Best Of
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.
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Re: Can we have a forum for "older" people with bc?
Let's bump this. I, too, am senior. I was diagnosed in October 2008, operated on December 2008 and turned 62 in January.
My primary care seems to think because I am 62 I shouldn't miss my breasts. Its not like I'm looking for a relationship (I am). I am over 50 and I won't be breastfeeding any babies (so what). I felt like asking him should we take his testicles off since he's over 50?
I didn't think I would miss those old saggy girls but I do and I want perky ones back!
kmccraw423
Re: Brain Mets Sisters
Good morning everyone, Mr. Igloo's wife. I wanted to thank this board for existing and providing us with good news in light of a very dark situation. When my oncologist dropped the news about my brain mets, she said the prognosis was two years. However, I achieved PCR, have no mets neck down, and am asymptomatic. We are frustrated she gave me such a dire timeline when I have read many uplifting stories of women who lived years with brain mets. We are excited to see what Sloan Kettering and MD Anderson have to say and hope to add positive news moving forward.
Re: De Novo Stage IV
Good news for me!
Dec 12 was the start of my 22nd year as a metavivor! I didn't announce it on the 12th since I was waiting to find out the results of my latest CT scan. I had a highly suspicious spot in my lung, but now the spot is almost gone. So it isn't cancer. I do have a new 7mm spot beside my heart, but it is probably nothing.
I pray that everyone else is doing okay!
denny123
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
That I cannot be responsible for everyone else's response to my diagnosis. I needed to figure out how I felt at first before I could "help" anyone else. It's like I felt guilty that I had cancer and now it was affecting everyone that I loved. Put yourself and your feelings first in this.
kotchaj
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
@kotchaj If I could upvote that comment 100 times I would. People have all sorts of emotional defences, and other people's reactions are more about them than the patient a lot of the time.
This has been a very recent diagnosis process for me. But if I could go back a couple of months, I would have told myself to buckle a seatbelt, because the rollercoaster is getting ready to go, with many, many appointments, and ups and downs.
I can't remember the last time I was this busy. There's so much to keep track of, so much more information available than I could ever absorb at once. Taking in all the new medical information is like trying to drink a river through a straw. I have calendars and planners everywhere now.
My best advice in the first few weeks is to take a breather whenever possible. Log off, take a walk, keep pursuing a hobby, and focus on self-care (eat right, get enough sleep and exercise). It's gruelling.
doodler