I would say about the same. I am currently on limited medications, and minimal side effects most days. Some day I get a little whiny about the nausea or the long-standing neuropathy, but most days I can just focus on something else and keep moving.
Today I took a break from the whining and went and rode my horse with the other old girls at the barn.
@auntieoakley
Good to hear that you are doing well. You have a horse??? Lucky you!!! When I was in junior high, I had black and white pinto that was the sweetest horse ever! She didn't even use a bit. I loved her! We had miles and miles of scrub oaks with dirt trails running through them. My best friend got a horse at the same time. We even rode 3 miles to the beach occasionally. It was pure Heaven!
Then we sold our horses because we were moving to snow country. I was heartbroken. Two years later I came back to ride with a friend and was now deathly allergic to horses. I was a little sniffly when I had them, but nothing big. I was heartbroken again. Now I live in a large retirement community that has horses for rent for $7/hr and I can't even get near them. I've thought about wearing a gas mask, but not only would that minimize the nature experience, I think the horses would freak out!
I'm the world's biggest animal lover and allergic to every mammal except hypoallergenic dogs so I was lucky to enjoy poodles and schnauzers. I do enjoy all the squirrels that stop by for a nut or two every day. They rattle my front screen door to let me know they are there. Sweet little things! Nature keeps me going! 🙂
I was just looking up my BC details again from 2013, looking for oncotype. Don't see one. I was just very surprised to find IVC on the pathology report and then read the same as what windyshores just said, that's it's the same as one node being positive. It also mentions it's a key step in metastasis. No one mentioned that or any concern at the time. I had IDC ER/PR+ HER2-, medium grade 7 mm tumor. 6-7 lymph nodes all negative, clear margins. I do have both the BRCA2 mutation and the CHEK2 mutation (although we didn't know about CHEK2 at the time).
My surgeon's notes to me say 1-3% chance of recurrence if I opt for the double mastectomy. Higher if lumpectomy. There was a question about hormone therapy (tamoxifen) because I'm a CYP2D6 poor metabolizer, but was told there was an alternate med. I was concerned about side effects and he told me I had about a 99.6% chance of survival with hormone therapy and 99.2% without so I shouldn't even bother. Later I saw in his portal notes that I had declined HT. No, I accepted his recommendation. I often find doctor's online notes do not accurately reflect what we each said in the visit. Radiation and chemo were not suggested since it was not in the lymph nodes.
Fast forward 7 years to 2020 and I discovered recurrent breast cancer in my chest wall an inch from the original deep tumor. It's now highly aggressive at Ki-67 50%. My original surgeon then told me if I had taken hormone therapy that would have reduced my chances of recurrence by 50%. She knew I wasn't taking it and saw me 15 times in the past 7 years. The oncologist was her partner. She seemed to be pointing the finger at me. I wasn't pointing the finger at her, but she seemed very defensive about my recurrent cancer. How frustrating.
A different surgeon removed my new 1.2 cm tumor and a small part of my pectoral muscle, but there was a positive margin. She said she didn't want to go back in for more surgery, just let radiation take care of it (we hope!). I had 37 radiation treatments, 28 regular and 9 boost, but the first 4 boosts were off target since the surgeon reopened my old incision (long story). Another error, but I discussed this with the radiation oncologist before treatment and he said he would check with my surgeon.
My current oncologist told me in the beginning he disagreed with what I was told by the 2013 oncologist. The new one thinks cells likely already got away from the recurrent chest wall tumor before surgery because it's so aggressive now. So we wonder about those and if radiation took care of the positive margin. I didn't have chemo because of my pre-x neuropathy (would be in pain forever and can't take pain meds) and he doubts it would work on my recurrent cancer anyway. So I've been on Kisqali and Letrozole for over 2 years now and so far so good. This all supports getting a second opinion on everything which I didn't do, but highly recommend. I hope to be a cautionary tale for others. Thanks for listening.
I am so sorry to hear your story! Our healthcare providers have been keep failing us. I’ll pray for you and thanks sharing your experience to help other women…
Update: I am the one who started this post about LVI. Neither my surgeon nor my oncologist mentioned LVI when we met to set up a plan. I did ask about it and was told that it is a negative but it is not included in staging. I chose to have a double mastectomy in October, 2022 and am now taking Letrozole. I did not have radiation. I feel great at this point and am just trying to live my best life and leave the rest up to God. God bless each one of you!
Update: I am the one who started this post about LVI. Neither my surgeon nor my oncologist mentioned LVI when we met to set up a plan. I did ask about it and was told that it is a negative but it is not included in staging. I chose to have a double mastectomy in October, 2022 and am now taking Letrozole. I did not have radiation. I feel great at this point and am just trying to live my best life and leave the rest up to God. God bless each one of you!
@annkitz ditto- docs didn't mention it. I asked the surgeon via portal if it was focal or extensive and it was focal, so that was a little reassuring. One oncologist explained to me that it isn't a matter of it creeping up close to nodes- makes no difference where it is- instead it is that the cells are showing the capacity to move and settle, so that if those types of cells got through to the lymph or blood vessels, there is more risk than with (cancer) cells that do not show that tendency. That was supported by my highish ki67% and grade 3 at some hospitals (grade 2 at others). But... low Oncotype!
I was told one out of 5 radiologists would recommend radiation. The tumor board at Dana Farber recommended only meds. I had double mastectomy and did 5 years letrozole. Would have done 7 years but Breast Cancer Index test told me no benefit. My risk is now anywhere from 65.7% to 9% depending on the test. Oh-and the online risk assessments like cancermath don't include LVI either.
I am more than 8 years out. I think I am still more nervous- on the back burner mostly- than if I had had grade 1, low ki67% and no LVI! I guess it's the 95% ER 80% PR that saved me from chemo.
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@auntieoakley
Good to hear that you are doing well. You have a horse??? Lucky you!!! When I was in junior high, I had black and white pinto that was the sweetest horse ever! She didn't even use a bit. I loved her! We had miles and miles of scrub oaks with dirt trails running through them. My best friend got a horse at the same time. We even rode 3 miles to the beach occasionally. It was pure Heaven!
Then we sold our horses because we were moving to snow country. I was heartbroken. Two years later I came back to ride with a friend and was now deathly allergic to horses. I was a little sniffly when I had them, but nothing big. I was heartbroken again. Now I live in a large retirement community that has horses for rent for $7/hr and I can't even get near them. I've thought about wearing a gas mask, but not only would that minimize the nature experience, I think the horses would freak out!
I'm the world's biggest animal lover and allergic to every mammal except hypoallergenic dogs so I was lucky to enjoy poodles and schnauzers. I do enjoy all the squirrels that stop by for a nut or two every day. They rattle my front screen door to let me know they are there. Sweet little things! Nature keeps me going! 🙂
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2 ReactionsI am so sorry to hear your story! Our healthcare providers have been keep failing us. I’ll pray for you and thanks sharing your experience to help other women…
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2 ReactionsUpdate: I am the one who started this post about LVI. Neither my surgeon nor my oncologist mentioned LVI when we met to set up a plan. I did ask about it and was told that it is a negative but it is not included in staging. I chose to have a double mastectomy in October, 2022 and am now taking Letrozole. I did not have radiation. I feel great at this point and am just trying to live my best life and leave the rest up to God. God bless each one of you!
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3 Reactions@annkitz ditto- docs didn't mention it. I asked the surgeon via portal if it was focal or extensive and it was focal, so that was a little reassuring. One oncologist explained to me that it isn't a matter of it creeping up close to nodes- makes no difference where it is- instead it is that the cells are showing the capacity to move and settle, so that if those types of cells got through to the lymph or blood vessels, there is more risk than with (cancer) cells that do not show that tendency. That was supported by my highish ki67% and grade 3 at some hospitals (grade 2 at others). But... low Oncotype!
I was told one out of 5 radiologists would recommend radiation. The tumor board at Dana Farber recommended only meds. I had double mastectomy and did 5 years letrozole. Would have done 7 years but Breast Cancer Index test told me no benefit. My risk is now anywhere from 65.7% to 9% depending on the test. Oh-and the online risk assessments like cancermath don't include LVI either.
I am more than 8 years out. I think I am still more nervous- on the back burner mostly- than if I had had grade 1, low ki67% and no LVI! I guess it's the 95% ER 80% PR that saved me from chemo.
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3 Reactions