High Risk Breast Cancer Journey- Can I get off this ride now (Safely)?
October 12, 2024 6:27 AM Subscribe
I first asked about biopsies 2 years ago. Now I've just finished my second surgical excision. I have questions if anyone is familiar with this type of biopsy-excision-repeat journey. (And the hope that it can just stop before anything else happens) I can't find answers online/reddit/out there. I'm in the US.
I was first diagnosed with ADH which lead to a surgical excision in 2022, and the same thing happened again this Fall. My chart indicates that LCIS was found in the pathology but I assume it was removed fully since the recommendation is just meet with high risk group in 6 months and get annual mammograms- and/OR (eventually) opt for prophylactic mastectomies! Those seem like polar extremes to me. (Have high risk factors but negative genetic testing).
But anyway, the real question is- what am I actually supposed to do? (Yes, I got a second opinion (which was to do the increased surveillance), I am in the US with currently ok insurance). It feels like I am just supposed to keep getting checked every six months (which I'm fine with) until I eventually get BC (which obviously I am not fine with- but am thankful I'm not there yet and want to avoid it at all costs-or do I? Since I can't really "afford" to miss 2 months of my job and don't really have someone to help me 24/7 during recovery- but then obviously preventative is better than waiting for a much worse situation? ).
Does anyone have any experience with this type of high risk breast cancer "journey"?
I was first diagnosed with ADH which lead to a surgical excision in 2022, and the same thing happened again this Fall. My chart indicates that LCIS was found in the pathology but I assume it was removed fully since the recommendation is just meet with high risk group in 6 months and get annual mammograms- and/OR (eventually) opt for prophylactic mastectomies! Those seem like polar extremes to me. (Have high risk factors but negative genetic testing).
But anyway, the real question is- what am I actually supposed to do? (Yes, I got a second opinion (which was to do the increased surveillance), I am in the US with currently ok insurance). It feels like I am just supposed to keep getting checked every six months (which I'm fine with) until I eventually get BC (which obviously I am not fine with- but am thankful I'm not there yet and want to avoid it at all costs-or do I? Since I can't really "afford" to miss 2 months of my job and don't really have someone to help me 24/7 during recovery- but then obviously preventative is better than waiting for a much worse situation? ).
Does anyone have any experience with this type of high risk breast cancer "journey"?
I had a scare this past year where they found hyperplasia (precancerous cells) with in the endometriosis on the outside of my bladder. Usually this type of cell is found in the uterus and turns cancerous quickly.
The recommendations I was reading were that biopsy would be done every 6 months and then slow down as time passed and no cancer was found. You might ask your doctor, how long they need to be checked every six months and what happens if cancer isn't found after 3 years or 5 years.
posted by Art_Pot at 8:07 AM on October 12 [2 favorites]
The recommendations I was reading were that biopsy would be done every 6 months and then slow down as time passed and no cancer was found. You might ask your doctor, how long they need to be checked every six months and what happens if cancer isn't found after 3 years or 5 years.
posted by Art_Pot at 8:07 AM on October 12 [2 favorites]
It feels like I am just supposed to keep getting checked every six months (which I'm fine with) until I eventually get BC
First part yes (for a while), but why do you think the last part? I can't imagine your doctors told you this. So where are you getting it from?
posted by praemunire at 9:58 AM on October 12
First part yes (for a while), but why do you think the last part? I can't imagine your doctors told you this. So where are you getting it from?
posted by praemunire at 9:58 AM on October 12
Response by poster: First part yes (for a while), but why do you think the last part? I can't imagine your doctors told you this. So where are you getting it from?
That's a good question and made me think.
I'm getting it from the fact the surgeon suggested prophylactic mastectomies indicating that at 50 I still have a lot of time for issues to develop. Insurance also technically I think covers it at 20% plus lifetime risk and I'm approx 40%- so someone else has done some cost benefit analysis there.
Also, it just seems that if something happens twice in two years with increasing risk (LCIS vs ADH), then it seems likely that my body/cells have some drive to do this...plus breast cancer affects 1/8 women? That's a huge number.
posted by bquarters at 10:50 AM on October 12 [1 favorite]
That's a good question and made me think.
I'm getting it from the fact the surgeon suggested prophylactic mastectomies indicating that at 50 I still have a lot of time for issues to develop. Insurance also technically I think covers it at 20% plus lifetime risk and I'm approx 40%- so someone else has done some cost benefit analysis there.
Also, it just seems that if something happens twice in two years with increasing risk (LCIS vs ADH), then it seems likely that my body/cells have some drive to do this...plus breast cancer affects 1/8 women? That's a huge number.
posted by bquarters at 10:50 AM on October 12 [1 favorite]
I'm also high risk but negative for BRCA-1 and 2. I'm on a low dose of Tamoxifen for 3 years and have increased surveillance - mammogram alternating with MRI every 6 mos. Did your doctors talk about either Tamoxifen or an aromatase inhibitor? Feel free to memail if you like. And have had needle biopsies a couple times. I don't assume BC is inevitable but certainly catching early is better.
posted by leslies at 12:37 PM on October 12
posted by leslies at 12:37 PM on October 12
I did a layman’s deep dive into PubMed to get a better understanding of a close relative’s LCIS prophylactic bilateral mastectomy journey that happened a couple of decades ago which sounds somewhat similar to yours. (I was the surgical recovery support person so I got up close and personal with the reality of mastectomy.) My understanding is that there’s not a straight path of LCIS developing into cancer - it’s a risk-factor, not a precursor. LCIS definitely seems far less studied and understood than DCIS and breast cancers. While repeated scans/biopsies/excisions and the associated stress/worry shouldn’t be dismissed, because it IS a heavy burden, prophylactic mastectomies are very intense medical procedures. My relative had ongoing pain and discomfort for the rest of her life even though her surgery was “textbook” and “successful.”
If I were you I would meet with an oncologist (not just the surgeon) to get a strong understanding of your risk level and the pros/cons of various monitoring/interventions/preventions so you can make an informed choice based upon your needs/values/circumstances. And you do have time to change your mind if you later decide you want to eliminate all the risk you can.
posted by stowaway at 2:37 PM on October 12 [5 favorites]
If I were you I would meet with an oncologist (not just the surgeon) to get a strong understanding of your risk level and the pros/cons of various monitoring/interventions/preventions so you can make an informed choice based upon your needs/values/circumstances. And you do have time to change your mind if you later decide you want to eliminate all the risk you can.
posted by stowaway at 2:37 PM on October 12 [5 favorites]
Mastectomy best practices have changed over time and I will say as someone who had one prophylactically for BRCA1 (no reconstruction, to be fair, which would have increased the complexity), it is nice to be free of worry. I would say understand your risk to the best degree you can, understand what the mastectomy option would be like as best you can, and decide then. I wouldn't rule it out completely without finding out more. This website has useful information.
posted by lookoutbelow at 7:16 PM on October 12 [1 favorite]
posted by lookoutbelow at 7:16 PM on October 12 [1 favorite]
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Ultimately, I made the decision because the option of having cancer but catching it early was really, really unappealing. I did have the privilege of a job that gave me sick time, insurance that covered everything, and family who were willing to take care of me for a couple weeks. I can't imagine how much harder the decision would have been without those things and I am so sorry you're going through this.
posted by tangosnail at 8:03 AM on October 12 [3 favorites]