Best Of
Re: Life does not end with a stage IV diagnosis (really!)
Thanks so much for asking the question about enjoyable activities. It's great to read what everyone is doing. I find that having a daily schedule of things I enjoy is helpful for me. I am retired and my children are grown with their own lives, so the schedule lives only in my head and can be modified in an instant, but it gives me something to cling to on the days when I'm at loose ends.
First thing every morning I have several cups of coffee while I read through emails and visit BCO to see what's up. I then read for 30-45 minutes, as books are a great escape. After breakfast I ride a stationary bike for 45 minutes while reading on my kindle propped on the front. At some point every afternoon I will knit, as I find the rhythm and repetition very soothing. When weather permits, I take a 2-3 mile afternoon walk on a local trail, as trees are comforting.
On a larger scale, I am on a 6 month scan schedule since my Stage IV diagnosis about 20 months ago, so each time I get the "all clear", I book trips and buy theater tickets, as travel and theater are two things I love to do. Having things to look forward to keeps my mind away from the dark places.
I've always disliked the phrase "You only live once." Not true. You only die once, but until then, you live many times. I intend to live the hell out of every day until the inevitable and I wish the same for all of you.
Eleanora
eleanora
Re: Upset at myself
lexierose,
I second what the previous posts have said. I was also stage IV de novo with a bone met. I had a clear mammogram only 13 months earlier. Nothing I did or didn’t do affected /caused this. While I do understand why you would feel guilty there is simply no way of knowing if things would have played out any differently, period, full stop. Although not typical, I have had 12 progression free years since dx and over the course of those 12 years, I have seen many stage IV members do surprisingly well. So many new treatments have become available and more are in the pipeline.
Please, please seek counseling and possibly medication to help you through this rough initial period. Panic attacks, depression, etc. are not uncommon and there is no need to tough it out when help is available! You are worried about your bc’s effect on your family so please seek appropriate help because although it’s challenging, you don’t want to stick your foot in the grave well before you have to. No one has a crystal ball but don’t let your family lose you now! Your oncologist or a social worker at your medical facility may be able to put you in touch with a therapist or psychiatrist who specializes in working with cancer patients and they can be a godsend. Take care
Re: Life does not end with a stage IV diagnosis (really!)
I found some joy last week. My nephew visited and we went to the museum, parks , and watched paw patrol
Re: Life does not end with a stage IV diagnosis (really!)
I got a little bit of good news Friday. I had my monthly check up, labs and Fulvestrant injection. I asked about tumor markers and they have dropped since December, and are in the single digits as of this last labwork. I know that markers aren't a be-all, end-all revelatory sign that I'm responding to tx, and that they bounce around a bit, but it really gave me a boost of hope. The rest of my CBC panel was "perfect" as well, the NP told me.
Claire in AZ
Re: Diagnosed with DCIS after first mammogram. 32 yrs old.
Hi Bailey. I was diagnosed with stage 1 IDC ER/PR + breast cancer 10/22 at the age of 44 and had a double mastectomy 3 weeks later. They gave me the option of lumpectomy with radiation and tamoxifen and monitoring with MRIs and mammograms every 6 months for years to come or a mastectomy with no radiation needed but still having to take the tamoxifen for 5 years. I can not comment on the motherhood aspect of your post as I have no children and can not. What I can say is that when I was diagnosed and had to make a very fast decision about what I should do I had a gut feeling that I should have a double mastectomy. The reason I chose that was that I could not handle any more of the stress of going every 6 months wondering " what will they find now?" I have a strong family history and have been getting mammograms and MRIs since my early 30s and mentally it is draining always wondering "what if they find something?" Almost every imaging they found something suspicious and I went through ultrasounds and biopsies over the years multiple times. It was very difficult always wondering if finally this is the time it is cancer. And my last biopsy it was. I 100 percent know I made the right decision for myself. They found 2 more areas of cancer in the tissue they sent from by breast after surgery that were not picked up in my imaging. If I had done the lumpectomy I would still have cancer most likely. I know you are in a different situation and it is such good news that it is stage 0. All I can say is go with your gut. Whatever you do will be the right decision. There are no wrong decisions with these things. I am currently healing from my breast implants being placed a couple weeks ago after my double mastectomy with expanders. I can't say it hasn't been hard but I now look at myself in the mirror and see a different person but I tell myself " you are alive!" and in the end that is what really matters, right? Let me know if you have any questions about mastectomies with reconstruction.
rnjen
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
That I finally understand what one day at a time means. That I have an incredible support system and so many friends and family that love me. That this is just a poopy way to start a new year. That this time next year I’ll be back to my usual nerdy go lucky happy self. That I self medicate with knowledge (I have too many great friends and two sorority sisters who all survived and thrived after breast cancer).
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
I wish I had known that mammograms are not best preventative screenings for women with very dense breast tissue and that once I was told I did, I should have insisted on ultrasounds.
I was fanatical about getting my annual mammogram. September 2022 mammo showed no indications of cancer. September 2023 mammo with results followed by an ultrasound showing three tumors, too large for lumpectomies. I have a suspicion that an ultrasound in 2022 (or previously) would/could have caught something earlier.
I now let anyone who asks know that if they have very dense breast tissue (like my sisters and cousins all do and my grandmother did) to ask/demand ultrasounds instead of, or in addition to, the mammograms.
I am grateful the cancer was caught fairly early and my prognosis is good. I am also grateful for the wonderful family and friend support, and for this website/community.
dm8521
Re: Bone Mets Thread
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.
sf-cakes
14 years out!
hello sisters,
this site helped me so much when I was going through treatment. Just wanted to come here and post that yesterday marked my 14 years of surviving stage 3a. i have five pos nodes, one with extranodal extension. did chemo, radiation, bilat mastectomy, and also oopherectomy. still taking letrozole. currently NED. at diagnosis i was 44, and i prayed daily to live to 50 and see my children through their childhoods. am now 58 and going strong. the fear has receded for me. there is hope!!
chrishat
Re: Bone Mets Thread
rk and mods, thank you for the condolences. My brother is a decade older than I am, and his son, who was my parents’ first grandchild, was in his early 50s. He was a traveling nurse and fabulous photographer. Out of the blue, he was diagnosed with stage iv melanoma in October and died less than three months later. The aggressiveness of the disease was horrifying and unrelenting. It’s hard to process it all.
*
*
