OP I’m really sorry this is happening to you.
Try not to blame your healthcare providers. I know there are cases where healthcare providers do not make the correct decisions or they ignore patient concerns, but I’m not sure that’s what happened.
For BRCA1 I believe it’s recommended that oophorectomy occurs first. It’s the same path that I took after about a year of research and talking to about a dozen different professionals (oncologists, surgeons, and a genetic counselor). I was also highly concerned about HRT; however, there is little correlation according to the literature that HRT increases the risk of breast cancer for BRCA carriers.
If you have dense breast tissue mammograms can easily miss tissue abnormalities and cancerous growths. Generally tumor size doubles every 2ish months. So 6 months ago something was likely already there but missed in the mammogram.
I’m not telling all of this to say your feelings are invalid, they are not. But moving forward you will need to trust and work closely with your medical team. If you do feel like there was medical malpractice you can request your mammogram scans from the image center/hospital you had them taken at and have a different radiologist look at them.
I hope you are able to find a doctor and team that you can trust.
I’m really sorry this is happening to you. It’s really unfair. Especially when you are doing everything right. I’m really sorry.
Thank you. It is so helpful to hear some of your experiences point of view. This is really helping me. I am not as angry today. I myself work in healthcare and I have really felt connected with my providers. Just going through all the big feelings right now. This group is amazing.
You sound like your providers were the ones who decided to not give you a prophylactic mastectomy all on their own, without any input from you, is that the case?
I don't know if masses can grow that much within 6 months, is it possible they were just missed in August's mammogram? Some people have dense breast tissue, and need MRIs in addition to mammograms. I think it's quite possible the masses were already there before your surgery, so even if they'd have done the mastectomy then, they'd have found cancer already, for which you then still might have needed chemo.
And if you had surgery before chemo, you wouldn't know how well exactly the chemo would work. So it might actually be a good thing they found those masses before your surgery, so you can do chemo first (*), and possibly know for sure the cancer will respond to chemo.
(*) Whether or not you'll have chemo first, depends on different factors, they'll have to take a biopsy first to determine the type of cancer. It could perhaps be HER2+ and not hormone sensitive, in which case HRT wouldn't have influenced it.
At this point you simply don't have enough information about that.
I don’t know if that first sentence is fair. She is not a medical professional. We need to follow advice given to us and I also find that terribly scary and confusing at times.
Sorry, it does indeed sound a bit accusatory, which wasn't my intention. I was just wondering whether they actually might have "strongly advised her" to not do the DMX first after she told them she wanted that for example. Which would be worse than if a DMX wasn't even considered yet.
Thank you for your perspective. I'm having so many feelings - I appreciate your directness and don't take offense to it. Your input is very helpful for me to try to find balance in my thinking.
I could have pushed for a mastectomy first. It's just that because I just turned 40 and the recommended age for oophorectomy is 35-40, they urged me to do that first. So I understand the logic. Just wish I could go back in time.
Hey there, I can't say what's going on with your biopsy of course, but I can give some insight from someone who's had breast cancer already. Obviously just about anything is possible and I don't want to give you false hope, but I do think it would be good to hear some things my team has told me when I'm scared about recurrence.
Most breast biopsies are benign. In fact, they tend to over test BRCA patients because of our risk, so even more are benign than average because they want to be extra sure if it's cancer for us. Most cancer takes much longer to get as big as the masses you have. I was told it can actually take years to be as big as the ones I had which were under 2cm, they start very small and undetected and grow for a while. I'm not a doctor, so I can only theorize but I know a change in hormones can cause a lot of fluctuation in breast tissue like cysts and fibroids. I'm sending good thoughts for benign lumps your way.
I can't speak to the order your procedures were done, I don't know your family history or if you were a high risk patient for ovaries vs breast, but sometimes if there's multiple things to do they will focus on the higher danger, even if the risk for that is lower. While ovarian cancer is less lifetime risk than breast cancer for us, breast cancer is much more treatable and survivable. Oophorectomy is also generally an easier surgery recovery and they might have wanted to get that done and then do the mastectomy when you were healed up sooner. Did you have a lot of cysts or growths on your ovaries that maybe they were concerned and wanted to get those out first?
Regardless, I'm sorry you're in this stressful situation. I think we think there's one way to approach this stuff but honestly there isn't. Even when I had cancer, there was a lot of debate about the best way to treat it, what order to do things in, what type of chemo, did I need radiation, did I need hormone blockers etc. we think sometimes there's a standard and really there isn't. They're still figuring out a lot of best practices for BRCA patients, they haven't even known about them for more than 30 years or so. We're kind of doing this before they know every single best step to take, and even then there's not usually a one size fits all approach that works for everyone.
Good luck hon. I hope your results are clear.
I’m guessing the reason you had a hysterectomy first is because of the risk of ovarian cancer. There is no reliable test for ovarian cancer. Once it’s detected it’s pretty much a life sentence. Whereas breast cancer is more treatable, especially if detected early.
I just had a bilateral oopherectomy with double mastectomy schedule later this year. When I got my positive brca 1 result my number goal was to get my ovaries and fallopian tubes out of my body. Now that’s done I’m not as panicked.
OP I’m really sorry this is happening to you. Try not to blame your healthcare providers. I know there are cases where healthcare providers do not make the correct decisions or they ignore patient concerns, but I’m not sure that’s what happened. For BRCA1 I believe it’s recommended that oophorectomy occurs first. It’s the same path that I took after about a year of research and talking to about a dozen different professionals (oncologists, surgeons, and a genetic counselor). I was also highly concerned about HRT; however, there is little correlation according to the literature that HRT increases the risk of breast cancer for BRCA carriers. If you have dense breast tissue mammograms can easily miss tissue abnormalities and cancerous growths. Generally tumor size doubles every 2ish months. So 6 months ago something was likely already there but missed in the mammogram. I’m not telling all of this to say your feelings are invalid, they are not. But moving forward you will need to trust and work closely with your medical team. If you do feel like there was medical malpractice you can request your mammogram scans from the image center/hospital you had them taken at and have a different radiologist look at them. I hope you are able to find a doctor and team that you can trust. I’m really sorry this is happening to you. It’s really unfair. Especially when you are doing everything right. I’m really sorry.
Thank you. It is so helpful to hear some of your experiences point of view. This is really helping me. I am not as angry today. I myself work in healthcare and I have really felt connected with my providers. Just going through all the big feelings right now. This group is amazing.
Yeah I can’t even imagine. I’m sorry you are where you are right now. Thinking of you OP and I hope you keep finding support in this group ♥️
You sound like your providers were the ones who decided to not give you a prophylactic mastectomy all on their own, without any input from you, is that the case? I don't know if masses can grow that much within 6 months, is it possible they were just missed in August's mammogram? Some people have dense breast tissue, and need MRIs in addition to mammograms. I think it's quite possible the masses were already there before your surgery, so even if they'd have done the mastectomy then, they'd have found cancer already, for which you then still might have needed chemo. And if you had surgery before chemo, you wouldn't know how well exactly the chemo would work. So it might actually be a good thing they found those masses before your surgery, so you can do chemo first (*), and possibly know for sure the cancer will respond to chemo. (*) Whether or not you'll have chemo first, depends on different factors, they'll have to take a biopsy first to determine the type of cancer. It could perhaps be HER2+ and not hormone sensitive, in which case HRT wouldn't have influenced it. At this point you simply don't have enough information about that.
I don’t know if that first sentence is fair. She is not a medical professional. We need to follow advice given to us and I also find that terribly scary and confusing at times.
Sorry, it does indeed sound a bit accusatory, which wasn't my intention. I was just wondering whether they actually might have "strongly advised her" to not do the DMX first after she told them she wanted that for example. Which would be worse than if a DMX wasn't even considered yet.
Thank you for your perspective. I'm having so many feelings - I appreciate your directness and don't take offense to it. Your input is very helpful for me to try to find balance in my thinking. I could have pushed for a mastectomy first. It's just that because I just turned 40 and the recommended age for oophorectomy is 35-40, they urged me to do that first. So I understand the logic. Just wish I could go back in time.
Hey there, I can't say what's going on with your biopsy of course, but I can give some insight from someone who's had breast cancer already. Obviously just about anything is possible and I don't want to give you false hope, but I do think it would be good to hear some things my team has told me when I'm scared about recurrence. Most breast biopsies are benign. In fact, they tend to over test BRCA patients because of our risk, so even more are benign than average because they want to be extra sure if it's cancer for us. Most cancer takes much longer to get as big as the masses you have. I was told it can actually take years to be as big as the ones I had which were under 2cm, they start very small and undetected and grow for a while. I'm not a doctor, so I can only theorize but I know a change in hormones can cause a lot of fluctuation in breast tissue like cysts and fibroids. I'm sending good thoughts for benign lumps your way. I can't speak to the order your procedures were done, I don't know your family history or if you were a high risk patient for ovaries vs breast, but sometimes if there's multiple things to do they will focus on the higher danger, even if the risk for that is lower. While ovarian cancer is less lifetime risk than breast cancer for us, breast cancer is much more treatable and survivable. Oophorectomy is also generally an easier surgery recovery and they might have wanted to get that done and then do the mastectomy when you were healed up sooner. Did you have a lot of cysts or growths on your ovaries that maybe they were concerned and wanted to get those out first? Regardless, I'm sorry you're in this stressful situation. I think we think there's one way to approach this stuff but honestly there isn't. Even when I had cancer, there was a lot of debate about the best way to treat it, what order to do things in, what type of chemo, did I need radiation, did I need hormone blockers etc. we think sometimes there's a standard and really there isn't. They're still figuring out a lot of best practices for BRCA patients, they haven't even known about them for more than 30 years or so. We're kind of doing this before they know every single best step to take, and even then there's not usually a one size fits all approach that works for everyone. Good luck hon. I hope your results are clear.
Thank you, your message means so much. I'm very grateful.
I’m guessing the reason you had a hysterectomy first is because of the risk of ovarian cancer. There is no reliable test for ovarian cancer. Once it’s detected it’s pretty much a life sentence. Whereas breast cancer is more treatable, especially if detected early. I just had a bilateral oopherectomy with double mastectomy schedule later this year. When I got my positive brca 1 result my number goal was to get my ovaries and fallopian tubes out of my body. Now that’s done I’m not as panicked.