Bone Mets Thread
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katyblu, let me say I’m very impressed that you had both legs done at the same time and are already home and walking! Even if it is very slow, it is impressive! Like rk said, I think your younger age (aren’t you in your 40s?) is to your benefit.
Do be very kind and patient with yourself! I’m not sure who you feel you’re being a burden to, but please do not view yourself that way! Practice loving kindness towards yourself. I’m sure those who are helping you do not see you as a burden. We should not punish ourselves because we have physical limitations. It is time to kick back into low gear and give yourself time to heal. I allow myself to binge watch a few good streaming shows, listen to my favorite music, read some best sellers. I try not to fight the down time. For me, it is still not as bad as the pandemic lock down.
I understand the whirlwind part, my surgery came about unexpected and was like that, too. It did take awhile to process it all. And my surgery gave me similar thoughts about end of life. Parts of that I’m still processing. But please know we are not and have not wasted our lives! I’ve always reassessed my life from time to time to make adjustments, shed what’s no longer working and seek more of what I really want. We all go through so many different seasons in life, and this is one of many. Every season has importance and makes us who we are.
As for recovery time, sure, you are weight bearing, but I’ve read healing can take three to six months. I am hoping the hardest part with this surgery is behind you, and that gradually you will feel better every week. Take extra good care of yourself! Sending lots of hugs your way!
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Rk, the mods, and divine- thank you so much for validating all the feels I am having. Yes I’m only 43, so I hope being younger and in general good shape will help with healing. My biggest thing is wondering whether this is apex of how good I’ll feel and how much mobility I’ll have. If it is, then I feel like I missed out on so much. But if it’s not quite the peak, then I have so many things I really want to do.
I also need to learn to give myself grace. It’s hard for me, as I was a very hard charger in life before this dx. And I know my husband is always by my side, he is my rock. I’m just afraid of putting too much on him. He did help me shower today, which felt amazing. I think moving forward, I’ll just where my body takes me. Thank you all again!
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@divinemrsm Thank you for sharing those wise words. I know they were meant for Katyblu but I needed to hear them too. Good night everyone.
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@amel_83 Hi gal. I didn't want your post to slip by unnoticed. Wish I could be of more help, but I was not on any of those treatments. It's understanding you are upset. I hope a poster comes along with input that can put you more at ease. Best wishes for a successful treatment plan to take care of those bone mets.
@katyblu, Wow that is a stunner that they moved so quickly to surgery. From everything I've read it's better to be on top of it, then have a fracture (or two) that is difficult to operate on. Gosh you are a year younger then my DD, and it's difficult to hear you fighting for your health. But you are young, you've had some military training (yes?) and so in better health to fight. I'm so glad your husband is with you to urge you on and lift up your spirits. You'll get back to your normal before you know it.
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Oof katyblu- both legs! Yikes, I’m 3 years older so I get feeling like is this my life? When I take my kids to their school things I often get a pang of sadness. I don’t feel like I did before the surgery (very active) but I’m definitely walking decent distances, driving and doing lots of stuff- it’s been nearly a year. I don’t like my gait but I’m not sure if it would be noticed by others and I don’t think about it much now. My sister in law had both legs done together when she was in her 30s and she goes hiking and is very active so give it time. Get a seat for the shower, kitchen and toilet if you haven’t already. I also liked a special cushion for my legs in bed that stopped the sheets pulling my feet and stopped any movement. I had a recliner chair that stands you up which was brilliant for the first few months. You probably have everything already but just in case… I feel awful for you, and I hope you have a smooth recovery x
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@katyblu i was just mulling over what you wrote about your stay in hospital. The day of my surgery was one of the lowest of my life. I never wanted anyone to help with my personal care and I felt like I was too vulnerable and lost my dignity a bit. Although it’s a slow recovery, it’s also fast, little by little you do more and then in a year you’ll be telling others your story!
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@irishlove thank you for your words and @katyblu@Katy best wishes for the surgery and recovery!
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Hello girls 🙂.
My mother today was diagnosed with MBC to her spine and hips. I read on the web that life expectancy is 19 to 25 months. Is that true? Sounds so little. I read some of your stories and I see that many of you have already live much longer.
My mother soon will be 76. I love her so much, and she is so though and powerful, she is not crying or anything, but know deep inside she very sad. I don't want to cry in front of her because I make her more sad.
What is the most that someone can live with this? Forgive my English, am greek.
Thank you in advance 🙂
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tsiutsiu,
Please see my response in one of the two other threads you started. All recent posts are visible to everyone in active topics. Take care
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@tsiutsiu Life expectancy is almost impossible to predict. From my experience, 19-25 months seems like a low estimate but I’m also not privy to the particular characteristics of your mom’s cancer. Adding a signature can help others provide better feedback. Treatment choices are based on the sub-type of her cancer. This can be found in her pathology report. It will tell you if she is hormone positive or not, if she is HER2+ and likely include a grade on how aggressive they believe the cancer is. Another factor impacting overall survivor is your mom’s overall health and how she tolerates treatments.
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@tsiutsiu I just lost my comment but will try again. Do NOT trust Dr. Google. He's not a real doctor. I'm sorry you and your mom are in this place.
If you want, check out my blog. One of my first posts (Roller Coasters and Thrill Rides) talks about my experience with being newly diagnosed with Stage IV Breas Cancer. I think you can copy and paste the link in my bio or signature line below.
If not, it's
Love and hugs,
Carol
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Mods, if I've broken a rule by posting a link to my blog, please let me know. I'll delete the link.
Carol
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Tsiutsiu - When I saw my oncologist last month, somehow the issue of survival rate came up (can't remember why) and he said that the current overall average is 3.5 - 5.0 years. That was higher than what I'd previously read. I don't know where his data came from, and again it was a general statistical average, and like many others have pointed out there are so many varying factors to consider, that no number can predict just what will happen to any one individual. Like so many say, in the end it appears to be chance that determines most all of this, i.e it's a crap shoot.
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sunshine/carol,
The stats regarding survival can be trusted as they are a historical record of the length of survival of a given group of patients. Patients were diagnosed, treated, and followed until they passed. But the thing to remember is that they are not predictive of how any given individual will do. Not a single thing in these longitudinal studies has predictive value, only historical. Additionally, since they are longitudinal, they usually don’t take into account treatments or protocols developed over that long period of time. As an historical record they are quite accurate but have no predictive value. This is often misunderstood. For example, if 25% of those with low volume bone mets survived after being treated with XYZ, that does not mean that you have a 25% chance of survival with the same treatment.
Where Dr. Google becomes untrustworthy is with respect to googling symptoms (everything is usually BAD!) , leading to self diagnosis, reading about horrible treatments and side effects, etc. Bottom line is that no one has a crystal ball and an historical statistics based on longitudinal studies predicts nothing about how any given individual will do. Here I am, 12 years after my mbc dx, on no meds at all, and still kicking! Who would have imagined that?
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I’d also like to re-introduce myself as I have not participated in the bone mets thread for many years. Here’s the short version:
2011- bilateral mx, path report says stage IIB, one positive sentinel node.
About 4 weeks after that, had surgery to remove left nipple (bmx was originally skin and nipple sparing) and install port.
While being screened for clinical trial (HER2 low) fluid found around heart. PET shows fluid is of no concern but… what is that spot on my upper femur?
Meanwhile , lung collapses over the course of two weeks due to nicked lung during port installation (chances of this? Less than 1%!)
Spent a week in hospital getting lung to re inflate, chest tube had to be inserted 3x! The insertion in the ER was more painful than natural childbirth.
Once recovered I had a biopsy of the spot on my femur. Bingo! A complete twin to my breast tumor. Hello stage IV and no, this was not progression from IIB as the lesion was already 2cm but only grade 1.
Chemo cancelled. New plan is rads to bone met and an AI. That’s it!
Fast forward 12 years. No progression at all. Side effects from AIs got worse and worse so mo gave me the choice to stop and I did.
Clearly not the typical path for mbc or bone mets yet here I am. I follow no diets, regimens, protocols, or supplementation. I do have a very diminished appetite and am trying not to lose more weight so while generally healthy, I eat whatever appeals to me. The only explanation for my longevity without progression is luck at this point but I hope someday more is found out so it can help others.
For those I know, I cautiously dip my toe back into this thread. For those who are newer, glad to meet you!
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I feel terrible for the women here diagnosed with mbc in their late 30s and 40s. It just sucks. I can imagine the frustration at life taking such an unexpected turn at your age, especially if you’d been going full speed ahead. And I don’t want to diminish what your husbands and loved ones are experiencing, either. It is a lot and it is unfair to all of you! I guess at such a time, we have to regroup and reprioritize. One thing I kept thinking about in the first weeks after my leg surgery was of an acquaintance of mine who’d fallen down steps outside her church and broke both arms plus other injuries. Well, not to get too graphic, but just imagine not being able to wipe yourself! So I guess sometimes it helps me to remember things could be worse. (She had a long road to recovery and is doing pretty good these days.)
tsuitsui, I’m sorry about your mom’s diagnosis. After my doctor gave me a diagnosis of bone mets and said that with treatment I could live years, the first words out of my mouth were “Define YEARS”. She gave me an open-ended response, would not be specific, and I always loved her for that. I’ve since learned to be more present-minded, try to stay in the moment and live the fullness of one day, then do that again the next day and try not to project myself into a far off, unknown future. Not always easy, but it helps. I wish your mom and you the best.
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Divinemrsm - you have a very kind way of expressing yourself.
I have 4 school kids, my youngest was 2 (now 10) when I was first diagnosed and I don’t think any of them actually remember me pre cancer. Financially the Mets were a bummer, I had just returned to full time work and we had some good money at last but that didn’t last long!
When I go to school events I always get a little off hoping I will be able to see them graduate and be a proud mum like the others but like you said, we have to live in the day. That’s the best advice. I have to keep reminding myself that! And I guess I try to be grateful- things could be a lot worse- your friend has my sympathy!
xbrnxgrl - thanks for your story, I found that fascinating - especially that you’re off meds and doing so well.
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Every time I read your post ladies I feel strong to fight for my live and my daughter. I’m only 33years old. I’m depressed and sincerely I want to give up and say bye to my live. I never meet a young women in my age get 2-3years
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@fighter00 I hate that you’re going through this. How old is your daughter? There might be a thread on this site for young parents that would help you find people in your position.
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@fighter00 I just saw in one of my Facebook groups a group that might work for you. If you have Facebook, you may want to join. I’m sorry for what you’re going through. It’s called “Momming with mets support.” If you search for it, maybe you can see it and join. You will have many women in your age group to support you.
Also, breastcancer.org has a Zoom meeting for women who are younger. If you’d like the information to sign up for that, let me know.
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@margesimpson I hate myself. She is only 11. I can’t imagine her life without me
@kbl i gonna try if I find the facebook group. Thank you so much
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Hello lovely friends, quick update:
My thoracic posterior instrumentation surgery went well with no complications, and the surgeon decided not to complete a laminectomy at T9 (the compressed vertebrae) when he got in there, felt the screws and rods from T7 to T11 were more than sufficient. He said the screws "grabbed well" which meant those vertebrae bones were in good shape - if they hadn't, he would have added some cement to keep the screws in place. A neurophysiologist monitored my nerves the whole time with acupuncture-like needles under my skin - these were placed after I was under anesthesia so I didn't see them. Spent only one night in the hospital, and the surgery was about 2.5 hours. Threw up twice the first night but that was it, and didn't feel nauseated other than those very brief episodes. Was up and walking in about two hours.
I looked at the xrays taken the following morning, and I kind of look like Wolverine now, on xray...I choose to be amused by this.
I am having some pain (it's only day 2) but it's largely emanating from the surgical site where they cut into me, and dilaudid is keeping the pain at a minimum. Having antibiotics, steroids, anti nausea meds, laxatives, and pain meds all coursing through my body is not enjoyable at this moment, but those are all temporary. The next month will be restricted movement, no bending, no lifting more than 5-10 pounds, and no twisting. So slow, gentle, correct healing to keep the spine in a neutral and healthy position.
Will keep you in the loop about the healing process, it is sort of an amazing surgery really, with the goal of spine stabilization and mitigating any risk that the compression, due to bone met, won't ultimately protrude into the spinal canal.
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Sf-cakes - that’s great you’re out, I was googling and I’m quite amazed at what they do and the recovery time. I’d love it if you kept us updated about your recovery.
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Sf-cakes.
So glad surgery went well. Best wishes for continued luck healing.
Gail
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fighter00, those are some very strong words, to say you hate yourself. I’m so sorry you feel the need to somehow punish yourself with such thoughts. Your body was attacked by a disease over which you did not have control. You are deserving of self compassion and self kindness whether you are healthy or dealing with cancer. I get that you are just new to this diagnosis and it is a shock. We all experience the sadness that comes with that and the transitioning to a new kind of normal. I hope you will talk to your doctor about your feelings. I developed anxiety after I was diagnosed, and my doctor worked with me to find the right antianxiety medicine which made all the difference in the world for me to engage with life again. I eventually started taking a mild antidepressant as well. I think it is okay for us to feel all our feelings, but then take the necessary steps to nudge ourselves to get the right kind of help so that we move forward with a quality of life.
sfcakes, so glad to hear from you and learn that surgery went well! Hopefully the worst of the pain is behind you, and I always feel better when any lingering anesthesia effects dissipate after a couple days. I agree, the surgery sounds amazing. Rrrarrrw! Wolverine! Lol2 -
Sfcakes - So glad to hear that your surgery seems to have gone well! Also glad to see that you have such a good attitude and perspective re things like the nausea, pain, drugs in your body, and recovery time and constraints. This is looking like it will really help down the road and that you made a wise and good choice in deciding to go with the surgery. Congratulations and best wishes for a smooth and speedy recovery.
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@fighter00, we have a wonderful podcast that you might want to listen to if you have a moment. It's called Talking to Children About Metastatic Breast Cancer. This podcast covers topics such as:
- why it’s important to use words like “cancer” and “medicine” when talking to children
- what children of different ages need to know and hear
- how to discuss death with children and how to reassure them that they’ll be taken care of
Listen now or read the transcript. Hope this helps! Sending warm thoughts your way💞
The Mods
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@fighter00 I am also sorry that you are having to deal with this. I agree with what divinemrsm so eloquently said. I hope that you will be able to transition to a new kind of normal.
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