better to know so we can get cracking on whatever treatment is needed.
Which brings me to the point, are there any ladies on here who can give me any advice on what they were given. i know everyones situation is different but I just want to start researching without the deaded google. Thankyou. X
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I hope that you get some news soon about the cause of the numbness. Hopefully it does not mean you have brain metastases. But if you do, I'm sure there is treatment available that will help you. If you want to talk, feel free to PM me.
Hi Sophie there's only a 1-2% chance of it being a stroke so i think I need to prepare. I saw your post on stereotactic radiothetapy with interest and googled it. Fits with criterea of metastatic cancer and less than 3cm. I havent been given detailed measurements but they said it was very small so I think it could be a possibility. Im in BUPA too so I will probably get a second opinion if Im denied it on NHS. Might contact them anyway for a consultation to find out their thoughts as they may well know of something I havent heard of.
Please keep us posted. I hope you can have stereotactic radiotherapy too if it will help with what's going on. But I suppose a lot depends on what's actually happening, whether you had a stroke or if it is a tumour. I think having a consultation to learn more about your available options is a really good idea. I've sought multiple medical opinions from various doctors, so I didn't reach this decision lightly.
Thanks as ever Sandra. Yes, any info would be great. i want to try and educate myself a bit so i can ask sensible questions and get answers i need from my oncologist
i read Sophies post on stereotactic radiothetapy and read up about it so thats hopefully an option x
Don’t give up that bed! Too many of us think we’re not in bad enough shape unless we’re bleeding from the head! Don’t be a Viking please. Take your doctors advice please.
Hi there. I was diagnosed with brain Mets in August. I had multiple small lesions so I had 10 sessions of whole brain radiotherapy (WBRT). The sessions itself took just 5 minutes or less and painless. Prior to that, the radiation team do a plan and make a mask of your head and face. You will be using this for every session. Side effects for me were loss of hair and fatigue for about a month. I was also given steroids for 2 weeks which didn’t agree with me and I suffered from GERD so I also had to take meds for that.
As you have a small lesion, I believe you will probably undergo SRS which is more targeted. I haven’t undergone this procedure but I might do so this month. I’m having an MRI next week to check if there are remaining lesions and if there are, I will undergo SRS. I was told that the planning and the radiation will all be done in a day.
Thankyou so much, it most definitely does help. it makes such a big difference if you know what to expect. Xx
Wow! So glad that you're in the hospital, getting the best and quickest info and resolution!
I'm so sorry for what you've been going through, my gosh!! I can only imagine how frightening this must be/have been! Sounds like the rads will likely help resolve things, though. Sending lots of positive energy your way!
I hope your symptoms are due to a cause other than brain mets, but in case they are, below is an excerpt from the extensive Brain Metastases Chapter in my book "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf. For detailed information, please visit insidersguidembc.com/about
With good wishes.
•For patients with a single large brain metastasis, surgery plus SRS is considered the standard of care. (Adding WBRT can help prevent additional brain metastases, but it fails to improve OS and can significantly diminish cognitive capabilities and QOL).
•For patients with one or two metastases that are relatively close together but in an area of the brain where the surgeon feels it won't cause too much damage to remove them, they may be excised surgically. If the metastases are in an area of the brain where the surgeon feels it would cause too much damage to remove them, SRS with CyberKnife, which is single focused-dose radiation, is a viable option.
•For patients with oligometastases (defined in the video as one to four brain metastases), Stereotactic RadioSurgery (SRS) is recommended. Adding Whole Brain Radiation Therapy (WBRT) thereafter helps to prevent additional brain metastases, but does not improve Overall Survival (OS) and can significantly degrade cognitive abilities and Quality Of Life (QOL). Therefore, SRS is considered the standard of care for these patients.
•For patients with up to 10 metastases: According to Dr. Brufsky, many clinicians use CyberKnife in a series - two or three times for up to 10 metastases - depending on their location in the brain.
•For patients with multiple (widespread) brain metastases, or patients who have a rapid recurrence (i.e. within a few months) of brain metastases treated with SRS, Hippocampal Avoidance (HA) WBRT with Memantine HCL is recommended, although using SRS alone for patients with up to 10 brain metastases may also be a viable option. (The role of systemic therapy in this context is still being explored).
HA (or Hippocampus-sparing) WBRT is a special form of WBRT that spares the hippocampus (a small region of the brain that is primarily associated with memory and spatial navigation) from being targeted by radiation. HA WBRT is accomplished by using Intensity-Modulated Radiation Therapy (IMRT), which is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. Memantine HCL is an Alzheimer’s drug that can help prevent cognitive decline.
Oh my, thankyou so much. I will read the link immediately but youve already given lots of info. that fills me with so much more hope as, Im not going to lie, spread to brain has always filled me with fear. This has really helped me, i cant thank you enough x
Oh god really. Thankyou for sharing that, crikey thats such a relief to hear. That genuinely gives me more fighting spirit. Thankyou thankyou thankyou xxxxx
Thanks Sandra. I’m feeling much better. Eating normal food and have gained back 2 kilos. Hoping to get even stronger. I will be having an MRI on the 14th and this will show if I need to have SRS on the bigger lesions. Thanks for all the support❤️
You should not feel bad for taking up a bed at the hospital. It is what the beds are for. You deserve the best care. I am pleased to hear that you have a kind doctor who is encouraging you to stay in the hospital. I don't know what treatments are available but from listening to the other ladies I think there are good treatments. My friend had radiation on her brain and it really helped her. But from what I hear there are many things available to treat you if it is the tumor metastasizing. You are brave. Hugs Marlene
So glad you have had the scan now and hope you can go home now ... lots of fireworks going off tonight ! ( it’s Bonfire night here in the U.K. ...for our overseas ladies ). Take care ! Much love x 💗
I had sudden weakness in my right leg. MRI showed small brain mets on right side.
I had partial brain radiotherapy. Had it been just one met under a certain size I could have had stereotactic radiotherapy.
You need that scan ASAP to find out number and size of met/s. Then the treatment options can be identified and considered. The sooner, the better.
I also started on kadcyla at the same time as the radiotherapy as previous line of treatment for disease in liver and lungs wasn't working. After the first dose the leg weakness stopped. The mets have significantly reduced.
My advice would be: don't panic but don't delay either.
I am sorry to hear you’re in hospital and dealing with this. Definitely stay and get the scan as soon as you can. With lockdown you’re not missing out on much on the outside anyway! You’ve got some good advice from others here (which helps us all really). Try to rest if you can. Sending virtual hugs 🤗 Vicki
Glad that you are in the hospital, safe and being well taken care of. I know nothing about brain metastasis but am sending what I do have. I have lots of good wishes, good vibes and ,most of all, prayers for you.
Just read the response that you have completed your scan. No matter the results, my prayers are that doctors’ evaluations will result in the treatment that will eradicate the mets!
What a just and generous person to be concerned about taking up a bed. You remain right where you are as you are equally important in need and significance as a fellow human being. I do not have an answer about medications but I really like your style in researching your next step forward..
I’m sorry that you are going through this but approach with calm and know your options because it is obvious from responses that their is a treatment that will fit your diagnosis. Prayers for you and find strength because it’s a process that will get you to a goal of diminishing the tumor.
Praying for God 🙏 to be with you and to guide your doctor's. Glad the scan has been done and that you will soon have a plan to get you better. Many hugs and blessings, Hannah
Oh my goodness. Where I cant speak on this topic I am wishing you well - speedy results and a successful plan moving forward. What a hell of a journey we are all on. Always something, but stay strong and positive and know we are all sending power healing vibes to you! Keep us posted on how you are doing. Faith
Reading this thread has been a real inspiration....Josie is so brave and smart and everyone is so helpful! What a remarkable group. Wishing you all the best, Josie, and I’m so glad we all have each other!
What a lovely response. Thankyou for those kind words. Im really glad I found the group its my first port of call for advice but always get so much support too. Xx
I read where there is a new drug approved by fda in America called Tucatinib used with herceptin and xeloda for brain Mets that are her2+. I think the trial was called Her2climb in case you want to research it.
I can’t remember what receptors yours might be. Just thought I’d throw this out there.
Thanks Stacy, I was HER neg but who know because it can mutate. betterbto be armed and ready so thanks for the info, Ill see what i can find on it. Take care . Josie x
Thankyou for all your advice and support everyone. Had the results and its definitely mets to brain. Just 1 small lesion on the right hand side, right on the outer edge. Very scary to have progression any where but the brain is what I feared the most. However, now Im armed with more information from this group, I feel more equipped to deal with it. Thanks again, you are all genuinely a lifeline right now. Xx
Thanks for the update. At least now you know what you are dealing with. I hope you do not have long to wait until you start treatment. As it's one lesion I hope that it will be easy to zap with radiotherapy.
Josie. With many mets in my calvarium, this is my fear too. And thank you for putting yourself out there here on the board. It's so helpful to us who may go through these things. I wish you healing, and moving right through this without too much fear or pain.
Thanks Chris, Just had letter from hospital to go for the mould fitting next Friday. I'm eager to get started but quite nervous. Has to be done though doesn't it. x
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