Hello all, I could really do with some advice please?
Quick history, my wife is 38, TNBC, mets to lungs and brain.
We went to see a surgeon who said he can remove one 5cm brain met but it's risky, 10% chance Susie won't make it off the table.
We have been offered surgery on the one big met then SRS on the other 4 smaller mets. We really liked this option as I read these procedures would offer longest survival and less recurrence but the risk is now high.
Alternatively, they can do palliative fractionated radio therapy in the required areas.
We are really unsure as it's literally life or death, how does one ever chose in this situation? I am leaning towards surgery as it feels like we could really win but I think Susie is leaning towards the other option.
If anyone can help, offer experience, and advice I'd be so grateful.
As I'm sure you all know. (I write it every post!) We Have two small children aged 3 and 6 so we really do need to fight hard for them, for us, for everyone!
Leo, Susie, Albert and Edith. Xxx
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Winner123
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Hi. I do not have tnbc. I have had radiation to brain. I can’t give advice, but I see no one has responded so I am letting you know I will pray hard for your situation. Our church just had 2 miraculous stage four cancer healings. I’m 63 with older children. Can’t imagine this at your wife’s age. I am so sorry and REALLY will pray.
Thank you. Praying for us is very kind, we need all the help we can get! XXX ❤️
Leo
I can only imagine what you must be going through.
I don’t have experience with brain mets so I can’t offer you specific advice. It’s a hard decision for you to make as a family.
What I would say is a read a book by an amazing lady Sophie Sabbage called Cancer Whisperer. She didn’t have TNBC but she did have extensive brain mets and sought a number of opinions and found a route that helped buy her years with her husband and daughter.
So I am confident that you will find a route through for you ~ my husband had brain surgery on Sunday to debulk as yet an unidentified lump in his cerebellum . He is currently doing well and hopefully being transferred back out of high dependency today onto the ward. There was a chance he wouldn’t make it though surgery ~ 5% which scared the living daylights out of me. At the end of the day it was his choice to make and o supported him and I am looking forward to him being able to come home at the end of the week
Keep the faith, keep exploring options and look at integrative solutions not just mainstream would be my advice.
I am so sorry your family has to go through this. I too have brain Mets and I belong to another forum called brainmets sisters which is part of breast cancer.org. Brainmets sisters is exactly that- all the members have brain Mets. I suggest you look into this forum and join it. You will get a lot of advice from the members as some have undergone surgery and radiation. I had multiple brain Mets so I had WBRT. Praying for your family. Have faith🙏
We have engaged before here as I'd posted in march regarding just being diagnosed with brain mets after last years secondary diagnosed to lung, liver, bones. Since end of march I have been having kadcyla every 3 weeks and my TMs have come down from over 1500 in march to just over 100.
Last week I had a brain MRI and was expecting to receive results on the 4th. Yesterday afternoon I had a call from one of the nurses to ask me to come in today as the results have been reported back already, the oncologist wants to see me to start me on steroids to relieve pressure on my brain and talk about getting some WBRT, I have innumerable mets so SRS isn't an option for me. Currently I have no neurological symptoms and my brain mets were discovered accidentally, had headaches since last Wednesday but did have kadcyla 5 days previously.
I have been keeping up with your experience of radiotherapy knowing it was always inevitable for myself.
I am scared of the prospect of WBRT, how did you find the experience at the time and the immediate after effects?
Hello Caroline. You are in my daily prayers so I’m really happy to hear from you. I’m sorry though that you will be going through WBRT. Don’t get me wrong because WBRT saved me but it was a far from easy experience. The first step is planning and then getting a mask molded to your face and back of the head. You will have to wear this everyday for the sessions (I had 10). Then prior to the sessions, I was put on steroids which gave me acid reflux so then I had to take Omeprazole. Throughout the sessions and until 2 weeks after, I was still on steroids though the doses tapered off. Steroids didn’t agree with me at all. I lost my appetite and couldn’t eat a thing. I was okay for the first 5 days but after that, I started to feel weaker and weaker until I had to use a wheel chair because walking just a few meters tired me out. I managed to finish my sessions then came the long and slow road to recovery. After I stopped taking the steroids, my appetite slowly came back. Then I started walking first 10 meters then up to 100 meters till after 3 months, 4 kilometers. I still have a slight problem with balance but hey I’m walking long distances now so I’m happy. By the way, ask about hippocampus sparing. This is where they avoid radiation to your hippocampus to prevent memory loss. I was also put on Memantine before the sessions, during and after the sessions (about 6 months altogether.). Memantine is for dementia.
I also lost my hair but it started growing back after 3 months. The side effect I distinctly remember was feeling fatigued all the time. Eventually, the fatigue lessened and just walking around the house and going up and down stairs helped. I hope you have an easier time than me but it’s something that I’m glad I did. It’s been 13 months since I finished my WBRT and I feel okay. God bless you.❤️Maria
Hi Caroline, I don’t want to hijack Leo’s post, but I just wanted to say I was thinking of you as I hadn’t seen you here for a while. Maria has given amazing advice here so I hope you continue to do well with treatment. Your TM results are very encouraging. Take care. Vicki
Hi Susie and LeoI don’t have any advice but really rooting for you both and your family . The decision will be made and whichever it is will be the right one for you all at this point in time. I am glad there are options available , my father died of brain cancer when I was young , I’m 58 now. I can remember there were no options really and I remember a very brave man who taught his children how resilient humans are like your Susie right now. Just to add the fact I lost my father early did not shape my life in an adverse way it made me more able to deal with so many situations in life and understand them from an early age.
Good luck Susie with whatever you choose to do and it’s good that there are choices even though it’s so hard to choose in this situation. Praying for you all and many more years with your family.
Hi Winner123 Are these the options given you at the block center in Chicago? If so can you ask your doctor there which one would be his chosen procedure. Ask him if this was your wife what procedure would you recommend? I too will be praying for your family !!
Dear Susie and Leo, is this the situation presented to you at Block in Chicago? I don't have your issues so I can't say what I would do. I can offer....time. Take your time to make a decision. You have many options. And Susie, you have choices. My prayers for you!! Everything will work out with time and prayer 🙏 🙏🙏🙏🙏🙏 My best to you. Marjorie ❤ P.S. have you read "Chris Best Cancer" ? Amazing!
Thank you. We are only consulting with Dr Block. We are UK based. Susie is currently taking 222 Fenben also, everything we can do! I've not read the book but I watched lots of his recent videos online, I think we have most bases covered. I can't make Susie juice as much as I'd like but she's trying hard! XXX ♥️
I'm a long timer with E + mbc (17 + years) and two small brain mets were found about two months ago, in the right inferior cerebellum. I had one treatment with stereotactic radiation and will have another brain MRI about 3 months after that. I found the radiation easier than expected but I'm sure that one session is alot easier than several. My whole cancer journey is quite different that Susie's but I can tell you that having a loving and supportive husband has been one of the best things I could ever ask for! I hope that the two of you will be able to make peace with whatever treatments she has. Sending prayers across the pond......
Great advice, thank you. The report is brilliant, just want I needed. You have the amazing skill of finding the right articles for my needs! Thank you.
My heart goes out to you, Susie, Albert and Edith. Like you, I am an active hubby who has followed this site voraciously, in search of as much info as possible, on behalf of my wife who was DX'd four and a half years ago with de novo Stage 4 MBC. The people on this site have been incredibly helpful to my wife and me, and I hope that you will find hope through the great colleagues who share their journeys, with all of their ups and downs.
I don't know much about TNBC, but I do want to very highly recommend my wife's oncologist, Dr. Nancy Lin, from Dana Farber Cancer Institute to you. MBC with mets to the brain is Dr. Lin's research specialty. She has led clinical trials that have led to new treatments for brain mets. She is an incredible clinician, an extraordinary researcher and an amazingly empathetic human being. Great communication skills and patience forever. Don't just take my word for it, see the hundreds (literally) of five-star ratings at the link below and read the comments--our experiences mirror those of these wonderful reviews. Many on HealthUnlocked have enjoyed her presentations at ASCO, LBBC and EMBRACE as well as other major conferences. Below I will send you a few links that might be helpful to you, including one that summarizes a presentation she did at ASCO in May, 2020 related to a triple drug cocktail that has been approved by the FDA for HER2+ MBC with brain mets. I am hoping this exciting work might relate at least somewhat to TNBC with brain mets. Some of her other work speaks directly to TNBC patients with brain mets. I believe you are in the UK, so meeting in person may be difficult, but I would encourage you to consider a "second opinion" via Dana Farber via ZOOM or some other teleconferencing system. We did many appointments with her during COVID via Zoom and it was fine. She is just the best! And for what it's worth, given your family situation, she is a caring Mom with a young daughter....
(Check out her two-minute video and the ratings and comments--they all represent her in very genuine ways. And she does address brain issues in this short video.)
Tucatinib vs placebo added to trastuzumab and capecitabine for patients with previously treated HER2+ metastatic breast cancer with brain metastases (HER2CLIMB)
Author: Nancy Lin, MD
In patients with HER2+ metastatic breast cancer that has spread to the brain, combining the HER2-inhibiting agent tucatinib with trastuzumab and capecitabine can significantly delay the advance of the disease in the brain and extend patients’ lives, a clinical trial led by Dana-Farber Cancer Institute investigators has demonstrated. The HER2CLIMB study compared the three-drug regimen to trastuzumab and capecitabine alone in 291 patients whose breast cancer had metastasized to the brain. Participants in the tucatinib group experienced a median of nine months before the brain metastases grew worse, compared to 4.2 months for the non-tucatinib group, and survived a median of 18.1 months compared to 12 months for the non-tucatinib group. Based on results of HER2CLIMB, the FDA granted approval of the three-drug regimen on April 17, 2020, for the treatment of adult patients with advanced inoperable or metastatic HER2+ breast cancer, including patients with brain metastases, who have received one or more prior anti-HER2-based regimens in the metastatic setting.
##October 2019 Panel with Dr. Lin on "Optimizing Outcomes for Metastatic Triple-Negative Breast Cancer
I will continue to pray for the healing of your wife Susie😇🙏. I will pray that GOD will give you, and your children a joyful fighting spirit😇🙏 Keep the faith.
What a difficult choice to make. I also don't have to make that choice but I want to let you know that my heart goes out to you and your family.
You asked for our opinions and that is so thoughtful of you. You obviously love your wife and want to know as much as you can before there is a decision made.
I have an enormous amount of faith in surgery. I think some of the best medical personnel in this world are surgeons. In my experience they love their jobs with a passion. My husband and I have both had surgeries that were delicate but we came through them very well.
I have a guest staying at our cottage and he is a healer. He says we can pray to the archangel Raphael for help when we are sick. He prays to him before I go for my scans. I don't know if it works but there is a deep sense of confidence I feel when I am cloaked in Raphael's healing powers. I am doing very well lately so believe it is my faith in my own healing powers, the love of my family and friends and the support I get when I talk to the ladies on this site.
I am picturing your wife getting well and coming home to you and your babies. Hugs Marlene
I am so sorry to hear about this most difficult decision that Susie and you are faced with. Thank you for being there for her, as words cannot express how important it is to her to have your love and support and have you by her side. I can’t offer any advice as I don’t have any experience with brain mets, but I can offer prayers. Praying that the Good Lord will guide and direct Susie and you to the best treatment for her, and may His healing power breathe across Susie’s being now 🙏❤️🙏
I can only offer my opinion as an MBC patient, if I had the same choice to make. This is not based on personal experience but just a gut reaction.
I would side with you and go for the surgery. There is risk to both options but surgery offers a potentially longer life and the opportunity to participate in ever changing treatment options.
I developed 4 tiny "spots" in my brain that turned into tiny tumors last year. I was petrified. But my HMO referred me to their computerized surgery person and instead of regular surgery, I got a rigid mask made to fit me, it was bolted down to a metal table and a computer took over. It was strange, but fascinating--parts of the big machine swooped around me and precisely targeted each little tumor with several low radiation beams.
They intersected inside the tumor and destroyed it--without radiation damage to surrounding brain tissue--!
Then a while later, more "spots" appeared, but the Enhertu I was on shrank them away to nothing, thank heavens. Still, if I get more brain mets, you can bet I'll ask for the cyber surgery again. It made me claustrophobic the first time, so I'll take a small amount of xanax before I go in for it.
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