1. < Breast Cancer

Wondering if I'm taking the right path...

Posted by copingatround2 @copingatround2, Aug 17 12:25pm

Hey everybody. I'll try to keep it short. Just had a 2nd lumpectomy last week. Diagnosed with DCIS last December. Had a rough time deciding between mastectomy and lumpectomy (took about 6 months). Genetic testing showed PALB2 mutation, but no known familial history. Had a fibroadenoma removed from my right breast 25 years ago (when I was 16); no other issues or testing until these past 2 years. I have dense breasts and thus far most of the spots they've found have been relatively small (like .5cm- plus or minus .1-ish). 1st surgery back in May (DCIS-left, radial scarring-right) margins weren't clear, and had spread to a couple spots outside the duct. 2nd surgery (only on the left) with lymph node testing. Clear margins. Found 1 node with cancerous cells. Awaiting post-op follow up.
Got a few different opinions when deciding on the first surgery. A couple different physicians were conversationally leading towards mastectomy, but said it was ultimately my choice. One very pointedly said I did NOT need a mastectomy at this juncture and that I should reduce my controllable risk factors first (with the lumpectomy and radiation).
I considered the mastectomy for a bit, more so for the peace of not worrying about it anymore. I am not wholly concerned with the cosmetics (2nd lumpectomy was only on the left and now has a little deformity) and would not do reconstruction. But I just didn't quite see the point of - blowing up the whole house for just a few ants.
Maybe I'm in my head about it, but it seems like even though I've killed 100 ants, there's just one more little bugger hiding, and maybe getting bigger. I haven't done any chemo or radiation, but my first thoughts say see this path through, no matter how arduous, and do a mastectomy as a last resort.
On the other hand, I've already had 3 surgeries. I have a gene mutation. While I'm nervous about cutting off part of my body I've had since I was 8, I can't say I'd be mad about never wearing another underwire! Why am I putting off the inevitable? Am I ignoring the signs and setting myself up to get something much worse if it comes back?
Thanks for reading.

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kathyomaha55 | @kathyomaha55 | Aug 21 9:17am
In reply to @windyshores "Aromatase inhibitors suppress estrogen from the adrenals. It helps to try different AI's, different manufacturers. I..." + (show)
@windyshores

Aromatase inhibitors suppress estrogen from the adrenals.

It helps to try different AI's, different manufacturers. I ended up taking brand name letrozole (Femara) though in the last month I found a generic I could tolerate.

I found that walking at least 40 minutes also helped, as well as tai chi. I was fortunate in not having severe issues (except for bone loss which has been mitigated with Tymlos).

I did the Breast Cancer Index test to see if I would benefit from extended treatment and the answer was no. I felt safe while on Femara to be honest, but I followed the advice of the BCI and stopped.

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I was so frustrated that my new oncologist (old one retired) at 5 years refused to do the Breast Cancer Index test to see if I would benefit from extended treatment. She said only if I agreed to take it for another 5 years would they order the test. I didn't agree to take it longer. I never understood that.

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2 replies
drummergirl | @drummergirl | Aug 21 10:32am
In reply to @kathyomaha55 "I agree it's a personal decision. They explained that no matter how good the surgeon -..." + (show)
@kathyomaha55

I agree it's a personal decision. They explained that no matter how good the surgeon - there is still some breast tissue left behind by the muscle wall. They also had a study of 10,000 nurses that showed the (people with similar cancers) had 2 groups and 1 group chose mastectomy & one did not, that the reoccurrence rate was the same in both groups. This was a panel of highly respected surgeons, oncologists, etc. from the Omaha area. They said the 4 places it most likely came back in was the brain, bones, liver & lungs. Statistically, it did not come back in the breast as you would expect it to. I was also surprised with this information. This was in 2019. My tumor was right up against the chest wall. I had already chosen a lumpectomy & did not have the BRACA gene. I'm sure each person is different.

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Yes, I know you stated that, but that theory does not address existing lympho vascular invasion and microscopic DCIS that you don’t even know exists pre surgery and you would unknowingly leave it there. I have read about the nurses study and I certainly know it can go elsewhere, but for me, I feel much better having that tissue gone for good reason. I am sure that you made the right choices given your personal situation.

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windyshores | @windyshores | Aug 21 6:20pm

I feel that we need to distinguish metastasis from local recurrence. This discussion gets confusing for me. My perception is that "coming back" refers to local recurrence and "spread" refers to metastasis. Maybe I am wrong. I dread the latter a whole lot more.

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2 replies
windyshores | @windyshores | Aug 21 6:26pm
In reply to @kathyomaha55 "I was so frustrated that my new oncologist (old one retired) at 5 years refused to..." + (show)
@kathyomaha55

I was so frustrated that my new oncologist (old one retired) at 5 years refused to do the Breast Cancer Index test to see if I would benefit from extended treatment. She said only if I agreed to take it for another 5 years would they order the test. I didn't agree to take it longer. I never understood that.

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@kathyomaha55 the BCI is in the NCCN guidelines. In other words it is now sanctioned best practice. The doctor requiring 10 years is making the BCI useless. (Also I read that 7 years was as good as 10, but that was a long time ago).

I printed out all the paperwork and filled it out so that the MD just had to sign. Do you think that would work?

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kathyomaha55 | @kathyomaha55 | Aug 21 8:00pm
In reply to @drummergirl "Yes, I know you stated that, but that theory does not address existing lympho vascular invasion..." + (show)
@drummergirl

Yes, I know you stated that, but that theory does not address existing lympho vascular invasion and microscopic DCIS that you don’t even know exists pre surgery and you would unknowingly leave it there. I have read about the nurses study and I certainly know it can go elsewhere, but for me, I feel much better having that tissue gone for good reason. I am sure that you made the right choices given your personal situation.

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I don't mean to upset you - I'm sure your decision was correct for your situation. You asked why they said that & I was just replying to your question about the panel discussion I went to.

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kathyomaha55 | @kathyomaha55 | Aug 21 8:06pm
In reply to @windyshores "I feel that we need to distinguish metastasis from local recurrence. This discussion gets confusing for..." + (show)
@windyshores

I feel that we need to distinguish metastasis from local recurrence. This discussion gets confusing for me. My perception is that "coming back" refers to local recurrence and "spread" refers to metastasis. Maybe I am wrong. I dread the latter a whole lot more.

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Yeah - me too. I dread the spread. If I had a local reoccurrence - I might consider a mastectomy. It depends on the circumstances. I was recently diagnosed with a "lesion" on my liver. I went to my primary & insisted that they diagnose it further. I don't like the word lesion. maybe I can ask my primary about the BCI test. I also had a cyst on a kidney - they did an MRI & decided it was a water filled cyst & not a solid tumor. I guess I'll be on the lookout the rest of my life. I'm 69 now. That panel I went to was discussing metastasis recurrence.

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vegada | @vegada | Aug 22 7:18am
In reply to @windyshores "@copingatround2 the Oncotype test is done on tumors that are ER+ and HER2- with up to..." + (show)
@windyshores

@copingatround2 the Oncotype test is done on tumors that are ER+ and HER2- with up to 3 positive nodes. Many of us who would have had chemo before this kind of testing (Mammaprint is another one) avoided chemo as a result of a low score. I had a grade 3 cancer, highish Ki67%, lymphovascualar invasion and a positive then equivocal then negative HER2! I as headed for chemo but my Oncotype was 8. I did letrozole for 5 years after double mastectomy. No radiation or chemo. I am 10 years out knock on wood.

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I had both Oncotype and Mammaprint and the Onctyoe can back with a score of 29 (in the category thst I would benefit from chemo) and the Manmaprint came back as low risk. So I view both of these tests as one indicator along with your other prognostic values I did not do chemo and will never know if that is the right decision but in my case, the Oncotype was the outlier saying I was high risk when all my prognostic values and Mammaprint said low risk.

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vegada | @vegada | Aug 22 7:25am
In reply to @kathyomaha55 "I was so frustrated that my new oncologist (old one retired) at 5 years refused to..." + (show)
@kathyomaha55

I was so frustrated that my new oncologist (old one retired) at 5 years refused to do the Breast Cancer Index test to see if I would benefit from extended treatment. She said only if I agreed to take it for another 5 years would they order the test. I didn't agree to take it longer. I never understood that.

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I would be frustrated with that answer too. I just had the BCI test and I have been on Anastrozole for a little more than 4 years. I was stage 1a. Well the BCI test said I would benefit from an additional 5 years of taking the AI, however, I have already had two other oncologists tell me that don't even order the BCI for stage 1 because they said BCI does not differentiate between Stage 1 and 2 and his view is there is a difference that should be considered. Another oncologist said the risk for continuing in his view is not worth it given my current rate of recurrence would change to .8 of I extended for another 5 years and like 1.3 if I don't. So I have just learned over the last four years that some of the decisions made are based on what the Drs patient experience overall has been and the Drs best advice.

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1 reply
windyshores | @windyshores | Aug 22 9:35am
In reply to @vegada "I would be frustrated with that answer too. I just had the BCI test and I..." + (show)
@vegada

I would be frustrated with that answer too. I just had the BCI test and I have been on Anastrozole for a little more than 4 years. I was stage 1a. Well the BCI test said I would benefit from an additional 5 years of taking the AI, however, I have already had two other oncologists tell me that don't even order the BCI for stage 1 because they said BCI does not differentiate between Stage 1 and 2 and his view is there is a difference that should be considered. Another oncologist said the risk for continuing in his view is not worth it given my current rate of recurrence would change to .8 of I extended for another 5 years and like 1.3 if I don't. So I have just learned over the last four years that some of the decisions made are based on what the Drs patient experience overall has been and the Drs best advice.

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The BCI just gives a yes or no with no nuance so clinical judgement is needed as well. I also did the Prosigna Assay at 5 years. I actually wanted to do two more years after I finished 5 years but my oncologist didn't want me to do anymore (due to bone loss) and so the BCI made me feel better about stopping. Every situation is different!

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myoga | @myoga | Aug 22 9:55am
In reply to @windyshores "I feel that we need to distinguish metastasis from local recurrence. This discussion gets confusing for..." + (show)
@windyshores

I feel that we need to distinguish metastasis from local recurrence. This discussion gets confusing for me. My perception is that "coming back" refers to local recurrence and "spread" refers to metastasis. Maybe I am wrong. I dread the latter a whole lot more.

Jump to this post

Thank you for pointing out that the research is about metastasis, not recurrence. Unfortunately there is no reliable test to predict cancer metastasis. We just have to watch out for symptoms.

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