Hello everyone, I am new to the group but have gotten so much valuable information and I thank you. I had a mastectomy in June of 2017 and felt like I was almost to 5 years. A new oncologist started in my practice and we had a great initial meeting where she asked lots of questions. She asked if I had any unusual pain in my bones and I said, well, my hip and leg. She immediately ordered a scan and we found that it had metasticized into two places in my spine. I’m now on Ibrance125 and letrozole. 3 weeks on and one off.
The point of my post is don’t ever assume a pain or a twinge is benign. The tests my precious on. used said everything is fine. I am so grateful for my new oncologist.
Thank you for reading. Have a good day. I’m planting herbs today!
Clair
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Brooks225
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Hello and welcome on here ! I am in the U.K. and have been a member of this forum for over three years and have found it to be such a godsend ... the ladies on here are so helpful and supportive !
After a routine Breast screening at 53 I was diagnosed with bc and I too had a mastectomy (right) in late 2017 , as well as axillary clearance and implant reconstruction at the same time . 16 out of 18 nodes were bc positive so my surgeon she recommended that I had a ct scan and bone scan to check it hadn’t gone elsewhere . It was found to have metasticized to my bones (hip / spine ), but low volume , and I was stage 4 (de novo). I was then transferred to the oncology unit and put on Ibrance/Letrozole straight away , at the end of 2017, (didn’t have chemo or radiotherapy), and was ‘stable’ from my first post diagnosis scan and continue to do well on this combination 40 months on .I hope this protocol works as well for you too !
Have a good day too and happy planting! We have just begun to come out of a long lockdown here ... so it’s off to the car wash for me , then coffee and cake at my local farm shop, albeit on the outdoor terrace for now ...then a long awaited hairdressers visit on Thursday ! I just want to pack in so much having been in lockdown for such a long time , but I will still be cautious, despite having had my two Covid vaccines . Take care ! x
I know what you mean by being cautious even after being fully vaccinated. I’m working to discern what is a real concern and what is residual concern.
We ate at an indoor restaurant for the first time in a year. It had 20 foot high ceilings, is well ventilated, and has very good spacing between tables. We met a friend who’s fully vaccinated and it was such a delight.
The next day I told my husband I’d slept better than I had in months. (He teased that it was the alcohol. But I’d had a modest amount over several hours.)
I really think I had this great sense of relief after such a prolonged period. It felt like a blessed return to “normal.”
I’m not ready to go to a crowded bar or small venue. Baby steps
Yes I feel the same way ! The non-essential shops , and pubs (all currently outdoors only ) reopened here yesterday and were shown on the news to be rammed with people , so I will wait a bit longer to add those to my current wish list ! Indoor restaurants/pubs and cafes reopen just over a month away here .
For peace of mind , I have just taken up the English government’s offer of free twice weekly lateral flow testing , available online and delivered to your home . I am very aware that despite having had my two vaccines , we who are considered ‘immunocompromised ‘, will not get as much protection from them as others who have had them . Also there is still the concern about other variants , such as the South African one, and how well vaccines cope with these variants . So going to do as much as I feel ‘safe-ish ‘ with , but remaining cautious ! Enjoy ! x
Welcome to this group. I was diagnosed June 2018. Finding this group really helped, especially early on when I felt overwhelmed. We are here for you.
I’m grateful you are a good advocate for yourself. It isn’t always easy. You are absolutely right to encourage us to listen to our bodies. I’m glad you found a new doctor who suits your needs.
Hi Brooks, Welcome ❤️ I was diagnosed in 2016 at age 48. Went through all the treatments. Mastectomy, reconstruction, chemo, radiation and was declared cancer free in 2017. After complaining of extreme abdominal pain for over two years and finally being admitted with a small bowel obstruction they did an exploratory surgery and found my cancer had metastasized to my stomach and intestinal linings. Fun, right?
My other lived in Hill Country to many years, Medina. I visited several times. So beautiful!!
Hi Clair and hello from North Texas - Denton! Aren't the bluebonnets beautiful this year? And the Indian Paint Brush and Pink Ladies - love the wildflowers of Texas.
Kudos to your new oncologist for asking the right questions! I went through something similar with my primary care doc. I was initially diagnosed Stage III BC in May of 2008. Had two lumpectomies, chemo, radiation and declared cancer-free by November of that year. In September 2016, no one was thinking cancer so the pain in my sternum was put down to costochondritis and the pain in my femur was decided to be arthritis by my primary care doc (I was only seeing my oncologist every six months at this point). An x-ray proved her wrong - the cancer was back. I don't blame my PC, I should have pushed harder for diagnostics sooner ( learned a lot about self-advocacy). I've been on Ibrance and letrozole since February 2017 and NEAD since about August 2017 and doing very well.
Yes, the wildflowers are spectacular this year in spite of the horrible ice storm. It’s always life affirming to see those gorgeous bluebonnets. I so appreciate the support of this group.
Thank you so much - it’s good to know there is support and I don’t feel so alone. Family, husband & friends don’t understand all the complexities of this disease- everyone wants to know how long i’ll be on chemo & when u say forever, they sort of get it. Strong women here,
Hello, Clair! Sounds like your MBC was discovered early, and good for your oncologist for acting on your mention of bone pain. My MBC was diagnosed in November 2017, with extensive mets to spine, followed by radiation and 32 months on Ibrance/Letrozole. I had mild progression 8 months ago and was switched to Faslodex. This diagnosis is not necessarily a death sentence and often allows us, with treatment, to resume and enjoy life for a long time.
It is so encouraging to hear these positive affirmations. I feel,so much more positive about this and definitely do not see it as a death sentence - I’m 72 & looking to celebrate 85! Thank you for replying.
Clair! So glad you found this positive-minded and informative group! I’m turning 72 next week with a 30-year old son about to propose to his girlfriend and a 27-year old daughter who just became engaged to her boyfriend. My dream future? Becoming a grandmother! ♥️♥️ More power to us!! 🙏🏻🙏🏻
Hi Lisa, Dr. Alisa Rieber with Tx Oncology in Fredericksburg. look up her credentials - 8+ years at MDA - cancer survivor, very proactive and up to date about many protocols. I think you would really benefit from her counsel. please use my name - Clair Pasahow
Hi ClairWelcome to the forum. I am Debra from the Uk. Diagnosed bone, lymph and pleural mets Oct 2020. Doing good on Ibrance, Faslodex and Xgeva since Dec 2020. Previously 10 years breast cancer stage 2 twice, various treatments inc mastectomy 2018.
Found everyone so helpful and supportive.
I too am in UK, coming out of lockdown and enjoying local farm shop, car washing and had a haircut at last, made me smile,same as teddielotte.
I know what you mean by not ignoring a twinge, I had back pain, my GP in lockdown would only do a telephone assessment and kept giving me painkillers. I knew something was really not right so I referred myself to a physio. First telephone appointment he sent me the next day for an urgent MRI and that’s when I was diagnosed. I rang him back to thank him at a later date when I got over the shock and he said after doing the job 37 years he knew what I was saying was not right.
Also on a brighter Spring is here note
I too love gardening and it’s a lovely time to plant, hope you have a lovely day, it’s sunny in UK, hurrah.
Hooray for sunshine! one of my dear friends lives outside of London and I keep up with your area. I love London! TY for your post, I have learned to read the signs my body gives me and I do not ignore. So glad you listened to your body, too. Enjoy your day!
Hi and welcome. Sounds like you have a great Onc which helps on this journey. I have been on Ibrance and Letrozole for 2 years now and am doing well on it. I am 52 and dearly want to see my 14 year old son grow to an adult. Just hearing all these positive stories help us believe we have a lot more time left. Hope you enjoyed your planting.Clare
Over the course of my journey that began in 2012 with a breast cancer diagnosis, I have learned you have to advocate for yourself. Sometimes you have to stand up and scream at them which is what I did in 2019 when I forced my primary physician to stop following the rules and cut to the ct scans to see if something was wrong instead of assuming it was sciatica or pinched nerve. I had been "cancer free" for 7 years at that point. Turned out to be cancer that had metasticized to the bone. Good for your oncologist for taking a proactive approach. I wish you great success on IBRANCE. I have been doing the protocol for over a year and am tolerating it well and it is working!
Hi Clair! I lived in the Austin Tx area for 25 years— love the bluebonnets! Welcome the the group. I’ve been on Ibrance/ exemestane for 16 months and tolerating it well. I’m so grateful for the research and treatments we have today!
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