DCIS, too much info, just saw biopsy result, confused
I just saw my biopsy result on the medical page. My Dr appointment is not till Tues the 29th. I had rt breast discharge, MRI showed 'something"..so decided to do a excision biopsy. Had that the 18th...still sore!
Results show DCIS, grade 2. there's a bunch of other stuff I don't understand, even with looking it up. There's way too much info out there..and it gets confusing. I know I need to talk to my dr...and I am writing questions out for him.......
I understand this is the "better" type of cancer to get..but can still mean mastectomy and treatment?
My head is not in a good place right now......I'm 65, no kids...hubby and dog and cat no family...feeling kinda worthless and why bother.
any guidance. I truly felt all would be fine, was not worried...and WHOMP
just connecting thank you
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Hi Starsnow, I'm so sorry you got these results, and in a way and at a time when you have to wait so long for someone who can advise you on them. Those patient portals are a blessing and a curse. It's great to be able to see results right away, but when we don't really know what any of it means, we can only imagine the worst for hours and days until someone can give us real information specific to our own situation. I don't know what's ahead for you, but I know you are going to feel better after you have answers from the surgeon. I'm sorry it's such a long wait.
As for DCIS, it looks like you've found some good information, so I will just share my experience. Your treatment maybe different, but if it eases your mind at all to have some idea what might be ahead, here's my story:
I had something show up on a mammogram and had a core needle biopsy, where they stuck in a hollow needle and pulled out several clumps of cells that turned out to contain DCIS. They called to tell me in a very reassuring phone call. Basically, no one ever dies from DCIS, they said. We need to get it out because sometimes it can develop into invasive cancer, and we will treat it with radiation and hormone blockers just in case any more is trying to develo. But there's also some thought that in some cases it's OK to just leave it alone, because apparently they find a fair amount of DCIS in autopsies of women who lived normal lifespans and died of normal causes! My doctor even mentioned studies where people opt not to treat it at all, just watch it carefully, because they would like to figure out which types can be safely left alone so as not to subject women to treatments and side effects they don’t actually need.
My case turned out to be a little worse than that. I had surgery to remove the tumor, and the final pathology found a small bit of invasive cancer. Apparently that can happen in needle biopsies, because the needle just pulls out samples and not the whole tumor. I had to go back for a second surgery to remove and check lymph nodes. But they were clear, and with one thing and another I ended up at stage 1a instead of stage 0. I had exactly the same treatment I would have had with just DCIS - surgery, radiation, hormone blockers - and four years later I have had some trouble with scarring but no sign of recurrence.
In your case, it sounds like you've already had the entire tumor removed and thoroughly inspected, so you won't have to wonder if a needle biopsy missed anything. Did you have a MRI as well? If so, and if this is the only thing that was spotted, and they didn't find any invasive cancer in this tumor but just DCIS, then you may very well now be cancer free! With a sore boob, but cancer free! I was told that DCIS is never treated with chemo, so unless something has changed since my diagnosis, that shouldn't be on your treatment plan. Radiation and hormone therapy are often part of the picture for a DCIS patient, but depending on your specifics you may be able to skip one or both and just be done. I hope this is the case for you, but if not, it's do-able. Not fun, but do-able.
Again, I’d never want to predict what your treatment will be, but maybe it helps to have one story of a person who heard she had DCIS and is now OK.
As for support, these boards have been great but have been sort of quiet lately. And right now a lot of people are probably taking a break for the holidays. You do need support, and lately I’ve found some of that through an online Gilda’s Club group. Depending on where you live, you might also be able to attend one in person. Your surgeon may be able to put you on to local or online options as well. It’s so helpful to be able to to share experiences and feel less alone.
Hang in there! I know how hard it is to wait
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starsnow, we're sorry to hear about your biopsy results, but glad you found us and decided to reach out to our members. We know the first few days and weeks following a diagnosis can be overwhelming and frightening, also with a lot of information to process, but we are all here to help you!
Until your next appointment, you may find some helpful information here: Understanding Your Pathology Report, where you'll learn more about the characteristics of the cancer and treatment options. Also, to help decipher breast cancer shortcuts seen throughout the boards, check out this handy abbreviations and acronyms list.
Hope this helps! Please come back to let us know how you're doing!
The Mods
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Hi Starsnow, relax, you do have the best type of breast cancer, if there is such a thing. I have had breast cancer three time, the most recent was for DCIS with microinvasion. I had a mastectomy in October, but before you panic, it wasn’t because of this diagnosis as much as because I had IDC in 2003, treated with two lumpectomies (second for clean margins), chemo, and radiation. In 2019 I had ILC in same breast., treated with mastectomy with reconstruction. I wanted a bilateral mastectomy and was refused, supposedly due to a hospital policy of not removing a healthy breast. Also, my mother and two of three sisters had invasive breast cancer. I am not BRCA positive. I am on Letrozole, but not for the DCIS but due to the ILC I had in 2019.
I have absolutely zero concern about my recent DCIS. I am no breast cancer expert, for me it was like having breast cancer for the first time three times! You will have choices of treatments and you definitely won’t have to rush into a decision. By the way, I am in my late 60’s.
Seriously try to relax and definitely do not worry! You will be fine!
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I'm sorry you got hit with so much.
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Moderators, Thank you so very much. I KNOW this is the best cancer to get, but it still is cancer. It is unexpected and I am blind sided. Thank you for your understanding and words...and reference.
This is like the old party game of having a blind fold on, being spun around 10 times, then told to walk down the path. no matter how steady you are, you're going to wobble.
Thank you
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@starsnow77 - I’m so sorry you find yourself here. It is indeed a scary and confusing time. I think sometimes in our effort to reassure newly diagnosed BC patients, we can inadvertently send a message that it is ‘no big deal’ and of course it is a very big deal when it is happening to oneself. Wishing you the best at your appointment next week. If you feel like it, please keep us updated.
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I thought I posted yesterday but apparently I didn't hit submit. One of the hardest things I think is that while there are times we want to compare ourselves so a) we don't feel like we are going it alone or b) so we can try to predict (insert evil laugh here) how things are going to go. I don't think the second ever works quite the way we might hope since even if we have the same type of cancer in general that doesn't mean there isn't 89 million different things that impact us. So yes DCIS is an example of why early detection can be a great thing but your journey through it can be remarkably different. Some people breeze through treatment and others not so much. If they in fact got clear margins from your excision biopsy (can I just say I kept typing exercise why I don't know or spell check just wants me to exercise) then you might be done with surgery but DCIS can result in mastectomy or lumpectomy (also called partial mastectomy) or a wait and see approach (since there is a school of thought that DCIS might be being over treated there are some studies currently being done with delay surgery). Either your doctor will give you the options. Other treatments will vary depending on your wants/needs/situation. Radiation followed by an AI is often the 'standard' of care to lower the risk of a reoccurrence but some people opt out of either or both and for some the risks involved with either are not worth the reduction in reoccurrence risk. I know I'm not giving you a lot of information you can't get anywhere else but I think it's important to remember even though it doesn't feel like it you are in the drivers seat in terms of what you do or don't do
Now probably more importantly I think it's important that you use what services your doctors offer you in terms of support that is available. Therapist, dietitian (seriously why not) support group etc. Don't let the idea that it's “only" (I won't go into how I feel about that that word) DCIS make you feel like you are unworthy of being those things. None of my doctors ever approached DCIS as anything less or more than what it is. Because surgery is still surgery and radiation is still radiation and it still sucks. Finally if you end up doing radiation and they offer you a chance to pick the music you list to. Pick it. I so wish I had for all 19 days but I only did on Fridays.
I will be thinking of you on Tuesday and keeping you in my thoughts (and prayers if you want them) between thenand now.
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Harley07 thank you so much. I KNOW it could be worse...and I am lucky....but it is cancer. and that's scary. So scary. and this is not a path I thought would happen......I must say it hurts to be told No big deal. I have to go through another surgery, I have to go through radiation, and I have to go through the haunting of is there more, did they get it all what's next.
Thank you so much for the kindness of your words and understanding
wishing you the best
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Forgot to say you will probably end up needing to see more than one doctor so don’t be alarmed if they start trying to schedule you with multiple people. Surgeon (which I’m sort of assuming is who you are seeing on Tuesday ) Radiologist Oncologist (RO) who would go over all that is involved with that and a Medical Oncologist (MO) who would talk to you about possible prescriptions that you might need to consider after the fact (if chemo was in the plan they would be the one to handle that) Just wanted to throw that in so it doesn’t comes as a shock if they start talking about a bunch of other people My RO and MO gave me lots of information on paper so most everything they were saying to me was also written somewhere (so while it can be overwhelming there is something you can refer back to
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Thank you! I am very comfortable with my surgeon. Am not thrilled about seeing other/more medical people but thank you, I understand that is part of this. It all adds up, doesn't it/ I mean all these extras. no wonder it is overwhelming no matter how "good" of a diagnosis thank you quiet
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I, too, was diagnosed with DCIS back in 2017. Because of a family history, I opted for a double mastectomy. In addition, I knew that I absolutely did not want radiation, which was another reason I went for the BMX. As someone mentioned above, this is doable. Albeit not easy, but it’s doable. Yes, it’s true that DCIS is the “better” of them all, but still. I personally wouldn’t want to wait and watch, but to each their own. I wish you well in whatever journey you find yourself on. Please come back to update us.
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rrobin...thank you so much for your words. May I ask why you did not want radiation?
your words and understanding are a comfort
Thank you to everyone who has responded. The waiting game is tough. But Tuesday is getting closer, I have my questions, and my husband is taking the time off to go with me. He is usually "removed" from medical stuff unless I absolutely need a ride....but I think he sees the impact of this and has questions as well.
thank you for teh support and connection
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Stars,
Please don't quote me on this bc I am not a medical doctor nor am I in any way related to the medical field, but to my understanding and research, radiation can eventually cause secondary solid tumors down the road. Plus, God forbid if needed again, radiation cannot be given on the same breast twice… again, that’s to my understanding. (Someone please correct me if I’m wrong,) When I was facing my battle, I just wanted the girls gone. They served their purpose. I had too much of a family history so I didn’t think twice about the mastectomy. Now, due to the fact that I was 37 at the time, I did choose direct reconstruction immediately after the BMX, and I have absolutely no regrets on anything. I’m very pleased with my results. Don’t let anyone tell you how you should feel. You do what is best for you and your family. Listen to your doctor, trust in them. Get second opinions. Heck, get a third opinion if needed. DCIS isn’t a huge rush. Granted, you want it out, but make informed decisions. Do your research (you’re doing a good job already by coming to this forum!) One thing I do advise AGAINST… do NOT listen to Dr. Google. He isn’t a real doc and he lies and makes you worry and makes your mind go to deep, dark places. He’s awful. Stay far away from him. Did I mention I don’t like Dr. Google?!! Feel free to DM at any time. I understand your worry, concern, frustration. I’m sending you all well wishes. Enjoy your holiday. I hated when people used to tell me this, BUT.. you really do have the “good” kind of cancer and it’s not an immediate emergency (Insert eye roll here.) ❤️
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and so....I truly have an awesome Dr. and thanks to some of these responses I was able to ask the right questions. I am going for a second surgery this coming Friday. 12/2/22...hope the date is lucky.
Mastectomy is too extreme at this time...but if the next pathology comes back with some escaped bad cells then it will be discussed. Dr is hopeful....radiation will depend on findings and hormone therapy is on the list.
I'm nervous and scared but not as I was the first surgery. I just want it cleared out of my body, good margins, no escapees (bad cells) and can move on towards healing
I am still numb, and in disbelief.....I never thought it would happen to me. It wasn't even on my mind.
Guess that's part of what makes this such a tough disease.
HUGE HUGE thanks to those who have supported me. I've been trying to work on telling some people I need to tell...and then thinking of a few others and thinking, nah..they really don't need to know Hope that's okay.....
Thank you all wishing you the best
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well I’m not surprised by the second surgery since we talked about margins and given your recovery time from the last, it shouldn’t be too much different although it still stinks. I am so very glad you will feel comfortable with your surgeon. I think that makes a difference at least for a little peace of mind. One step at a time just focus on that otherwise it can become overwhelming. I’ll be thinking of you on Friday and hoping for a speedy recovery.
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hope Friday’s surgery was uneventful and that recovery is going wel
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hope Friday’s surgery was uneventful and that recovery is going wel
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Thank you quiet. The second surgery went well, I guess. It seemed to be quicker than the first. Dr has said it would be since he knew "where" he was going. First surgery he had to hunt for bad duct, as it was "hidden". I just got up and am feeling the day after ouch! Not bad if I don't move. Will be a low key day but will keep moving as best a I can. Sports bras are wonders, huh?
Now we wait for the results and then onward to next step.
Thank you for checking in..I appreciate it.
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Thank you quiet. The second surgery went well, I guess. It seemed to be quicker than the first. Dr has said it would be since he knew "where" he was going. First surgery he had to hunt for bad duct, as it was "hidden". I just got up and am feeling the day after ouch! Not bad if I don't move. Will be a low key day but will keep moving as best a I can. Sports bras are wonders, huh?
Now we wait for the results and then onward to next step.
Thank you for checking in..I appreciate it.
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Stars, I have been reading about your diagnosis and just wanted to say Hi and hope you are feeling well. I had the same diagnosis as you, just a year earlier. We are the same age. After my lumpectomy they found a micro invasion……very, very small. The lumpectomy had clean margins, so that was good. To be safe my surgeon suggested testing the lymph nodes so I had a second surgery (that one was a harder recovery…) and happily there was nothing to be found. I had a short course radiation (just five days) and did start tamoxifen but have since stopped as it adversely affected my blood sugar despite my low carb diet, very disappointed. I will have my bloodwork retested after a six month tamoxifen free trial and see if it really was the culprit. I have huge issues with taking pills and I’m happy about not taking this drug.
My recovery has been great and I am fully back at the gym lifting heavy and also walking a TON! I am relying on good diet and exercise , but who knows…life is always throwing curve balls.
I wish you the best, hope your recovery is swift and that this lumpectomy comes back with clear margins and no other signs of cancer. You got this
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Stars, I have been reading about your diagnosis and just wanted to say Hi and hope you are feeling well. I had the same diagnosis as you, just a year earlier. We are the same age. After my lumpectomy they found a micro invasion……very, very small. The lumpectomy had clean margins, so that was good. To be safe my surgeon suggested testing the lymph nodes so I had a second surgery (that one was a harder recovery…) and happily there was nothing to be found. I had a short course radiation (just five days) and did start tamoxifen but have since stopped as it adversely affected my blood sugar despite my low carb diet, very disappointed. I will have my bloodwork retested after a six month tamoxifen free trial and see if it really was the culprit. I have huge issues with taking pills and I’m happy about not taking this drug.
My recovery has been great and I am fully back at the gym lifting heavy and also walking a TON! I am relying on good diet and exercise , but who knows…life is always throwing curve balls.
I wish you the best, hope your recovery is swift and that this lumpectomy comes back with clear margins and no other signs of cancer. You got this
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Bomb...thank you so much for reaching out. Today is a weird recovery day...it feels like fireworks are going off in my boob. I suspect that is nerve endings...so did break down and took a pain pill, which eased it. I am not a fan of pills either, but in some cases I guess the body really needs them.
A microinvasion? Glad they were able to catch that! That's the thing with this, it haunts me wondering if more is hidden....
I think the Dr was surprised that the papilloma was positive.....so we are ready for anything now. Hoping for clean margins so I can move a long the path a bit more.
It's funny, I almost feel guilty expressing concerns, fears, sadness...as I am lucky it is small, and found early. and it is not extreme treatments....but it is cancer...no matter how small..no matter how easy...and it puts things in perspective.
It truly hit me the other day...and tears flowed easily. But I know I can face this....even if it feels like shut up, hang on and go.
Telling people is difficult...so I decided there are people that just don't need to know..their reaction won't be what I need (ex SIL who would know all about it as her way is the only right way) and I find some strength in that decision.
strength. It comes in small bouquets.......
thank you again for connecting
Clean margins clean margins clean margins......
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Bomb...thank you so much for reaching out. Today is a weird recovery day...it feels like fireworks are going off in my boob. I suspect that is nerve endings...so did break down and took a pain pill, which eased it. I am not a fan of pills either, but in some cases I guess the body really needs them.
A microinvasion? Glad they were able to catch that! That's the thing with this, it haunts me wondering if more is hidden....
I think the Dr was surprised that the papilloma was positive.....so we are ready for anything now. Hoping for clean margins so I can move a long the path a bit more.
It's funny, I almost feel guilty expressing concerns, fears, sadness...as I am lucky it is small, and found early. and it is not extreme treatments....but it is cancer...no matter how small..no matter how easy...and it puts things in perspective.
It truly hit me the other day...and tears flowed easily. But I know I can face this....even if it feels like shut up, hang on and go.
Telling people is difficult...so I decided there are people that just don't need to know..their reaction won't be what I need (ex SIL who would know all about it as her way is the only right way) and I find some strength in that decision.
strength. It comes in small bouquets.......
thank you again for connecting
Clean margins clean margins clean margins......
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Stars, I am currently healing from breast reconstruction after bilateral masectomy. Diagnosed with DCIS Stage 0 in October of 2021. Several family members have a history of breast cancer so I opted for the masectomy, after much thought and prayer. Also had genetic testing. Another factor for choosing what I did was the cancer tested 100% estrogen positive and 90% progesterone positive. Had the masectomy in March, with expanders placed at the same time. Then had a blood clot in left breast so had to go back in surgery to have it removed. Then had an infection in right breast and had to have it removed. At this point I was pretty much a basket case, but didn't have much of a choice but keep moving forward. Had an expander put back in in July. So had the implants placed on October 31. Doing very well, but having some pain that shoots through both breasts at random times. Hopefully this will subside in the near future. Dr. has released me for now. Will have a check up in 3 months. I am almost back to doing everything I did before my diagnosis. I understand not telling some people. I also elected not to tell some people, just didn't need their input and "false concern"
Keep a positive outlook, take it easy and rest when you need to. Don't feel bad if you need to ask for help. You will heal quicker if you don't overdo it.
Hugs
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Stars, I am currently healing from breast reconstruction after bilateral masectomy. Diagnosed with DCIS Stage 0 in October of 2021. Several family members have a history of breast cancer so I opted for the masectomy, after much thought and prayer. Also had genetic testing. Another factor for choosing what I did was the cancer tested 100% estrogen positive and 90% progesterone positive. Had the masectomy in March, with expanders placed at the same time. Then had a blood clot in left breast so had to go back in surgery to have it removed. Then had an infection in right breast and had to have it removed. At this point I was pretty much a basket case, but didn't have much of a choice but keep moving forward. Had an expander put back in in July. So had the implants placed on October 31. Doing very well, but having some pain that shoots through both breasts at random times. Hopefully this will subside in the near future. Dr. has released me for now. Will have a check up in 3 months. I am almost back to doing everything I did before my diagnosis. I understand not telling some people. I also elected not to tell some people, just didn't need their input and "false concern"
Keep a positive outlook, take it easy and rest when you need to. Don't feel bad if you need to ask for help. You will heal quicker if you don't overdo it.
Hugs
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Thank you for yuor words, Busy....you have been through a lot. I know I am so lucky, so far. This was caught early. But isn't it amazing how similar diagnosis have such varied end results?
DCIS grade 2 , estrogen 100% and progest 95% I am going to be haunted wondering what else is developing.
Right now I am pretty sore. I don't have a sports bra but found a Hanes bra that has soft flexible cups, no underwire and is pretty comfy except when I move. I can't squish any tighter as there is a weird sensitivity that feels like hot flames . If I sit still it's not bad...I am hoping this passes.
Also hoping the next pathology comes back with good margins.
"False concern"....I so understand that and feel the same way. Right now I look at it as who truly is supportive and who zaps my strength. I need all that I can get.
Thank you so very much for your post Wishing you comfort
HUGs Amy
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Thank you for yuor words, Busy....you have been through a lot. I know I am so lucky, so far. This was caught early. But isn't it amazing how similar diagnosis have such varied end results?
DCIS grade 2 , estrogen 100% and progest 95% I am going to be haunted wondering what else is developing.
Right now I am pretty sore. I don't have a sports bra but found a Hanes bra that has soft flexible cups, no underwire and is pretty comfy except when I move. I can't squish any tighter as there is a weird sensitivity that feels like hot flames . If I sit still it's not bad...I am hoping this passes.
Also hoping the next pathology comes back with good margins.
"False concern"....I so understand that and feel the same way. Right now I look at it as who truly is supportive and who zaps my strength. I need all that I can get.
Thank you so very much for your post Wishing you comfort
HUGs Amy
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Starsnow, just wanted to jump on here and say hello. Please, please, use this group, they are amazing. They've managed to get me through to now. I started out with IDC stage 2 and moved to IDC with mucinous features stage 3C after my single mastectomy. The bc journey sucks at any stage. It's confusing, it's painful, and a lot of your choices seem to be taken away. That was how I felt, but I was able to read lots on here about others stories of diagnosis, surgery, chemo and radiation. It really helped to get me through it all. November 16th was the last day of my chemo and December 16th was the day I had my mastectomy last year. I'm not back to pre-cancer diagnosis me, but I'm a 110% better than I was last December.
It did change my tolerance level with people and relationships. I've let some friendships fall by the wayside, because I realized I was doing all of the work. I want people who support me, and I them, but I don't need anyone telling me I'm lucky, unlucky, etc. Thanks, but no thanks. And I no longer feel guilty about feeling that way, lol.
Please let us know next steps. There is usually a group for having surgery, starting chemo, or starting radiation each month and if not, start one yourself. There are lots of lurkers and our words help them. When they're ready, they will post.
Sending you hugs.
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Starsnow, just wanted to jump on here and say hello. Please, please, use this group, they are amazing. They've managed to get me through to now. I started out with IDC stage 2 and moved to IDC with mucinous features stage 3C after my single mastectomy. The bc journey sucks at any stage. It's confusing, it's painful, and a lot of your choices seem to be taken away. That was how I felt, but I was able to read lots on here about others stories of diagnosis, surgery, chemo and radiation. It really helped to get me through it all. November 16th was the last day of my chemo and December 16th was the day I had my mastectomy last year. I'm not back to pre-cancer diagnosis me, but I'm a 110% better than I was last December.
It did change my tolerance level with people and relationships. I've let some friendships fall by the wayside, because I realized I was doing all of the work. I want people who support me, and I them, but I don't need anyone telling me I'm lucky, unlucky, etc. Thanks, but no thanks. And I no longer feel guilty about feeling that way, lol.
Please let us know next steps. There is usually a group for having surgery, starting chemo, or starting radiation each month and if not, start one yourself. There are lots of lurkers and our words help them. When they're ready, they will post.
Sending you hugs.
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Kotchaj..
I appreciate your words. It's been a long year for you! I am waiting for the pathology results from this second surgery...but either way I'm on this train and can't jump off now.
I appreciate your insight re: relationships/friendships. I don't have family..except my husband, dog and cat. On his side is brother, sister in la, cousins. Let's just say I know where I stand with them so let it go. (Family party and I am not invited.) I realize people struggle with what to say or how to be supportive...but even if they make a bit of effort in recognizing the struggle then its appreciated. I think. I've told very few.
wishing you comfort this holiday season thank you for keeping me in your thoughts. It is confusing, scary and I still can't wrap my head around it.
HUgs Amy
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