De Novo Stage IV
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hjernt, thanks for sharing and congrats on NED.I wish I’d gotten the option of no radiation (I had a lumpectomy w/reduction and lift to match and am HER2+) but without it we probably wouldn’t have discovered the tiny brain mets (MRI due to headache from radiation skin pain), so I guess it worked out in the end.
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per our discussion about surgery:
https://www.breastcancer.org/research-news/surgery-plus-standard-tx-for-certain-types-of-mbc
Hello everyone 👋
I have not seen Bliss for a while, I hope she checks in soon .
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Twyse like you I have been trolling this sight as my 2nd primary dx on the right side happened in June of 2020. I did have a mastectomy on 12/5/20 due to growth in the tumor even with chemo, I've maxed out the one that worked well. The pain in my arm was my deciding factor. I did have a drain tube for 8 wks and the surgeon has done weekly needle drains due to the large amount of lymph nodes removed. I did go to for a 2nd opinion and they agreed as my 1st dx was Her+ and I'm brac2 and I needed their input to get my insurance to approve the surgery.
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Just checking in. When you were first diagnosed with de novo, was it recommended you have a brain MRI? Last few months I've had tinnitus and mild headaches. My Mo said "well we never did the brain MRI as part of your initial work up for stage 4". Hence my MO recommended a brain MRI. I'm not sure if this is drastic or not. I didn't schedule yet but was concerned about the brain mask, especially with Covid. Do you think I should wear my own mask for it looks like it is very close to the face? Will I be able to breathe, with my mask and the brain mask? I would like to believe the facility sterilizes them but who knows.... Appreciate any suggestions before I schedule.. thanks.
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Tinkerbell, I had a brain mri just after starting Ibrance. I reported feeling dizziness and just fuzzy headed (very medical, I know) and MO arranged it for later the same day. It was clear, thankfully. I don’t remember anything being on my face. Maybe I’m blocking it out?
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Tinkerbell, I was diagnosed de novo in November 2016. I had a brain MRI within a couple of weeks because I had a biopsy positive supraclavicular node, so we knew the cancer traveled north of my breast and also because I’m HER+, which carries a greater risk of brain mets. The MRI was clear but another one 11 months later after nearly a year of chemo, surgery and radiation found 5 tiny mets. They were likely there but too small to see.
The brain MRI itself is easy but you can take something for anxiety if you’re claustrophobic. There is a plastic cage type frame over your face to keep you from moving much but it doesn’t touch your face and you can still wear a regular medical mask too. I’ve had a dozen now at least without issue. And I expect they are sanitized after each use, in case the patients coughs or something.
My personal opinion is always err on the side of caution, with brain mets, finding and treating them while small is huge in terms of successful treatment and response. Good luck 🍀
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Thanks Rosie and Illmae. I was looking on line about the "brain mask", the nurse referred to when I asked about this MRI. There are interesting masks on line for brain MRI, looks rather medieval. Thanks for reassuring me about bringing my own mask for this plastic cage frame, which must be the same device the nurse referred to as the "brain mask". I only ever had one MRI before, can't even remember the procedure, for it was my spine. I was still in disbelief this was all happening back then, in the denial phase. Like Rosie said, I probably blocked it out as well..
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Tinkerbell, this plastic face cage thing is similar to what my hospital uses and I always wear the blue medical mask given to me upon entry. You’ll also have ear plugs for the loud noises and some cushions around the sides to keep you snug.
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Tinkerbell, I had a brain MRI last year after reporting headaches and memory issues (probably due to anxiety/stress). The imaging center here does not use a brain mask. Clearly, the nurse mentioned it to you, so they must use one there.
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Tinkerbell, I had a brain mri because follow-up mri of my spine suspected lp disease, it was scheduled for me as stat within a day or two, it is not standard procedure but it is always better to keep the safe side though.
ladies gave you best advice but here is My tip: I closed my eyes before technician put the cage on my face, and tried to imagine a beautiful place I’d love to go some day! They will provide you a safe mask (without metal), (I always ask for mask!), a pair of ear plugs, and a headphone, it took 45 minutes. and of course you can breath normally. Good luck with the good results.0 -
Tinkerbell, I’ve never had a brain MRI. I’m glad some of the ladies have let you know what to expect. That way I can also know if I ever have one. I’m sure you’ll let us know how it goes.
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Tinkerbell, I had a brain mri last July when I was diagnosed. I was anxious about having it so my doctor prescribed Ativan. It really helped me relax. I hope everything goes well for you. Denis
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Thanks everyone with your replies re the Brain MRI. Appreciate the visual Illmae. Hopefully the facility utilizes the same. I have Ativan on hand perhaps it’s a good idea to take it. My MO gave Ativan for my sleep difficulties but been reluctant to take it. So I will call and make the appointment.
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So far the six bone mets I have (typical places) are currently not active. I am taking 100 mg Verzenio and I am starting to feel like my old self. I no longer have to take my daily afternoon nap. I am working on losing weight - 210 pounds after I stressed upon hearing I have cancer January 2020 to current weight of 191. Have 40 more pounds to lose to look great. I just wanted to share that I have worked hard to eliminate stress in my life, as I feel that might have brought on the MBC. I really am happy! Most of us don't share these words, but I am embracing my retired life, I am loving my life. I am sad that my MO says that I have about 9 years (at least) to live, but I am currently 63, and that means I have 9 years to enjoy my life. I realize I am very lucky because my tumor markers have never been higher than 26. I might have caught the MBC early. The original tumor seems to be shrinking and I am almost free of estrogen due to the hormone therapy Ibrance and now Verzenio)
I have my blood checked monthly, and have a bone scan every 3 months. My MO says I will have a CT scan in a few months. Anyone else finding a way to embrace the life we have? The way I look at it is we didn't suddenly die in a car crash. We have time to enjoy, time to prepare financial arrangements for my husband, time to love my little dog and walk with her in our wooded park, time to thank the Lord for giving me cancer so I could end the toxic relationship with a family member. "Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths." - Proverbs 3:5-6 . I took care of this person for 9 years, visiting every weekend, even though I had so much to do at home and the person constantly picked on me. The person got mad at me in July 2020 and has not seen me since. Even moved to another state so a sibling can takeover care. I NEVER would have had the nerve to walk away from that person. But now my stress level is gone. I am losing weight. I am not a super religious person, but the cancer empowered me to move on and say thank you. Thank you for having this person leave and giving me back my life!0 -
Woodlands, yes! I appreciate your post and can relate. I am enjoying and embracing life.
I, like you, am fortunate that the MBC and the treatments are not effecting me much right now or getting in the way and I am going to savor every single day, minute, month year, etc that I have left.
I am in your age group & it is, I think, easier at this stage of life to come to terms with what could be a shortened life span. I have already outlived, in terms of the ages they died at, my father and two of my grandparents and none of them had cancer, so...nothing is promised to any of us. but I am not going to feel sorry for myself and I am not going to "put one foot in the grave any sooner than I have to" (Thank you to Caryn/exbrnxgrl on this board for that second quote.)
Grateful for every good day and enjoying them all, even the routine and mundane ones.
I am also back on my healthy eating and exercise program, have lost 7 pounds in the past couple of months, hope my cardiologist notices when I see him in Feb - I want a gold star! :-)
My eco-cardiogram and PET/CT scan will be coming up soon and of course that is always cause for anxiety, but whatever the result, I still have a lot of living to do, I am sure.
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Tinkerbell, hope your brain MRI goes well and the result is a good one for you. I have had two and they're aren't what I'd call pleasant, however, I survived them both. Relax and pretend you're somewhere else, is the best advice I can give, and if it takes ativan to help you do that, so be it. Also, one of those MRIs was at the beginning of my treatment but it wasn't exactly "routine" - I had some issues that might have been symptomatic so I got a bit pushy about having one when my MO revealed that HER2+ cancer "likes" to travel to the brain. If I did not push, I would not have gotten the referral for it.
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Olma, HER2 likes the brain are the exact words my MO used too. What a coincidence, unless yours is Murthy at MDA.
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no, girl, I’m in the New York area, never been to MDA.
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Genetic counselor just called to tell me that my 10% chance of coming up BRCA positive.... came up positive for BRCA1. I told her that was somewhat reassuring to know that it wasn't some other fault or that belief we all have that it was something I had done, etc. Still sucks though, now I have to tell parents and family so they can get tested.
Any positives anyone can think of for this?
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SondraF - while it isn't 'good' news, it's 'good to know' news. Your relatives - and their doctors - will have the benefit of knowledge you didn't have, and will be able to make detection/treatment decisions based on that knowledge. They are no longer in the 10% category. If it were me, I'd rather know.
Using myself as an example, I would not have gone on HRT after my hysterectomy, if I had had that kind of information.
Note: I was 'low risk', according to any health questionnaires, and I 'did all the right things'. Without a crystal ball, there was no reason to believe I wouldn't be like the thousands upon thousands of women who successfully use HRT. I've since learned I don't show any known genetic mutations. I don't second guess my decision (with the same info, I'd make it again), or feel guilty or responsible... just unlucky.
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Sondra; The good news with BRCA1, is that you may have other treatment options, Lynparza(olaparib). I was looking into this PARP inhibitor, for several mutations that came up on my Foundation One report.
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Sondra, just popping in to say good luck with telling the family. I don’t have any advice, but I’m thinking of you.
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Just to update I was lucky, not sure if that is the right word, lol, to have my MRI of the brain today. I was surprised there was an opening so quickly. I was amazed how easy this was, and quick, approximate 40 min. The brain mask, was like the picture Illmae showed earlier, a plastic cage @ my head. Plus I received a mask and headphones listening to the 80s. I received a copy of my disk and hour later, here I am drinking water to rid contrast.. More than likely I should receive results on Monday.. Hope everyone has a nice weekend...
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Glad to hear it wasn’t too much an ordeal for you, Tinkerbell. Sending positive vibes for a good result x
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I ditto what Olma said, Tinkerbell. I hope for good results.
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Tinkerbell, glad to hear you handled it so well, I know it can be scary. Sending you good vibes for results that find nothing.
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Thanks everyone for your support. I’m still in shock re my results. Another rare diagnosis. I have a benign brain tumor. “Vestibular Schwannoma”. My MO is referring me for an audiology and ENT consults.
Thankfully this is benign. However I may need surgery or GK. This was causing the headaches and tinnitus.
Since having MBC I’m really in tune with my body. Actually I’m shocked to find out some things are not always related to MBC, which is a good reprieve but nevertheless something else to deal with it....
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Tinkerbell, yay for benign. I’ve had gamma knife 5 times and a craniotomy last year, happy to answer any questions, if you go that route.
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Tinkerbell, so glad it’s benign, but what a pain in the ass to have to deal with more. Hugs to you.
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Thanks. At this point I’m hoping for watch and wait for this benign tumor unless my symptoms worsen. I have a hearing test and ENT appointment on 2-25. So illmae I’ll be reaching out to you if GK is recommended.I do not want surgery.
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Tinkerbell, so sorry you're having to deal with this on top of everything else. My sister had surgery for that (hers was called acoustic neuroma)...about 20 years ago, so I'd expect there to be more treatment options by now. I was overseas at the time, so I don't have remember the details, but I can ask her for more information if you end up going that way.
I hope your ENT has good news. If wait and see is the response, I would ask whether any related hearing loss will be reversible. In my sister's case, it was not.
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