Brain Mets Sisters
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Mara, I'm researching gamma knife for afriend who is facing treatment on Tuesday and was pleased to read that you are still NED from the neck down. Are you happy to share your experiences with her if she has some questions?
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Hello everyone has anyone had a met near/in the vision part of the brand? Been in ER this weekend for bad headache and 50% loss of vision on left side both eyes. Drs are saying it's probably permanent even with radiation and may involve surgery removing that prt of the brain which means no eye sight at all. Looks like my brain mets has returned around the same area as before.Sorry for spelling, lol hard to type understandingly
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Yes, Parry, I have vision issues because of my numerous brain mets.
I've only had WBR, and they aren't going to do anymore because I'm not stable enough below the neck to take the risks on (yep, it's complicated, and I don't have the eyesight anymore to go into it in depth). I can only read/write for a few minutes at a time b'cuz my eyes just mazz out and everything blurs and I can't see a damn thing. Very aggravating because reading WAS one of my pleasures in life. Now I just have to live with it until I . . .
L
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Lita,
Do audiobooks bring you any pleasure? I have found that autobiographies, read by the author, can be entertaining. I think I've listened to "BossyPants" by Tina Fey more times than I should be proud of. Podcasts are also great for when our eyes aren't behaving.
If it is a $ thing, let me confer with in-house tech support, and see what we can't come up with.
Jennifer
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Traveltext, I am happy to share my experiences
She can ask here or PM me.
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Hello friends. Unfortunately my scan today did not bring good news. The spot in the tumor bed that was questionable at my March scan is definitely new growth. Additionally another teeny spot was found. The new spot is just above the tumor bed. I am thankful it is at least still in the same area but dismayed that the news is worse than I anticipated. I will have Gammaknife next week to treat these buggers. I was happy to learn that I will have the mesh mask instead of the halo frame for this treatment. My neuro oncologist felt I was a good candidate for the mask. I found the halo to be the worst part of the treatment last time.
Next up is my full body PET on Thurs. I am still hopeful that I remain NED from the neck down.
Much love to all.
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goodie- hang in there. Cyber knife will take care of it for you.
I appreciate hearing news that was worse than you anticipated as I just went through that myself. One week out and I am able to see the good in the report I received- 22 of my treated spots were fine, 5 were the same or smaller. Yes I have 3 spots that were classified as new but those can be treated by gamma or cyber knife. I have had time to process now and am ready to slay the beast
I will be thinking of you and imagining complete response to the new treatment. Also will be envisioning your cintinred state of NED from the neck down.
Hang in there. We are here for you.
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Thinking of you all and hoping for more good news than bad. 🙂
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Leftfoot, your thoughts perfectly describe how I am feeling. I was knocked down yesterday but today I have taken a deep breath and am ready to face this monster head on. I am so very thankful to have had 3 years of no progression. Now it's time to remind the cancer who is boss.
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Goodie, good luck with treatment
Hoping you remain a unicorn like me, we are still rare to be NED below the head.
LFF glad to hear most of them are shrinking.
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yes. Another miriacle is that insurance approved further cyber/gamma knife treatment without an appeal. We will schedule it when my RO gets back from vacation probably before the end of August.
I am able to be happy with the results. I had 30 lesions treated and the radiologist who read my mri only mentioned 8 spots. Of those all but 3 were stable or smaller and responding to treatment.
The 3 “ new” lesions might have been present in May but weren’t treated. It is unclear if they are new or not. And 2 of them might be an artifact and not actually tumor. The one will be treated as it is in what they call the toungue if my cerebellum and there is not much room to grow there before causing significant issues.
I am choosing to believe that my treatment is working and has stabilized both my brain and liver mets. I might not be NED antidote but have grown to appreciate being stable.,
Thinking of everyone and wishing for the best.
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Stable is great as well for sure.
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You really have a wonderful outlook. I find a lot of peace in reading your perspective. Thank you for sharing.
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My MO called last night. My PET was clear!! My body remains NED. Tumor markers are still well in the normal range, though a little high for me. I tend to run in the upper teens and they are at 22. Normal is below 40. I wonder if that slight increase indicates the new brain met? Just random wonderings... I will see my MO on Wednesday, the day after my gammaknife. He said last night he feels the arimidex is working below the neck and is hesitant to change treatment plans at this time for my body. He plans to confer with the neuro onc this weekend and then have a plan in place moving for when I see him on Wednesday. I feel such relief at only having to deal with my new brain mets and not other spots in the body.
I hope all of you can find some peace, comfort, and happiness this weekend.
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Great news Goldie! I think it’s wise to treat brain and body separately when scans do not show new progression.
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So happy for your Goodie16! I'm sure the gamma knife will get rid of what you have in your brain. Best wishes for your gamma knife treatment. Great that you don't have to do the halo. I still have the scars on my forehead.
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Hi everyone,
I'm new to the forum, but diagnosed Stage IV MBC, Breast, lymph nodes, liver, lung, Rib in March and this week found out it has now spread to my Brain. I am scheduled for a full mastectomy and reconstruction Monday, 8/13. I am thinking about backing out. If all that surgery is not going to prolong my life then I'm not doing it. I don't see the point= Quality over Quantity. Just wondering if anyone else has any idea about the chances of it prolonging my life...odds? etc. I am only seeing 22% rate of survival for 2 years in what I am reading and I don't want 6 mos to a year of that to be spent in surgery. What is your experience? Thanks so much!
also, is there a list of acronyms somewhere? ie WBR? NED?
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Angit...welcome to the threads. Sorry you have to be here under these circumstances. It really sucks.
WBR means Whole Brain Radiation, and NED means No Evidence of Disease.
Kaiser Permanente (my health care provider) does NOT BELIEVE in mastectomies when one is Dx'd Stage 4.
The horse is ALREADY out of the barn, so to speak. Lopping off a boob is only going to DELAY systemic treatment (Tx) for several weeks as you heal, and in the meantime, Mr. Cancer will have a hay day spreading even more. Other medical facilities may have other ideas (could it be "insurance related" so they can bill the insurance co. and make more money???), but you are the captain of the ship, and you have the right to refuse a surgery that really isn't going to add to your quality of life (drainage tubes, pain meds, etc.) and may actually cause the disease to spread.
I was Dx'd St IV de novo (right from the gate) and I didn't have my breast removed either. I've been on chemo for OVER 2 yrs now, and I have still been able to travel (Yosemite, Palm Springs, Mendocino, planning for Grand Canyon in the autumn...). So you can still live a modified "normal" life. I have MORE than 20 brain mets, and two of them are over 4 cm in size.
Just take one day at a time. As I've often said, any day I can still see, walk across the floor unaided, and string two or three semi-coherent sentences together is a GOOD DAY!
If you're in a "legal/green" state, get yourself some CBD tincture (it comes from hemp, so it's NON psychoactive). It will help w/headaches, eye problems, and keep possible seizures at bay.
Wishing you all the best,
Lita
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Hi Lita,
Thanks for your quick response!
I have always planned/pushed having the Mastectomy even before I ever had cancer I said I would definitely do it. I was in denial about being METS. The brain thing made me stop and reevaluate what I am doing and look at the big picture.
I am thinking I will try and push now in the direction of other chemo? and targeted radiation? something else? perhaps. I trust my Breast Doc. So, I may go in and see her too this week. I have an appointment on Thursday with Radiology Oncology and think I will see a Neurologist too before I decide anything else. I just want to cut it all out. I want the cancer gone. but it is systemic so that isn't really going to happen is it? from what I am reading it doesn't go away. There is no cure.
Thanks again!
Angi
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Hi Angi,
So sorry to hear about your metastasis. We always say here, "Don't ask Dr. Google" about how long any of us will live. I did it when I was first diagnosed with brain, bone, eye, lung mets and it told me I'd be lucky to live 11 months. Well I'm still living a pretty "normal" active life and I'm almost 4.5 years out. There are others who have been living with BC Mets for far longer than me.
You are correct that there is yet no cure for MBC (Metastatic Breast Cancer) but with the wide variety of treatments available, many of us live a long time with what seems more like a chronic disease than an immediate death sentence. There was a woman in my support group that lived 20+ years with MBC and in the end, it wasn't the cancer that killed her.
I agree with Lita that having a mastectomy and reconstruction at this point would not be a good idea because it wouldn't increase your chance of survival and may even shorten it because of the long recovery time that you will have to be off of systemic treatments. So much better to keep your natural breasts since you have that option! I have a big scar across my right chest from a mastectomy and failed reconstruction in trying to avoid progression after Stage 0 MBC.
We are here for you! There are fabulous women and a few men on these metastatic threads with a ton of information and love!
Hugs, Susan
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Angit, if you were to have the mx, I would at least not have reconstruction. My onc is one who believes in trying to get the primary tumor out, but in the least traumatic way possible. I get the impression that drs are somewhat split on what to do with the primary tumor when Stage IV--some, like mine, think it's good to reduce tumor load, others think it doesn't matter.
I was originally diagnosed with bc in 2007 as a Stage 2 and had a lumpectomy. I had a local recurrence in 2015, so had a mx with lat flap reconstruction. The flap reconstruction was the worst decision of my life. I've been in constant 24/7 extreme discomfort since the surgery.
I had a lift on the "good" side in 2016 as part of my revision surgery, and that lift masked the new 8 cm primary that was discovered in Jan 2018. I was diagnosed with brain mets in June 2018, and although it's unclear which of the three tumors actually spread, my feeling is that it's this new one from this year, due to how aggressively it has been acting. So in my case, having the reconstruction and breast lift probably contributed to me becoming metastatic. Just my gut feeling.
They fortunately found the brain mets a month before I was supposed to have a mx/reconstruction on my new primary side. We stopped the neoadjuvant chemo I was on, called off the surgery and left the primary tumor there to use as a gauge to see how the new Ibrance/Faslodex/Zolodex route is working. The plan is to see the surgeon again in Sept to see if the tumor has shrunk down some more, and if so, we can possible do a lumpectomy at that point. If I do need an mx to get the primary tumor out, I might have the mx, but definitely no reconstruction. It's just not worth it to me to go through all that hassle of reconstruction and also to possibly end up in extreme discomfort on the new side as well. The only reason I was going to reconstruct before we found the brain mets was b/c I didn't want to be lopsided after all the crap I've gone through with the flap surgery. But now I just don't care.
Susan--glad to hear you are doing so well! That's encouraging.
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Angit, I echo some of the sentiments the others have stated. Your overall health and response to treatment ultimately decide how long we have. I don't believe in that. I was thought to actually be Stage IV since 2015 according to my oncologist. I am still reasonably healthy, NED (No evidence of Disease) and my QOL is very good. I am lucky but also treat exercise as a medicine as I am fortunate enough to still be strong. If you can exercise and stay physically strong, that will help mitigate any treatment side effects. A stubborn attitude is helpful and stop looking at the survival stats. They are usually old and not reflective of current treatments. They also do not take our general health into account either. I do not allow my cancer team to discuss prognosis or predict survival time. I am more than a statistic and have done well despite having a very aggressive form of breast cancer. Good luck, keep us posted.
Lita, I may not say it but I do admire you for all the crap you've been through. I enjoy following your trips, adventures in baking as well. Your sense of humour is very welcomed as well.
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Thanks Nash! I had a nightmare attempt at reconstruction too. I was supposed to be an easy candidate. Nipple-sparing, skin-sparing. My nipple died and fell into the wastepaper basket in my bathroom. The hole where my nipple used to be never closed and kept leaking yellow fluid. Seven surgeries over one year. A hospital stay with IV antibiotics. Couldn't dance for that entire year. Even at the best of it, my reconstructed breast was very uncomfortable and looked gruesome. I finally figured out that no fake boob was worth all of this. I wear a prosthesis that looks and moves more like my natural breast than the reconstructed breast ever did. I also blame the lift on my remaining breast with the fact that my breast tumor wasn't discovered until I found out I was metastatic. I had a 4cm breast tumor that I thought was the implant. The implant had imploded and I didn't realize it. Not sure if my Kaiser doctor at the time was fooled too.
On the good news side, just found out that I was accepted to the Alpelisib + Letrozole trial after quite a battle fought by my MO to get me in. Anyone else on this?
Hugs, Susan
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Anjit,
Two years ago my sister was diagnosed at age 34 as Stage IV - de novo. As has been the experience of several others above, my sister's treatment team did not advise surgery. From the research I have seen there is some improved outcomes (average of 9 months disease free survival) for local surgery to remove the site of the primary tumor itself followed by systemic treatment. http://meetinglibrary.asco.org/content/170268-176 Good luck with whichever path you take
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Yesterday was perhaps the most unbelievable day I have had since being on this cancer journey. I was scheduled to receive my gammaknife on the new spot and new growth in my tumor bed. I arrived at 5:30am and began the prep for the procedure. I had another brain MRI done to allow my neuro onc and the radiation onc to better map the gammaknife. Upon completion of this MRI, my neuro onc appeared in my room and told me that the MRI showed NED!! What had shown up on the brain MRI on July 30th as a new spot was some contrast that had not cleared a blood vessel. In addition the spot in the tumor bed they were concerned about was in fact only scar tissue and not new growth. He was apologetic at the extra worry he caused and explained that sometime this can happen and that's why they do the high-def mapping MRI prior to the gammaknife procedure. I was just so relieved I didn't even care about the misdiagnosis. I still can't fully comprehend that it happened today. I see my MO this afternoon. I'm sure he'll be as shocked as I was.
So I continue to be NED in my brain and body since 2015. Thank you all so much for the support as I dealt with the supposed new mets over the last week. Much love to all.
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Goodie: YAY you! What a relief! I am so happy for you. Love to you! Enjoy your day and do the happy dance!
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Goodie, wonderful news! So glad they checked so well before the procedure.
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Fabulous news!
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Goodie, I am so happy for you.
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Susan,
Yes, 22% living 5 years is pretty grim compared to the 92-98 % chance I thought I had when I started Chemo. I try to stay off google. I want to be realistic, but Just do it. I understand that Nike phrase so much better these days.
I was pretty freaked out Saturday and Sunday, but it has passed. I appreciate the support and it is so good to hear of sister's living so much longer than the statistics.
I would love to live long enough to get cured.
I would love to find the miracle at the end of the rainbow.
I would love to get off this hell-acious roller coaster.
I would love to out live my parents. I lost a sister at 14, so I know what it looks like when a parent loses a child. I don't want that for them.
For now I am going to hang on, and hope the next dip doesn't go any lower. I have decided to just do the lumpectomy/take out as much as she can get out on the right and move on to the next treatment. I was the one pushing for the full mastectomy. Pretty arogant. I didn't really ask her opinion. lol
thanks!
Angi
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