Macrometastasis and Age at Diagnosis

Wow! you have been through a lot.❣️ I am glad you finally got in and addressed this thing. The reason the prognosis is a little different if you were diagnosed young (typically classified as 40 and under) is that sometime the younger women get more aggressive cancers. You having a grade 2 cancer is actually a pretty good sign for prognosis. (Less cells growing at any given moment)
A little bit of my story is that I was diagnosed in my 30s and my cancer was very aggressive. I let my lump slide 6 months and it turned into a large golf ball sticking out from my chest wall. When life is hard I have a tendency to pretend that it isn’t real, like my old farm grandma taught me.😂
All of that is an explanation of statistics and why my situation was similar but it does not mean yours will act as mine did. Our cancers are very different. Everyone’s has a different cancer and a different story.
You were diagnosed two years ago, what kind of treatment plan did you have?
Has there been any signs of recurrence? What makes you search for prognostics now?

I declined radiation and after a Mammaprint test, it was determined that chemo wouldn't be beneficial. I started on Tamoxifen 20mg, but have had to cut back to 10mg due to side effects. The fatigue from it is really debilitating. I'm hoping to stick with it though, because I do not want to have to try an AI.

When I was first diagnosed, I was kind of paralyzed with fear. I had a diagnosis, two biopsies, and surgery in less than 3 weeks. I didn't have time to research. I left most of that to my husband, since research is his specialty and he was super-supportive. Every once in awhile, I get a new ache or pain that causes me to wonder if it is the start of a recurrence, prompting me to do more research. A week or so ago, I thought I felt a swollen lymph node, and that sent me on another researching kick. Paranoia is an amazing thing! 🙂

I appreciated your story of also delaying your diagnosis. How long ago was your diagnosis? Had the cancer reached your lymph nodes by the time you went in? And if so, have you had a recurrence? Where are you in your journey?

I am just short of 20 years into survivorship. Yes, unfortunately my delays might have hurt more than I hoped. I had my first relapse in just over a year, which turned out to be a silver lining because herceptin was not available for frontline therapy but the first relapse brought me that treatment. I currently have minimal residual disease after my last round of treatments. Mostly I feel pretty good right now. I have a little less energy than I had a year ago, but I am working hard to build strength and endurance again.
How long has it been since you were diagnosed?

My diagnosis came two years ago this month. (My 2-yr checkup is coming up very shortly.) I didn't have any BRCA gene mutations and no family history. How about you? With an early aggressive cancer like yours, did you have a genetic predisposition or relatives with cancer? Or do you now?

If I reach the 5-year milestone with no recurrence, will the oncologist continue yearly checkups each year, or do they discontinue that and assume you're good to go unless you report something to your PCP after the 5 year mark?

I don’t really know the answer to the 5 year thing. I think that may depend on each specific case and each doctor as well. Doctors are in short supply around here so if you aren’t in active treatment, it is sometimes easier to see the PC.
I have mutations coming from both sides of my family, I am currently one of two remaining survivors of my family. I have a half brother who has also managed to survive a couple types of cancer so far. Neither of us were blessed with children, so we are the last of the line. Most of my family members that I know of died from cancer. Mostly under the age of 50 and some very young, so I consider myself lucky.
I found that walking helped me through the 5 years of tamoxifen and 10 years of Anastrazole. I also found that taking them at night helped with the fatigue.
I am crossing my fingers and my toes for your upcoming check up. Have you tried any other ways to mediate the side effects?

Like you, I have found that taking the tamoxifen at night has helped the fatigue. I get nausea from it a few hours after I take it, so it is better to sleep through it than try to manage that during the day. I have noticed what seems like a 2-3 month cycle with the tamoxifen. Once every 2-3 months, I will experience a 7-10 day "tamoxifen trough" (at least that is what I call it), where I need extra sleep, have some brain fog, and can't seem to find the energy to do anything. Walking is good and helpful. I tried caffeinated tea for awhile as an energy boost, but the caffeine has other negative side effects for me. I take extra magnesium to moderate the leg cramps. I'm just hoping I can stay on the tamoxifen for the remaining 3 years. What was your dose of tamoxifen when you were on it? Were you able to take the 20mg or did you go lower? (I'm on 10mg right now.)

I stayed on 20, but it wasn’t always easy. I will admit to struggling mightily at times. Legs zinging at night, muscle cramps, and fatigue are all real. I was blessed to have a job where at least some of the time I could adjust my duties by working from home or other types of schedule adjustments, when things were at the worst. Like you, I found cycles, most of the time I could manage, but there would be times when things were harder.
I had hot flashes that would start almost like a seizure, where my brain kind of glassed over, I still occasionally have these, but much less often.
Have you identified ways that you can adjust around some of the troughs?

Wow, your hot flashes sounded terrible! (Hugs!) I've had a few, but certainly not to the degree that you described. I am blessed to work from home and have a place to lie down a short distance from my computer. (Cell phones make checking in on business problems so much easier than it was years ago.) I'm hoping for a day when there is an obvious cure so women don't have to endure all of the hormone blockers and when we can finally say that we have stopped this beast called cancer. May we all live to see that day!

I admire you all very much. I’ve taken AI and lasted a week - effects of sudden and severe menopause were evident within mere days. Poor sleep, drenching night sweats, joint aches, fatigue. I’m raising two very young children. I just couldn’t function so I stopped. Then tried Tamoxifen. Still night sweats and there goes my sleep. Irritated all day and felt like worst mom ever. I’m truly debating stopping all treatment. I know that’s NOT the ideal answer….

I'm so sorry to hear of your struggles with the hormone blockers. Like you, I have weighed stopping tamoxifen (and never going on AI's in the first place). Did you have an Oncotype or MammaPrint test to determine your risk of recurrence?

Do you do any regular exercise? I walk for 20 minutes every morning, and it takes the edge off of the aches and pains, enough to get me moving. In your situation, I know that having young children to watch probably makes that really difficult, though.