Stage 2 Sisters Club
Comments
-
Katg, your older sister sounds very different from you. I’m sure it’s frustrating to see her make questionable choices related to her health. Denial can be very powerful. And so uninformed about blood clots! I think 30 days post surgery on blood thinning shots for your other sister sounds like a lot, unless she had a history of them. I know that my mom had shots in hospital after intestinal surgery, but nothing upon discharge. She got a DVT and PE after she came home. One difference in her case was she was in her mid 70s and pretty sedentary.
It may take your older sister more time to process the BRCA2 gene reality. For now, I’m glad you are focused on your treatment. That is the best thing you can do.
0 -
sarahmaude. I wanted to tell you that you are so right on what you wrote.
My sister getting the 30 days of shots is one week short of being done and not a minute too soon. It is interesting ho cancer hospitals choose different treatments. Why did the urgent care doctor at the City of Hope prescribed the shot and the Monday MD in the same unit conferred with my MO for the Eliquis pill. I go to google after i get news to see what to expect with the treatment i received.
I do believe if you see something, say something. The Doctors cannot look at what they have prescribed if you do not tell them, you have side effects. I was still telling myself the blood clot was not a big deal when i told the RN on the day i visited the plastics doctor. She and 2 more MD's said it is a big deal. Also, i get to have my unaffected right breast for a bit longer. I was to loose it May 31st. The blood thinner use pushes that out for 3 months or longer.
What we learn on this journey is patience. For test, biopsies, scans and treatments that work to name a few. The time i have sat in urgent care at COH waiting for meds to be ordered and delivered and the time it takes for this doctor to call my doctor. Patience and a phone, table or book for entertainment. People watching works to if you have a good spot in the place.
0 -
Hi All,
Does anyone know the significance of lymphovascular invasion on treatment or prognosis
0 -
Beginagain22, you ask hard questions! I did some quick research, and a recent article says that the answer to your question isn’t settled. This paper: https://www.esmoopen.com/article/S2059-7029(21)00278-7/fulltext found that it is mostly a risk for cases where there isn’t another high risk factor. So they found that for people who are already grade 3 and ER+ or who are Luminal B it doesn’t increase the risk. Likely because they already are classified as higher risk. Sounds like for people with otherwise low risk tumors, LI increases risk of overall survival, disease free survival, and metastatic free survival.
They speculate that there is an OncoType DX mid risk range that might already be getting advice from their MO to do chemo.
An aside, I’ve done a lot of reading lately, and for HR+PR+ cases, estrogen blockers are amazing at preventing recurrences.
0 -
Thanks SarahMaude! The study was very interesting. I went to the RO and radiation is a no go. Happy but she did say I fall into a weird spot with low oncotype, under 50 and grade 3. She also mentioned LVI not being ideal but she felt that the side effects of radiation outweighed the risks. She took my case to her mentor who is at MD Anderson for another look and they concurred. I hadn’t heard anything before about LVI and a search here didn’t turn much up either. So, I will take my Armidex and keep doing cool stuff
0 -
Sounds like a good plan to me! I love to hear oncologists working together on these kinds of decisions. Radiation is not going to be the most enjoyable “sunburn” ever. But I knew with a lumpectomy I’d have it. Now, if I just get my answer on chemo.
Talked to an OncoType rep today and it’s not totally impossible that my report will be ready in time for my scheduled appointment next week. They told me to call back late tomorrow for an update. One thing I can say is I’m very happy with their customer service. They are friendly, and provide as much info as they have, which is better than a lot of companies I’ve encountered. Quite helpful for my current tangled state of mind.0 -
saramaude,
You will feel better once you know that number I think. The not knowing and the waiting is awful. When you know you can research and get your inner nerd on. I always feel better when I am as informed as I possibly can be. Good or bad, I like to know what is likely coming at me. You MO and RO know this and have gone over case studies with me discussing my questions. I have really appreciated it. Although they both look about 19, their enthusiasm and passion for their work is heartening
0 -
Beginagain22, I completely agree that knowing is going to be very helpful for me. My not so inner nerd has me well prepared for any number I see. My oncologists are maybe a little younger than me, but on the more experienced side. I don't think the curious energy I treasure is necessarily an age related thing, but I'm sure with heavy case loads and too much stress, some doctors lose some of theirs. I'm sure the catching up post pandemic is adding to their workload. My RO was right where I needed her when I saw her. The MO is doing everything by the textbook and all best practices. She just seems more time pressured. And I'll have to make sure I'm ready with my questions to ensure I have what I need to feel confident with plans as we go forward.
0 -
Beginagain22. I have lvi. My RO said that is why he recommended radiation. Second opinion from Sloan concurred and also recommended chemo even though my oncotype is considered low by many 15. I wanted to be aggressive so I was happy with that. she said it is showing it wants to spread. My opinion is everyone with impacted nodes has lvi, but they don't always put it on the report. That's how it got to the nodes. I wanted to do radiation because I had 2 impacted nodes and they don't do full node dissection any more. I think it's wrong that lumpectomies automatically get node radiation and mastectomies don't. Doesn't make any sense. You did have more nodes taken than me though. My surgeon refused to take more.
0 -
thanks jrnj,
I find the information interesting
0 -
Beginagain22, after reading a lot lately (have added the book Anticacer by David Servan-Schreiber and Immune by Philipp Dettmef). They both have me thinking a lot about what our tumors that are now gone mean in terms of what they have left behind.
With LVI, I agree with jrnj that it is an indication that the cancer was making headway out of the breast. This cancer beast is so strange. My tumor seemed just keep getting bigger but LVI or node involvement. Others have tiny tumors that build highways to nodes. To me, I think we are all going to have tumor cells forever. That’s why we need to treat per oncology advice, which includes a need to not overtreat and possibly compromise our body’s ability to control future metastasis.
I’m as anti-woo as it gets, but for me, increasing anti cancer foods and habits is now a no brainer. Whatever I can do to make my body hostile to new tumors and my immune system more able to fight is a good choice. I’m making these changes in addition to following medical advice. Eating healthy foods, walking, and balancing stress is good advice for all. The author of Immune sadly passed from his brain tumor 18 years after his diagnosis, but he lived most of that time with energy and empowerment. That’s my goal. So, I’m following my doctors’ directions, who also say walking and losing a few more pounds is smart.And I’m enjoying a bigger variety of fruits and vegetables, win win for me!
By the way, I found out my OncoType score has been sent to my MO. I’ll get it on Tuesday Cue the final Jeopardy music…
0 -
SarahMaude,
I am so glad you will get your score… finally! I have read anti-cancer as well and am also making dietary changes. More vegetables and I am eating walnuts and black rice. Interesting info on those two foods in relation to BC. Check it out. I agree that anything we can do to make our bodies an inhospitable place for cancer is a no brainer. I will break off my love affair with Doritos and Hot Tamales. We were no good together anyway, lol. I left college long ago and it is time to eat like an adult. I am already a bit of a gym rat but I could stand to lose a few pounds. I am sure the diet clean up will help with that. Good luck this week and keep us posted
0 -
beginagain22, I’m actually enjoying grocery shopping. For so long I’ve been shopping to please my picky eater husband and the now adult kids. I actually love most veggies and many fruits.
Last night I made a stir fry with yellow squash, zucchini, sweet onions, garlic, red bell pepper, and baby portabella mushrooms. Had a baked sweet potato and baked salmon with fresh orange and lemon juice along with garlic, salt and pepper. I added agave syrup and cinnamon to my baked potato. Guess what? It was delicious!
Funny though what you said about Doritos. Earlier this weekend I was just remembering all those summers of Doritos and sugary drinks when I never broke a weight 25 lbs below my current weight. I mourn the metabolism of those days.
But, my thought is that right this moment, I feel pretty darn healthy. And with more attention to my eating and exercise, I plan to keep it that way as much as I can.
What do you do at the gym? I have a membership at our YMCA, and don’t go. So shameful.
0 -
SarahMaude,
I start my day at the gym at 5am. I walk 3 miles and the lift weights. It really gives me an energy boost. I have kids at home still so not all of my healthy recipes are appreciated, lol. They have liked the rice tho. I did a stir fry with it and it went over well. I love Mexican food and some of my favorite fajitas are made with portobello mushrooms in place of meat. My oncologist recommended cruciferous vegetables in particular so I am definitely eating more of those
0 -
Beginagain22, I need to figure out how I’m going to get some strength training added. I love to walk and am doing well with that. I’ve done Pilates in the past, but not confident in that after I broke my wrist a few years ago. I may try some gentle yoga and check out some weights. I’ll make that a goal this week. Even if I have to take a break for upcoming treatments, I would like to be ready when I’m healed enough to make that a permanent change.
I like broccoli, cabbage, and broccolini. I’m meh on cauliflower, wary of Brussels sprouts (can’t be overcooked at all), and I don’t know what to do with kale. To me, it’s a garnish I toss. I need to do some more experimentation with ways to prepare.
0 -
SarahMaude,
I like the stir fry vegetable mix already made up in the salad section, they have thinly sliced Brussels sprouts, kale and broccoli all ready to go. Toss them in a pan with about a tsp of heated olive or sesame oil and toss them for 5 minutes. They usually come with a sauce but it has soy and I am trying to avoid that. I add coconut aminos which is similar to a soy sauce taste but has a sweetness too. Super easy and yummy.try planking. It is one of the best weight bearing things you can do. You can do it from your elbows if your wrist is troublesome.
0 -
Check out the 'Lets Post Our Daily Exercise' thread on the Working On Your Fitness Forum. It's a great group of ladies (at all fitness levels). Exercise is more fun (and likely to happen) when you do it with friends.
*Exercise is the most important, biggest non-medical thing we can do to reduce the chance of recurrence (along with reducing the chance of many other medical problems.....and as an added bonus you look & feel better too!).
0 -
Ruthbru, I'll look for that stir fry mix. It sounds yummy! And you are right, exercising with the support of others is more fun and keeps us going. I'll check out that board. I looked a while ago, and you all are a little aspirational! I'm walking for 30-40 minutes every day, which has been huge for me. Only about 2 miles, but I'm walking fast, and there are some good little hills in the route. Pilates worked for me back in the day because it was at the same dance studio where my daughter was a ballet student. I LOVED the teacher. Her playlist alone was worth the ticket price. It was 10 years ago, and I'll say I was able to keep up fairly well, even with the planking. My wrist is maybe strong enough, but it does hurt in a planking position. Can certainly do the elbow version.
Everyone, Along with discovering chemo/no chemo tomorrow, I'll also be getting my first Prolia shot. Yay. With full on osteoporosis at the age of 57 (on my baseline scan), I'm kind of terrified of repeating my mom's hip fracture experience. She was only 71, and she was never the same afterward. That's why I want to figure out some balancing along with the walking and strength. Hoping the gentle yoga will provide some of both.
A quick aside...our BreastCancer.Org Thursday Zoom In Treatment Group turned me onto a hilarious and "real" podcast called Rotten Melons. It's explicit, so if you blush easily, or have small kids make sure you are wearing ear buds. It's a pair of very funny younger-than-me women who have been through BC treatment. They are discussing their experiences, fears, and ongoing effects of their BC. They are labor and delivery nurses, so as you might expect, there are no filters. It's kind of like hanging out with rowdy friends. It has made me laugh, and even tear up at something really nice they shared. Highly recommend! And, it's great for walking if you are by yourself.
0 -
And the breaking news is...I have my OncoType Dx score. It's 49.
Yikes. I was just thinking that I hoped it wouldn't be a 26 or something that gave me any pause about the right direction. So, hooray, I'll be getting chemo. And honestly, hooray, I've got an option for something that can help reduce my risk going forward.So my great big PR- grade 3 tumor is pretty dang likely to want to have a sequel of some sort. I'll get a plan tomorrow for my regime. Anyone else with a score like mine? Sigh. I do feel better knowing today rather than getting "the number" tomorrow.
0 -
Sarah,
Sorry to hear that, hugs! I wish you have a smooth journey.
0 -
cathy67, thank you. I'm going to be as okay as I can be. And right now, what more can I expect? I need to figure out how to put my hands up on this roller coaster. I'm seat belted. The road is one that many others ride every day. I know that by letting go of my tension, I'll have a better ride.
0 -
Sarah,
It is good that you still so calm. Move forward to the treatment forum, you will find lots of sisters there. When u have your treatment schedule, go see if there is a group there, then you can share your journey.
I know it is hard, but it is doable with breaks.
Best wishes!
Cathy
0 -
Sarah,
I mean if there is a group for those doing treatment right now, such as, chemo may 2022, radiation may 2022,,.or you can create a thread.
0 -
They didn't offer OncoTypes when I was diagnosed; but (looking back) with a large, grade 3, PR- tumor (just like yours), I think it would have been smart of me to do chemo no matter what that score would have been. It gave me a much better shot at never having to deal with cancer again (as I am 15 years out, I can say it was well worth it for me). Chemo wasn't fun, but it also wasn't as horrible as the horror stories one hears. Hang in there, get a plan in place, get it over with, recover, LIVE!
0 -
ruthbru,
Thank you still being here to help newcomers, you are our hope!
0 -
ruthbru, Thank you. I am grateful that there is treatment to help reduce my risk. And, I think that knowing what I do about my tumor, I would have worried more without having chemo.
0 -
ruthbru,
Thanks, I will check that out, sounds like fun
0 -
SarahMaude,
Your crystal ball (read researchapalooza) didn’t steer you wrong. I’m sorry that it wasn’t a surprise 12 but I know you will feel better since you have a direction to move in. I also was terrified it would come back as one of those choose your own adventure numbers
0 -
Beginagain22, sometimes I regret my google-fu black belt. But really, having all the information I did helped.
Saw the MO today and I’m set to start chemo next Wednesday. Ordered my Penguin cold cap supplies. I’m scared, because I don’t like to feel sick. But I’m also grateful for the drugs we have that provide hope for many more good days ahead. I’m also determined to move through this chapter with a focus on a successful finish. I can do hard things, and I have a strong family, a supportive employer and team members, good friends, and my BCO sisters that are here with me. I’m healthy other than having breast tumor cells that want to kill me. So, together, we’ll go after them.
The Rotten Melons women named their tumors Voldemort and Ted Bundy. For some reason mine has felt like a Norman to me. A very ugly, dorky guest that just won’t leave. I told my daughter that mine was Norman, and she reminded me of Norman Bates. Of course there is a killer named Norman. So, Seeds of Norman, prepare to die.
0 -
sarahmaude
Make sure you give us the chemo drug you will get. When my 4 doses of Red Devil went to 12, once a week carboplatin and taxol I thought WHAT? Then i settled in with my friends who were also getting chemo and supportive ones and my sister who just knew me and said a day at a time anything is possible. The routine of symptoms came and day 2,3,4 was rougher. Tired. Zofran and a sister pill for nausea kept me from barfing for all 13 weeks. Only once did i, but i think it was the muscle relaxer i also took which tipped the scale. My MO said from the start that all treatments are to kill the cancer. I love the naming you are all using.
0
