Best Of
20 years and still around
Am posting after a long gap. Want to let you all know that I had my recent Pet scan this week and got all clear.
My first diagnosis was in 2004 and recurrence in 2021. I am on my 29th cycle of Fulvestrant and Ibrance. In December 2021. I had mets in spine, lungs, liver adrenal glands, chest walls. My latest scan this week showed complete resolution and complete response to treatment.
So there is always hope..
Re: What do you wish you had known when you (or your loved one) were first diagnosed?
When I received this unexpected diagnosis, my instinct was to panic…and I did, briefly. To that we are entitled. However, I immediately made an appt with my internist who recommended a surgeon, who, in turn, recommended an oncologist. This happened over the Thanksgiving/Christmas holiday, so had to play the 'waiting game' a lot. I shared my diagnosis with good friends who offered immeasureable support. I studied my diagnosis and read papers in my free time and this helped me to ask the right questions (for me) to the various docs. I joined this BCO site and it was incredibly helpful and supportive. In hindsight, everything came together as it should have and I can honestly say that I have no regrets regarding any of the decisions I made…some of which the docs questioned, but ultimately supported. My advice...you WILL feel overwhelmed and out of control, but try to step back, make a plan, don't be afraid to lean on others, educate yourself to where you do have a basic understanding of what you will be going through (this site was very helpful with that), because you will be asked to make decisions about something very new to you. I am now facing a new cancer diagnosis (colon) and am finding that my BC experience has prepared me well.
murfy
Re: Stage III Cancer Survivors...15+ years and out
Hello lovely ladies,
I am now out 19 years form a nasty invasive Stage IIIC Hr/PR neg her2 pos BC lots of nodes and invasion to ducts, lobes nipple , lymph, vascular and a bit of chest wall!!
I use to come on these boards daily back in the early days for hope an information.
We've come a long way.
Wishing you all a gentle ride on the BC road
lkc
Re: Bilateral Mastectomy Club
I had a double mastectomy on the same day as flowergirl - May 31, 2023. I remember we were talking on this site around that time - nice to see you again! I had a small complication from surgery (a hematoma), but it was fixed quickly and I haven't had any further issues. I didn't have any reconstruction and I don't want it, so I don't have any plans to see my BS again - though she is great.
For anyone interested, I'm super-happy with my decision not to reconstruct. I mostly just go flat, and shockingly to me, most people don't even notice (I was DD before). I love not having boobs - I can jump and run and there's no bouncing or need for a bra. I can now wear all those flowy summer shirts that only women who don't need bras can wear! And if I want to look like I have boobs for a particular outfit, I can always wear fake ones. It's rather awesome!
devoinaz
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