The MRI results from my Saturday scan were on my patient portal and there are two very small lesions in the cerebellum. I looked this up and found that it can cause poor balance, muscular weakness and difficulty. Just what I've developed. I expect to hear from my onc's office soon as my appt isn't for quite awhile. Has anybody else had this type of lesion? Treatment suggestions? It looks as though surgery or radiation are the primary treatments. I'm a long termer--MBC diagnosed in March 2004 with denovo extensive bone mets and I know that I am really lucky to have lived this long. I have good family support and keep my daughter, our grown daughters and my brother up to date and have told them that I want them to feel free to ask me whatever they want to. In about 3 weeks I'm having lunch with 3 long term friends and I hope we can talk openly about this, too. One of them had an early bc, and they have all lost close friends to cancer. We're all over 65, two in their 80s. I have good support. You want to know what I'm most worried about? The house is a mess--very clutted-- and we really need to sort thru stuff and get ride of alot of it. Maybe this will motivate me more. How crazy is that? I have come to terms with dying. I am clergy and worked as a hospital chaplain in a large big city hospita l while I was in seminary and was with a lot of people as they died. The people I have seen who were dying from cancer had great care and little discomfort and that is very reassuring to me. But I hate what it will do to my husband! We were only married 2 years when I was diagnosed. His two daughters had a very painful time when their mother was dying from MS. Hard on my husband, too! I am hoping that my openness will help give them a more positive experience with death I am surprised that I have so litte anxiety over this! I am mostly focused on what we do next as far as medical appts go. Thanks for letting me vent and tell my story. I'd love to hear about others' experiences with brain mets, esp in the right cerebellum. Sending love and prayers to all.
small brain mets in right inferior ce... - SHARE Metastatic ...
small brain mets in right inferior cerebellum
Sorry to hear things going to brain and a new bump in the roller coaster. I have only been on this ride for a year but am also surprised at how calm not anxious I am about things. No advice on next steps with the brain but wanted to thank you for taking to write out how you are feeling as that makes me feel better about what might come later for me. Thank you!
Thanks, Betty! Your response came just a few minutes after I posted and I really appreciate your response. I hope you do well for a long, long time! More and more of us are.
Sorry to hear your news! I don’t have brain Mets so I can’t comment but my husband who is almost 80 has been diagnosed with leukemia. I’m 71 with stage 4 still in my bones but eye problems and currently lung inflammation. We’ve finally after 10 years contracted with an elder care attorney who has put a Will in place with a Health directive notarized and ready to go to the hospital. Like you we don’t fear death and our State has a “right to die” so that’s another plus. I have taken 5 loads to the Goodwill and started on the Garage. I still need to purge more but what a great feeling If I go first then I want to make it easier fir my husband and son. I’m sure we both have many years left but felt your post hit a mark with me. I hope you don’t feel I’m ignoring the dismay you feel on your diagnosis but wanted to reach out to you anyway. Chris
I really appreciate your note and don't feel as though you are ignoring my feelings at all! I'm 75 and I think age has really helped me deal with this cancer....even if I die tomorrow, I've had a good life, and outlived most of those on my mother's side of my family. It's great that you live in a right to die state. My brother does too and has invited me to live with him if I think I will need that I hope you and your husband will have comfortable time left together and can enjoy that. Sending hugs and prayers.....
Thank you for sharing your story and sorry that you developed cerebellum lesions. Were they identified at brain MRI? If not, I’m sure you’ll have it done as the next step.
I was diagnosed with left cerebellum lesion (0.6cm) by accident (I was moving during spine MRI). There was no symptoms.
Had a STRT (one session), and a subsequent brain MRIs showed decrease in size and perfusion.
I know how difficult it is to wait to discuss the results, but please try not to come to conclusions until then.
Keeping you in my thoughts and prayers!
Thank you! It's good to hear how well the rads did for you. I suspect that stereotactic rads will be the way I go, or maybe it'll be time to move on to palliative care only. I really am okay about all this and worry so much less than I did the first couple of years. My perspective at 75 is very different than it was at 68! When I was first diagnosed I'd only been remarried for 2 years and our daughters ages ranged from 24 to 48. My husband and his daughters had gone thru the long illness (MS) of his wife, their mother, and now our marriage is older and solid and his daughters are so much more mature. So the immediate family part of living with cancer is much easier, established and reassuring. My daughter is in a solid marriage with a guy I like alot and they have good relationships with his sisters and alot of friends and I don't worry about her losing me! Now, if we could just get rid of our clutter and sort thru the closets and lighten the load of stuff...... lol!
My sister had brain mets and lived for more than two years after they were discovered and six months after they came back. She had full brain radiation first and cyberknife the second time. She was also on Kadcyla that entire time every three weeks. She was able to get around quite well with a walker and we put grab bars everywhere as was necessary to assist her balance. The occupational therapy for her was helpful so I would look into that. The therapist came to her house and strategized with us on how to keep her safe from falls. The falls were the worst so please be safe!
Also thank you for your honest brave message about life and death. 🙏❤️
Thanks for the OT suggestion! I've had PT several times here in town and those therapists have been wonderful! The one I worked with the most had started his PT career in the military, was very experienced and just the sort of therapist that was right for me. Great sense of humor. (I had younger brothers growing up and I think that prepared me for dealing with men and male humor!) We have one grab bar in the shower and I do use that quite often. Just knowing it's there is reassuring! And I do have a walker. And a collection of canes, lol! I am sorry that you lost your sister! Our siblings share so much of our own history and losing them can leave such holes in our hearts! My youngest brother died at 17 in a car crash, his life so unfinished-I still get teary when I think about him! I hope that you and your family have gotten the love and support that you have needed. Sending love and solidarity......
Bless you didn’t want to make it about me! I just feel like we were always playing catch up with her struggles and being a construction project manager, I hate to be unprepared. NO FALLING! ❤️❤️
Project manager sounds about right! So far, I've not had to turn that over to my husband, but I know it is coming.......
It us actually totally normal And expected to want to get rid of clutter which we gave collected for so many years. When everyone was sure I was FYI g back in March/April that is exactly what I began. Never finished mind you! I also gave away stuff And now that I think was too premature. But really I don’t care!I have a good friend whose stage 1 cancer spread to her brain only a couple of years after her initial Diagnosis. It was so strange I remember being devastated thinking she had so much less than I had in this already happened. That was a good 20 years ago. She’s doing well and living in Idaho. She did have radiation and now she’s on treatment of Dr. Hayes actually
I am super sensitive to getting rid of clutter after cleaning out deceased loved ones homes and now helping my father to downsize (he has been in his house since 1972). I don’t want someone having to do all of this work for my “stuff”. I’ve actually had my husband tell me to stop because I was getting out of control with donations.
Too funny! Yes, when we think our demise is right around the corner, we get more aggressive with cleaning out to make it easier for loved ones. Now I am in a holding pattern!!
Good luck sister warrior.
As for the decluttering urge, I jokingly refer to it as the reverse nesting instinct. I just wanted to get rid of a bunch of stuff so it did not bog me down. I felt physically lighter!
I love your responses! One of the best things about posting here is knowing we're not alone in this! Thank you all!
Thanks so much for your post. Seems like you are in a good place mentally. You made some good points about being ready to succumb. I feel the same. Have lived. a good life. I feel so sorry for your husband and his family having to face this all again.
Sending you best wishes and hoping you have a long time yet.
I could so relate to the decluttering. We have just moved to a new city and a seniors residence. Lovely place. So I have my best friend coming over for lunch and wanted to make our apartment look so much better so have done a lot of tidying! Looking pretty good.
Cheers, June S.
Yes, I am in a good place mentally! It probably took me 1 to 2 years after diagnosis to get past that initial anxiety that many/most of us feel. My original onc was a truly wonderful person, very direct in communicating, old and wise and experienced. Patients either loved her or went looking for another onc soon after meeting her! Some just could not deal with her directness but I loved it. She had to retire about four years ago and I miss her but my "new" onc is good, just not as wonderful as the first one.
I have no info for you but wanted to say first, thank you for sharing. Second, don’t wait for that Dr to call you, they should not have had that on the portal before they talk to you first, but now not calling you immediately is poor service call them tell them you saw the portal and you want to talk about your options and by the way you’re not dead yet from what I understand there’s things they can do!! Hang on to that beautiful faith, talk with your friends….. you got this! ❤️
My onc is on a much needed vacation this week so not hearing from her is understandable. And for me, seeing test results before I talk with my onc makes our conversation much more valuable as it gives me time to absorb new info and formulate questions for her. I'm a long timer with mbc (17 years) and cancer treatment options have grown alot during that time. I used to have to drive over 50 miles each way to see my onc in a medium sized city at a Cancer Center that had been created by the two largest hospital/medical care systems in this area and now it has been split up again and there are some holes in the new systems that haven't been fixed yet. I've got the phone number of the new practice manager and call her when there are glitches. Thanks for your concern. I feel fortunate to understand how the local medical system works and what it's current glitches are and who to call when I need someone inside the system to advocate for me. (I worry about those who don't get all that!)
Sorry to hear about your brain Mets. What were your symptoms that you have brain Mets. I have 12 tumours in my spine since 2018. They have been stable wit the treatment I am on. I have mild headaches at times and sometimes have to really think what is going on..Theresa
Dear Teresa, I don't have severe symptoms but do have some balance and coordination issues. And my memory is not good. I've done some goofey things as a result, like forgetting to turn the clothes dryer on and not realizing it until the washer finished it's cycle and oops, teh dryer was still full of wet clothes.
Thankfully, I can still laugh at myself!
Glad you don’t have major symptoms. Was it just a routine scan?
No, not a routine scan. I've done so well for so long, I hardly ever get "routine scans" anymore. I am having a bone scan next week. After years of having cancer in my bones only, last fall my left ureter showed up as clogged on a scan and when a urologist removed it, it had bc cancer cells and now there are loose cancer cells that show up in my abdomen mostly. So I am having more scans these days. Fortunately I have really good medical insurance that covers all this with very small co pays when there is one at all.
Hope all things go well with you. Nice chatting💕
So sorry to hear of your progression. I don’t have any experience with this but I do want to offer my support! It sounds like you’re in a good headspace, and who’s to say you can’t live many, many, many more years with this. You have lived with MBC for so very long- this is just a bump in the road! As for getting rid of clutter, it’s good for the soul! I always feel better after I purge. I feel more organized and lighter, like a weight has been lifted! I wish you so much success with your next treatment!
I love your words about getting rid of clutter! So very true! My daughter was here today and she left with some of my unused hair dye and eye make up. That's probably about 0.001% of what I need to shed! I've just finished talking with the last family member that I wanted to tell about the MRI results. I am trying to be as open as possible with them, let them know they are always free to ask me questions.
Thank u for your post. You are amazing and a calm came over me as I read it! Strange for me to feel calm. Sending prayers and love.
Thank you for telling me that! I sure wasn't calm the first months of this whole cancer journey but I am really at a good place with it (in my head, emotions). My quality of life is more important to me now than length of life. I am 75 and my father's side of the family is very long lived. My grandmother lived to be 102. I've always assumed that I would probably live well into my 80s. I suppose it's still possible and I do suspect I could make it to 80.
I was diagnosed with small brain mets to my parietal and temporal lobes (3mm) last November. I had gamma knife radiation in late January. Two follow up MRIs have seen improvement. I’m 67, diagnosed with MBC in March 2016. First cancer in 1994 and then 2005. I haven’t had any symptoms of the brain mets…but they were very small. So while google searches about prognosis are scary, I’m still most bothered by my lymphedema! You have a great attitude. Ask about gamma knife. A weird, but easy, very targeted procedure.
Thank you! And I am glad to hear how well you have done. Gamma knife is on my list of things to ask my onc about! Of the commonly offered treatment, it sure sounds like the best option. I don't think I can get radiation locally but will cross that bridge when I come to it! I live in a very rural area and think I will probably need to drive 50 miles each way (or ride each way, lol) but I did that for treatment my first few years and it has been quite doable.
I am so very sorry that this has happened to you. I am glad you have wonderful support from your family and friends and will share this information with them. I have been open with many people about my diagnosis and have found much love and support and prayers being offered. I think it makes a difference in how we deal with this disease. Although I have not had brain mets, I have had SBRT radiation to two bone lesions. The treatments were relatively easy, painless and seemed successful. I hope that if you need to have this done, that you will have the same experience. Although you have been dealing with MBC for a long time, it does not mean that you can't still have many more years on this earth. I think your faith and not being afraid are good things to hold onto. I, too, worry about the things I will leave behind when I am gone, and how my family with deal with those. My husband and I relocated to another state last November and got rid of so much stuff, but are left with photo boxes filled with photos that need to go somewhere and other things that I keep meaning to go through but haven't. When I have tried to go through them, I find that I get obsessed with it, which I know is not good. Once you find out what the next steps are, I think you should take some time to process the information, share as much information as you feel comfortable with your family and friends and then decide how to proceed. After that, going through stuff and trying to get rid of some things might be a great distraction, but maybe limit it to maybe 2 hours per day depending on you are feeling. As you go through your stuff I hope that the items will provide you with some wonderful memories. I wish you peace and comfort at this difficult time and will keep you in my prayers.
Thank you--especially your suggestion of limiting time clearing out stuff to 2 hours a day! That's the amount of time I have thought about when I think about doing that. I have a 4 drawer file cabinet full of old letters, documents, etc etc. I probably won't get rid of much in it and going thru it will certainly have me revisiting alot of memories. One disadvantage of having a large house is that it was store alot of stuff not really worth saving! lol
Greetings Sister/warrior, and great woman of faith. Like you I prepared to get my documents, will, and funeral arrangements in order. I was contemplating what I would leave to each of my loved one's. 14 years ago my Oncologist said I was going to die, and that I would not live to see 2008, even with the aggressive treatments he was going to give me. Well I am still here with NED, and no additional treatment for 13 years now. DR. GOD knows when I will leave this earthly journey. 😀 Like you I don't fear death, and GOD has granted me more than I expected in grace, and mercy. I have had a great life, and I have told my loved one's I don't want them to cry for me. Unbeknownst to my closest family/ loved ones I have set up a 5 day cruise memorial reunion celebration, that will be stipulated in my will. I do hope/pray when the day comes when I leave this physical body, my creator will say come in my good, and faithful servant. It's here or Heaven for me😇 Thank you for your service to so many as a Hospital Chaplain. GOD bless you , your husband, and your loved one's Amen😇🙏
Thank you! I love your idea of the cruise memorial! My husband and I took an Alaskan cruise just two or three years after I was diagnosed and it was one of the best vacations of our life. Being on Glacier Bay was amazing. Except for the sound of the ship motors, there were no signs of humanity. The sky, the water, the ice bergs and wild life. I thought it was like being present at the moments after creation. I treasure those memories. My mother went on a similar cruise in the 1930s when she was in her 20s and I felt connected to her, too.
Gosh! I'm on a decluttering spree and your narrative has made me see why!
I've just turned 56 and I'm five years into my cancer 'journey' (I so wish I could come up with less of a cliché): first bc diagnosis (DCIS, left breast) in 2016; second bc diagnosis (invasive, right breast) in 2017; incurable mets to bones and bone marrow diagnosed in 2019; mets to brain (left occipital lobe) diagnosed two months ago, so still quite raw. I've recently undergone stereotactic radiosurgery and have had follow-up CT scans (brain, chest, abdomen, pelvis); now awaiting results. Over the past few weeks, I have experienced intermittent headaches, balance issues, double vision and some cognitive function deterioration and memory loss - and I have been warned about the risk of seizures and potential loss of vision.
I've also just been told (following my latest echo) that I'm in heart failure in consequence of the Herceptin infusion I'm given every three weeks to attempt to control the cancer from the neck down, so I'm facing some tough decisions. If the Herceptin is withdrawn, I will be left with zero defence; Oncology is reluctant to withdraw the drug, so are referring me urgently to Cardiology. But that's by the by.
An increasingly complex picture.
Like you, I'm fairly calm and stoic about it all, but sorely disappointed with my medical team (both my oncologist and my GP surgery) for getting things so terribly wrong over the past few years. I shan't go into it here, but lapses have been rife. I have been a staunch NHS loyalist and supporter, but have to concede that the higher echelons and systems are not without fault.
I'm aware that we are subject to different countries/systems, that our diagnoses aren't identical and that my ramblings are unlikely to be too helpful to you, but I wanted to share - and to let you know that you have encouraged me no end! Knowing that you have lived with mbc for so many years now gives me a glimmer of hope: my children are in their mid-20s and far too young to lose their mother just yet!
Meanwhile, the de-cluttering continues apace...
I wish you many more years of pragmatic streamlining!
Oh, thank you! Your note has really touched my heart. Our kids are never really old enough to lose their mothers! My own mother lost her mother when she was just 18. I've always been sad that I never met any of her family, except for a great aunt when I was about five years old. But mom's stories about her mother made me feel as though I knew her. I get alot of my sense of humor from my mom. She died from lung cancer in 1985 and I've been glad she isn't here to have to see me going thru this, but I do miss her at times. "One day at a time" sure means alot more to me now that when I was first diagnosed!
Hi
I've just been diagnosed with 4 new mets in the left and right cerebellum and recurrence of met on duration.
Like you, I'm not anxious.
I'm waiting to have confirmation that I meet the criteria for gamma knife treatment. If you're not aware this is a method of delivering radiotherapy to each met precisely.
Theres no hair loss. Usual side effect is fatigue for several weeks.
It sounds like your small mets would be eligible for Gamma knife treatment.
I hope this helps
Xx
Thank you! Yes, I'm aware of Gamma Knife. I hope you will be able to have that. I'm looking forward to talking with my onc and having her view the scan itself and not just the report from the radiologist. I now have an appointment with her next week. She's on vacation this week, something I'm sure she's needed after all the craziness of the pandemic (not to imply it's over, sadly). She may decide it's better to wait another week to see me as I have a bone scan scheduled between the two appts.
Thank you for your kind thoughts.
I initially thought maybe I should have a PET scan to check for new Mets in the body. However, i realised that there is no benefit in delaying treatment to the brain. If I have recurrence or progression in the body that would require a different type of radiotherapy and/or systemic treatment.
I dont have any symptoms in my body and its been very effective at keeping the disease at bay with few side effects so I'm aiming to stay on kadcyla .
Looking forward to hearing how your journey goes.
Xx
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