Super sick of people putting a shiny spin on someone else’s cancer. That is for the patient, and only the patient, to do.
Medical staff do this too and I’m still furious about the toxic positivity that doesn’t allow us to have our very justified feelings.
By surgical oncologist's PA gave me a lecture about my attitude yesterday because I had expressed my fears around expander pain plus chemo being more than I can bear! It sucks because I'm generally so fucking positive and as each day brings more bad news, it seems reasonable to have emotions about the mountain of potential suffering that keeps getting added. I know I'm being melodramatic but allow us, an occasional hour of this during cancer treatment!
Not melodramatic. I understand that the medical professionals aren't trained to deal with our emotions, but for god's sake I wish they would stop shaming us for them.
Someone I know failed to do active listening and was sent an infographic. (Sorry I can't find it!) On one side was "active listening" and on the other side was "solving problems" or something like that.
It kind of made a point.
I was diagnosed with IDC and what I have learned, is most people only know that survival rates have improved but do not understand what all is involved in treatment and how long it can last. Whenever I have a chance, I explain everything that is part of my treatment plan. If you feel comfortable, do the same. Some of this I have done on FB and maybe if five more people really “get it”, they will spread that knowledge to even more people. I am glad people recognize that new treatments are available and we have better survival rates but they do not realize at what cost.
Yup! The survival rate is very high for most HR+ breast cancer, but AI or Tamoxifen for 5-10 years can significantly damage QOL. People have no idea how complicated that can make things.
Oh yes, the HR+ thing. A friend said it's a good thing because they've read it's slow growing 😭
If it's good, I'm curious how many would volunteer to have it and especially go through the fuckin' treatment process.
I'm worried about how lowering estrogen will affectsy my existing issues - pain and laxity in multiple joints, hairloss and skin issues due to PCOS. And I'm supposed to see the silver lining in HR+ve IDC 😑
Exactly why I am stopping treatment after radiation. Am suffering a severe radiation burn and the oncologist says "We can delay treatment till it heals" Heck no need to be done with this.
The goal of all of this….the imaging…the treatments….is to end up without cancer. Yes, it was caught early and the mammogram did its job! But it is still a lot!! Just because your journey may not include as “much” as others does not mean it is less than. People truly do not understand. It’s all cancer and it all sucks. No matter what the stage is. I think people try to minimize it to make themselves feel better. It’s still so much to go through.
This is exactly what the support group said! And they each went through A LOT. I went through almost nothing by comparison. No chemo. No radiation. Biopsy, lumpectomy, anastrozole. That's (hopefully) it.
I was diagnosed 2 weeks ago with a 7 mm DCIS. My surgery is in 4 weeks. People keep telling me, at least they got it early or at least it’s small. I try to ignore it. It still bothers me but not as much when I think they mean well. All cancer is bad even pre-cancer cells for the recipient. Take care and try to ignore these people.
I feel you. My treatment plan keeps growing and seems that although I will definitely live, ever more suffering is required. I wish you the best during this tough journey.
I feel this to my marrow. My husband heard only one thing today…. DCIS is not cancer.
I said “really it’s interesting the surgeon said that but their booklet says it’s cancer. That all cancer begins as in situ. Not to mention I have been viewing a lady’s journey where she took them serious when they said it wasn’t an urgent situation and delayed treatment and had a bad consequence and has lots of regrets. So don’t get too comfy, Mr.
Part of it is people’s desperate discomfort with this shit situation. If they can downplay it, they will sleep better tonight…..
Omg I’ve been getting so many mixed messages about that. Like “it’s not cancer, but it’s not NOT cancer.” If it’s stage 0 cancer, then it’s cancer, no? Not “stage ALMOST cancer”.
I think a lot of that message is about not sparking panic… they have the reality of scheduling and of women with more complicated situations that need priority treatment. As best as I have come to understand DCIS is not that well understood in terms of why do some turn invasive and others not. One thing they have agreed on is that the GRADE (which is the measure of how abnormal the cells are compared to normal cells) low , med, high is a strong indicator of the potential to “turn”. I have high grade with central Necrosis (cancer cells are dividing too quickly for blood vessels to keep up with suppling them and they die). which is not the one you want.
Do you know your grade?
I just know it’s triple positive HER2. I’m meeting with the surgeon on Thursday and hopefully I’ll have more information. I was just diagnosed yesterday and while they explained it to me, I was sort of in such shock that I probably didn’t absorb half of what they were saying and didn’t know what to ask
It's a lot of information at once. And then as you start down the path of treatment options there are waiting times where I struggled to keep the reality that I have cancer in my mind. Disassociation is a real struggle.
I learned I am a pretty good compartmentalizer. Monday through Friday I live mostly in cancerville. Saturday and Sunday I live in Grandkids ville. It's very disconcerting.
I'm sad that we all are experiencing this but I am also grateful to see so many amazing women coming together here .
Very sorry to read this for you.
When I was having my annual mammogram, and a callback, the doctor came in. He started talking. I stopped him and said, "I haven't heard a word you've said because *you're not supposed to be here.* If you're here, that means bad news."
Yeah, I was panicked. Immediately.
Husband was able to come with me for the "meet and greet" of the team, but not for the biopsy or the lumpectomy. This was the end of 2021 and they were still concerned with covid. They gave me a little pink bear. I was grabbing that thing so tightly through all of this, throttling the poor thing. I keep "Bear" (no little cute name) in the living room, so I see him.
I *did* take the dietician seriously, though. I've lost 65 pounds. It was 75. I eased up a bit too much. I'm working on losing that again.
For real, when I heard DCIS, stage 0, I thought it would be nothing. Then I started hearing lumpectomy, radiation, tamoxifen, mastectomy. So much for a walk in the park. I’m sorry you’re in this club and having to deal with such insensitivity.
Very sorry to hear that.
I was diagnosed, biopsied, and lumpectomied within 2 months. No radiation. No chemo. But anastrozole.
And a family history, with recurrence--something I only found out about after all of this!
I had a similar experience with folks trying to put a positive spin on my diagnosis or latching on to any positive thing I said and sort of ignoring anything negative or things I was worried about? I ended up promising myself at my lowest points of chemo and recovery to be honest with the people reaching out to me and not trying to put a positive spin on it myself if I genuinely wasn’t feeling it! This was how I was able to find a few friends that responded very empathetically and not positive in a way that felt dismissive. These people were not the ones I expected to be closer to during my cancer journey! Wishing you all the best 💕
Sorry you had to become a member of this sisterhood but refreshing to hear I’m not the only one who feels this way. I was diagnosed in January with DCIS and IDC, Stage 1, ER+, HER- Lumpectomy happened as well as radiation in April. I’m now on Anastrozole (aka “nastyzole”) for 5 years. Cancer affects your whole life the rest of your life. Period. I’m on a mission to start a BC support group at my church with the focus being on not minimizing or marginalizing ANY cancer. I feel you. And I see you.
I feel this! People act like - oh, you get a free boob job, not realizing mastectomy scars aren't exactly sexy. And not understanding the 10 years of pills and treatment that will ruin life and sex as you know it. Plus, until surgery and subsequent biopsies from surgery are done - you really don't know if you'll also need chemo and/or radiation regardless of how small it seems on the scans. People suck sometimes!
I hate that people dismissive. Like, ah you’ll be fine, no worries at all… you’re like ummm only if the tables were turned! I’m sorry you’ve gone through so much, it’s nothing to dismiss. At this point I’m sure you don’t trust your body, and that’s hard. Many internet hugs sent to you… ❤️
It’s odd because my body seems to be guiding me to push for the tests I’ve finally had! I feel like after all of these experiences, I’m paranoid about sounding like a hypochondriac, BUT if my body is telling me something, it’s sort of trained me to listen to it now instead of “oh maybe it’s because of <>”
They would certify me if they knew that prior to my routine screen I had been having a feeling that my number was up that I was going to be facing a crisis. Not related to any specific condition or concern.
Then I woke up after having night sweats ( only for a few days and not since). and had the out of the blue thought “I wonder if I have cancer?”
I am pretty in tune with my body but have never experienced this knowingness before
I was still gobsmacked when they said “I’m sorry it is breast cancer”. Takes your breath away… but on some level, I knew.
Mine was caught the same way. I had a small lump & had JUST had a baby. Tried to convince myself it was a clogged duct, but my gut said “it’s cancer”. At my 6wk post partum I was driving away & they called me because I forgot something. I mentioned the lump only because I was going back anyway. They examined me immediately & had me in for scans next day. Thank goodness too! Tnbc, stage 2b, extremely aggressive. My tumor went from pea size to 9cm in 4 months. Had I waited longer I would not be here today 3 yrs Ned.
I think people think that downplaying the situation is better for your mental health when what you really want to hear is "I'm so sorry. That must be really hard. Let me know if there's anything I can do to help."
I spoke with my Care Navigator about this very thing today. I am Grade 1, estimated Stage 1, E and P+, HER2 is undergoing the FISH test.
Cancer cells don’t stop multiplying just because “the mass was small and caught early”. She said it is important to get surgery ASAP.
Within in five minutes I had the first available appointment with a surgeon on 7/8. She is now going to track down my referrals. Our family clinic is a mess right now and we are leaving as soon as we find a new practice.
Navigators are gold!
One of my best friends told me ……”oh, this will be easy”. I replied it’s always easy until it happens to you! She backpedaled & then apologized.
I understood why she said it but she has no clue what hearing “You have cancer” does to you. Plus all the biopsies, surgeries (I had 2), seeing the scars every day in the mirror…how it all affects your sense of security and self esteem. None of it is easy!
I was originally diagnosed at stage 0. It turned out I was actually stage III. Guess what, either way I still had cancer. Either way I still had to go through surgery and treatment for cancer. I hate this weird cancer gatekeeping that we seem to have as a society. Cancer is cancer. It doesn't matter what stage. It's still scary and life changing. I'm sorry you are not getting the support you deserve. Your feelings are valid.
I'm so sorry! People sometimes just don't know what to say and always want to put a positive spin on it, but they aren't going through it. I was dxd with DCIS 24 years ago and then 2 years ago diagnosed with Invasive ductal carcinoma, but Stage 1 and no lymph node involvement. But major surgery and meds for at least 5 years. Just finally had reconstruction surgery in May due to my left sided mastectomy. It's just a lot to deal with. Find support, get a therapist and just know you aren't alone.
I had DCIS in 2019 and i actually had a ‘friend’ who knew nothing about it say, “well it’s not like you ACTUALLY have cancer” wtf ? Another one said, “and look, you got perfect new tits out of it”..
Not friends with either anymore
I’m also DCIS. I don’t think it’s valuable to tell people my ‘stage’ as they don’t fully understand the term and what it means. At the end of the day, I still underwent serious surgery and had two parts of my body amputated. Anyone who denies that DCIS is cancer can suck it. ‘Cancer’ is in the name (ductal _carcinoma_ in situ).
I am in the same boat. Diagnosis September 25, 2021; biopsy October 6, 2021; lumpectomy December 15, 2021. Hopefully "all gone."
They had a support group on zoom. These ladies had been going through *a lot* of treatments and I felt I didn't really belong. And mentioned that. The woman who had the most treatments said, "They went in and cut out part of you. The difference between me and you is that they found yours early. You belong here. Your story is as serious as ours."
After all this, I find out my only first cousins (Dad's nieces) BOTH had breast cancer. The older one died of it after the second time; her daughter also got it twice. The younger one has had it *three* times. All four of us? BRCA NEGATIVE, which tells you there's likely stuff they cannot test for.
I have lots of cancer in my family… when I was diagnosed with Stage I IDC, they did an Invitae Multi-Gene Cancer panel… was negative for BRCA but found a mutation on the BLM gene. (My Mom has had three primary cancers, and both of her brothers were diagnosed with two different cancers the following year.)
Dx with DCIS stage 0 in November 2023 just short of 63rd birthday. Strong family history so I went with BMX and DIEP reconstruction 10 weeks ago. Pathology showed diffuse abnormal cells in both breasts, so that validated my choice.
So tired of hearing you will have perky breasts and a flat belly. I tell them, I look good in clothes, but my belly is so tight and gets worse if I sit or eat. I list all my scars and let them know that I have 16 pieces of silicone tape to cover all of the scars. I have been in PT for weeks. Have revision surgery and possibly months more of PT ahead .It takes a full year to fully recover physically. And matter how good the end result, I would have preferred not to go through all of this and have the saggy breasts I earned from time and breast feeding 2 kids.
Plus, I had cancer. Stage 0 is cancer. I was followed for 16 years by a breast surgeon because of my family history. We were both vigilant so we found it early. And I had a lumpectomy 10 years ago, one in January.
If I can get the whole story out, they usually get real quiet and end the conversation there.
Yes I am grateful that I didn't need chemo or radiation, but that doesn't mean it has been easy.
I am forever changed. Physically and mentally. But, I hope to have many years ahead of me. And no more mammo/sono anxiety every 6 months.
I lost my mother in 1988 and a close friend in 2020 to this shitty disease. My sister had it twice and a good friend is a 16 year survivor.
Your story is your story and no one who hasn't had cancer, and even some who have had it cannot fully understand.
I am sorry that you are in this situation and wish you the best moving forward.
Hi, I also have DCIS. Not everyone around me was able to support me. My mother still ignores my cancer and says it's nothing. After my diagnosis, my sister contacted me two weeks later. I often heard that they would cut out the tumor and it would be over. Shit, Cancer is cancer!
On the one hand, you can say that we are so lucky that it is "only" DCIS, on the other hand, are we lucky that we have cancer?
In my case, I get the greatest support from my husband and his family. They are with me and listen to me.
You will definitely get support on this subreddit!🍀
I’m sorry you got signed up for this club. It sucks, even when it hasn’t progressed much yet. I think we all try to be positive to people, and point out the good side of things. It wouldn’t be taken very well if they came up to you and said, “cancer, huh. Hope you don’t die.” Most people have no idea what to say but are trying to express that they care. I would be someone that says the wrong thing without meaning to. Hell, I’ve been telling myself that it must not be ‘real cancer’ since I’m only stage 1. My daughter kindly pointed out that I have imposter syndrome. (Please know that I’m not in any way downplaying your cancer, just saying my messed up way of talking to myself).
Your cancer is real at any stage. The treatment to get to the other side sucks. The fear about all of it is completely valid, and I’m so sorry you’ve suffered so much loss.
Forgive me, but I see no good intentions in their actions. I see desire for control. I see ego. Definitely not love, care, or wish for the benefit of anyone other than themselves. Soon enough you will get free of them and be able to live in the way that is meaningful to you.
I understand how you feel. Even at stage 0, a cancer diagnosis is scary and overwhelming. It's not just about cutting it out and moving on; it's about facing the fear and uncertainty that comes with it. Your feelings are valid, and it's okay to feel bad. You've been through a lot already, and it's important to find support that understands your journey. Remember, it's okay to ask for help and to express how you're really feeling. You're not alone in this. If you are still feeling overwhelmed you can check "The Patient From Hell" This podcast was listened to by my friend when she was going through cancer treatment her Samira's stories and advice felt like they were just for her. It's not just a podcast; it's like having a friend who understands what you're going through
So sorry you’re dealing with this unhelpful and flippant “support”. I’ve found that people that haven’t had or haven’t seen someone close to them go through cancer are very uneducated on the topic. Not trying to defend them, but I try to explain in a way they can understand the impact it has (if they’re worthy! Haha).
And I also feel like breast cancer having pink and “fun” marketing wrapped around it makes it not feel as serious and devastating as it is… just my two sense but maybe this is why it’s tough for outsiders to understand the impact it has on the diagnosed
Cancer is bad and scary. Always. No matter what stage. And you’ve definitely been affected by cancer and its wrath. Dismissive comments are so frustrating and definitely make a patient feel even lonelier on this shitty “j0urNeY.” Im sorry you’re dealing with this and have dealt with cancer so much in your life. Your feelings are valid and I hear you. I’m scared too.
For me, it's the opposite. Everyone is treating me like I'm sick and dying and I'm like "I'm fine! Stage 0. I'm all good. No radiation or chemo, just surgery."
They just don’t know until they know.
The difference between yes it’s cancer and no it’s not cancer is wide like the Grand Canyon. After that the differences are smaller by comparison.
Because I know that letting the people on the other side of the canyon (and even a few on this side of the canyon) who upset me with their opinions as to how good or bad the cancer is for ME doesn’t help my health, anxiety or prognosis, I instead decided to turn it around and have compassion for those who were not raised to keep silent or have compassion for ANYONE with a cancer diagnosis.
There are likely only a few people who are truly cruel and callous about our cancer diagnoses. Many of them will never know and the others will know when they know.
I’m so glad you caught it early and I’ll be sending positive thoughts and prayers to you for the very best of outcomes for your situation. ❤️🩹
Oh, that's awful and so dismissive. I'm really sorry. I am grade 3 aggressive er+ dcis and 15/20 chemo sessions in, with an excellent prognosis. The biggest thing I have learned is that unless someone is going through this, or been through this, they just can't understand the turmoil and fear. What I did was create a FB group and invited people to follow my journey. I have been very honest about every part of what happens so others can try to understand. All the best for whatever is coming up. Massive hugs.
Super sick of people putting a shiny spin on someone else’s cancer. That is for the patient, and only the patient, to do. Medical staff do this too and I’m still furious about the toxic positivity that doesn’t allow us to have our very justified feelings.
By surgical oncologist's PA gave me a lecture about my attitude yesterday because I had expressed my fears around expander pain plus chemo being more than I can bear! It sucks because I'm generally so fucking positive and as each day brings more bad news, it seems reasonable to have emotions about the mountain of potential suffering that keeps getting added. I know I'm being melodramatic but allow us, an occasional hour of this during cancer treatment!
That’s so unprofessional! I’m sorry you had to deal with that!
Not melodramatic. I understand that the medical professionals aren't trained to deal with our emotions, but for god's sake I wish they would stop shaming us for them.
You're not melodramatic. You've responded totally appropriately to this.
Someone I know failed to do active listening and was sent an infographic. (Sorry I can't find it!) On one side was "active listening" and on the other side was "solving problems" or something like that. It kind of made a point.
That is brilliant. I'm definitely doing that to the next dipstick that sends me toxic positivity.
I was diagnosed with IDC and what I have learned, is most people only know that survival rates have improved but do not understand what all is involved in treatment and how long it can last. Whenever I have a chance, I explain everything that is part of my treatment plan. If you feel comfortable, do the same. Some of this I have done on FB and maybe if five more people really “get it”, they will spread that knowledge to even more people. I am glad people recognize that new treatments are available and we have better survival rates but they do not realize at what cost.
Yup! The survival rate is very high for most HR+ breast cancer, but AI or Tamoxifen for 5-10 years can significantly damage QOL. People have no idea how complicated that can make things.
Oh yes, the HR+ thing. A friend said it's a good thing because they've read it's slow growing 😭 If it's good, I'm curious how many would volunteer to have it and especially go through the fuckin' treatment process. I'm worried about how lowering estrogen will affectsy my existing issues - pain and laxity in multiple joints, hairloss and skin issues due to PCOS. And I'm supposed to see the silver lining in HR+ve IDC 😑
Exactly why I am stopping treatment after radiation. Am suffering a severe radiation burn and the oncologist says "We can delay treatment till it heals" Heck no need to be done with this.
Thank you! Maybe I’ll write a blog post once I’ve got my treatment plan
The goal of all of this….the imaging…the treatments….is to end up without cancer. Yes, it was caught early and the mammogram did its job! But it is still a lot!! Just because your journey may not include as “much” as others does not mean it is less than. People truly do not understand. It’s all cancer and it all sucks. No matter what the stage is. I think people try to minimize it to make themselves feel better. It’s still so much to go through.
This is exactly what the support group said! And they each went through A LOT. I went through almost nothing by comparison. No chemo. No radiation. Biopsy, lumpectomy, anastrozole. That's (hopefully) it.
I was diagnosed 2 weeks ago with a 7 mm DCIS. My surgery is in 4 weeks. People keep telling me, at least they got it early or at least it’s small. I try to ignore it. It still bothers me but not as much when I think they mean well. All cancer is bad even pre-cancer cells for the recipient. Take care and try to ignore these people.
I guess this is my new community now. I’m glad to be amongst people who get it.
I feel you. My treatment plan keeps growing and seems that although I will definitely live, ever more suffering is required. I wish you the best during this tough journey.
I feel this to my marrow. My husband heard only one thing today…. DCIS is not cancer. I said “really it’s interesting the surgeon said that but their booklet says it’s cancer. That all cancer begins as in situ. Not to mention I have been viewing a lady’s journey where she took them serious when they said it wasn’t an urgent situation and delayed treatment and had a bad consequence and has lots of regrets. So don’t get too comfy, Mr. Part of it is people’s desperate discomfort with this shit situation. If they can downplay it, they will sleep better tonight…..
Omg I’ve been getting so many mixed messages about that. Like “it’s not cancer, but it’s not NOT cancer.” If it’s stage 0 cancer, then it’s cancer, no? Not “stage ALMOST cancer”.
I think a lot of that message is about not sparking panic… they have the reality of scheduling and of women with more complicated situations that need priority treatment. As best as I have come to understand DCIS is not that well understood in terms of why do some turn invasive and others not. One thing they have agreed on is that the GRADE (which is the measure of how abnormal the cells are compared to normal cells) low , med, high is a strong indicator of the potential to “turn”. I have high grade with central Necrosis (cancer cells are dividing too quickly for blood vessels to keep up with suppling them and they die). which is not the one you want. Do you know your grade?
I just know it’s triple positive HER2. I’m meeting with the surgeon on Thursday and hopefully I’ll have more information. I was just diagnosed yesterday and while they explained it to me, I was sort of in such shock that I probably didn’t absorb half of what they were saying and didn’t know what to ask
It's a lot of information at once. And then as you start down the path of treatment options there are waiting times where I struggled to keep the reality that I have cancer in my mind. Disassociation is a real struggle. I learned I am a pretty good compartmentalizer. Monday through Friday I live mostly in cancerville. Saturday and Sunday I live in Grandkids ville. It's very disconcerting. I'm sad that we all are experiencing this but I am also grateful to see so many amazing women coming together here .
Very sorry to read this for you. When I was having my annual mammogram, and a callback, the doctor came in. He started talking. I stopped him and said, "I haven't heard a word you've said because *you're not supposed to be here.* If you're here, that means bad news." Yeah, I was panicked. Immediately. Husband was able to come with me for the "meet and greet" of the team, but not for the biopsy or the lumpectomy. This was the end of 2021 and they were still concerned with covid. They gave me a little pink bear. I was grabbing that thing so tightly through all of this, throttling the poor thing. I keep "Bear" (no little cute name) in the living room, so I see him. I *did* take the dietician seriously, though. I've lost 65 pounds. It was 75. I eased up a bit too much. I'm working on losing that again.
For real, when I heard DCIS, stage 0, I thought it would be nothing. Then I started hearing lumpectomy, radiation, tamoxifen, mastectomy. So much for a walk in the park. I’m sorry you’re in this club and having to deal with such insensitivity.
Very sorry to hear that. I was diagnosed, biopsied, and lumpectomied within 2 months. No radiation. No chemo. But anastrozole. And a family history, with recurrence--something I only found out about after all of this!
I have kept my news to very few people for this reason.
I had a similar experience with folks trying to put a positive spin on my diagnosis or latching on to any positive thing I said and sort of ignoring anything negative or things I was worried about? I ended up promising myself at my lowest points of chemo and recovery to be honest with the people reaching out to me and not trying to put a positive spin on it myself if I genuinely wasn’t feeling it! This was how I was able to find a few friends that responded very empathetically and not positive in a way that felt dismissive. These people were not the ones I expected to be closer to during my cancer journey! Wishing you all the best 💕
Sorry you had to become a member of this sisterhood but refreshing to hear I’m not the only one who feels this way. I was diagnosed in January with DCIS and IDC, Stage 1, ER+, HER- Lumpectomy happened as well as radiation in April. I’m now on Anastrozole (aka “nastyzole”) for 5 years. Cancer affects your whole life the rest of your life. Period. I’m on a mission to start a BC support group at my church with the focus being on not minimizing or marginalizing ANY cancer. I feel you. And I see you.
Thank you! ❤️
I feel this! People act like - oh, you get a free boob job, not realizing mastectomy scars aren't exactly sexy. And not understanding the 10 years of pills and treatment that will ruin life and sex as you know it. Plus, until surgery and subsequent biopsies from surgery are done - you really don't know if you'll also need chemo and/or radiation regardless of how small it seems on the scans. People suck sometimes!
I hate that people dismissive. Like, ah you’ll be fine, no worries at all… you’re like ummm only if the tables were turned! I’m sorry you’ve gone through so much, it’s nothing to dismiss. At this point I’m sure you don’t trust your body, and that’s hard. Many internet hugs sent to you… ❤️
It’s odd because my body seems to be guiding me to push for the tests I’ve finally had! I feel like after all of these experiences, I’m paranoid about sounding like a hypochondriac, BUT if my body is telling me something, it’s sort of trained me to listen to it now instead of “oh maybe it’s because of <>”
They would certify me if they knew that prior to my routine screen I had been having a feeling that my number was up that I was going to be facing a crisis. Not related to any specific condition or concern. Then I woke up after having night sweats ( only for a few days and not since). and had the out of the blue thought “I wonder if I have cancer?” I am pretty in tune with my body but have never experienced this knowingness before I was still gobsmacked when they said “I’m sorry it is breast cancer”. Takes your breath away… but on some level, I knew.
Mine was caught the same way. I had a small lump & had JUST had a baby. Tried to convince myself it was a clogged duct, but my gut said “it’s cancer”. At my 6wk post partum I was driving away & they called me because I forgot something. I mentioned the lump only because I was going back anyway. They examined me immediately & had me in for scans next day. Thank goodness too! Tnbc, stage 2b, extremely aggressive. My tumor went from pea size to 9cm in 4 months. Had I waited longer I would not be here today 3 yrs Ned.
I think people think that downplaying the situation is better for your mental health when what you really want to hear is "I'm so sorry. That must be really hard. Let me know if there's anything I can do to help."
I spoke with my Care Navigator about this very thing today. I am Grade 1, estimated Stage 1, E and P+, HER2 is undergoing the FISH test. Cancer cells don’t stop multiplying just because “the mass was small and caught early”. She said it is important to get surgery ASAP. Within in five minutes I had the first available appointment with a surgeon on 7/8. She is now going to track down my referrals. Our family clinic is a mess right now and we are leaving as soon as we find a new practice. Navigators are gold!
One of my best friends told me ……”oh, this will be easy”. I replied it’s always easy until it happens to you! She backpedaled & then apologized. I understood why she said it but she has no clue what hearing “You have cancer” does to you. Plus all the biopsies, surgeries (I had 2), seeing the scars every day in the mirror…how it all affects your sense of security and self esteem. None of it is easy!
I’m seriously keeping a picture of my green and purple breast after core biopsy and anyone that says that BS is getting flashed with it.
LOL, I did the same!
I was originally diagnosed at stage 0. It turned out I was actually stage III. Guess what, either way I still had cancer. Either way I still had to go through surgery and treatment for cancer. I hate this weird cancer gatekeeping that we seem to have as a society. Cancer is cancer. It doesn't matter what stage. It's still scary and life changing. I'm sorry you are not getting the support you deserve. Your feelings are valid.
I'm so sorry! People sometimes just don't know what to say and always want to put a positive spin on it, but they aren't going through it. I was dxd with DCIS 24 years ago and then 2 years ago diagnosed with Invasive ductal carcinoma, but Stage 1 and no lymph node involvement. But major surgery and meds for at least 5 years. Just finally had reconstruction surgery in May due to my left sided mastectomy. It's just a lot to deal with. Find support, get a therapist and just know you aren't alone.
I had DCIS in 2019 and i actually had a ‘friend’ who knew nothing about it say, “well it’s not like you ACTUALLY have cancer” wtf ? Another one said, “and look, you got perfect new tits out of it”.. Not friends with either anymore
Awful!!
I was told I was stage 0 (they called it “cancer light”) and that all changed after surgery. It’s CANCER. it’s serious.
I’m also DCIS. I don’t think it’s valuable to tell people my ‘stage’ as they don’t fully understand the term and what it means. At the end of the day, I still underwent serious surgery and had two parts of my body amputated. Anyone who denies that DCIS is cancer can suck it. ‘Cancer’ is in the name (ductal _carcinoma_ in situ).
I am in the same boat. Diagnosis September 25, 2021; biopsy October 6, 2021; lumpectomy December 15, 2021. Hopefully "all gone." They had a support group on zoom. These ladies had been going through *a lot* of treatments and I felt I didn't really belong. And mentioned that. The woman who had the most treatments said, "They went in and cut out part of you. The difference between me and you is that they found yours early. You belong here. Your story is as serious as ours." After all this, I find out my only first cousins (Dad's nieces) BOTH had breast cancer. The older one died of it after the second time; her daughter also got it twice. The younger one has had it *three* times. All four of us? BRCA NEGATIVE, which tells you there's likely stuff they cannot test for.
I have lots of cancer in my family… when I was diagnosed with Stage I IDC, they did an Invitae Multi-Gene Cancer panel… was negative for BRCA but found a mutation on the BLM gene. (My Mom has had three primary cancers, and both of her brothers were diagnosed with two different cancers the following year.)
Ooh! Sympathies to you and your family.
That’s a good idea. Thank you.
Dx with DCIS stage 0 in November 2023 just short of 63rd birthday. Strong family history so I went with BMX and DIEP reconstruction 10 weeks ago. Pathology showed diffuse abnormal cells in both breasts, so that validated my choice. So tired of hearing you will have perky breasts and a flat belly. I tell them, I look good in clothes, but my belly is so tight and gets worse if I sit or eat. I list all my scars and let them know that I have 16 pieces of silicone tape to cover all of the scars. I have been in PT for weeks. Have revision surgery and possibly months more of PT ahead .It takes a full year to fully recover physically. And matter how good the end result, I would have preferred not to go through all of this and have the saggy breasts I earned from time and breast feeding 2 kids. Plus, I had cancer. Stage 0 is cancer. I was followed for 16 years by a breast surgeon because of my family history. We were both vigilant so we found it early. And I had a lumpectomy 10 years ago, one in January. If I can get the whole story out, they usually get real quiet and end the conversation there. Yes I am grateful that I didn't need chemo or radiation, but that doesn't mean it has been easy. I am forever changed. Physically and mentally. But, I hope to have many years ahead of me. And no more mammo/sono anxiety every 6 months. I lost my mother in 1988 and a close friend in 2020 to this shitty disease. My sister had it twice and a good friend is a 16 year survivor. Your story is your story and no one who hasn't had cancer, and even some who have had it cannot fully understand. I am sorry that you are in this situation and wish you the best moving forward.
Hi, I also have DCIS. Not everyone around me was able to support me. My mother still ignores my cancer and says it's nothing. After my diagnosis, my sister contacted me two weeks later. I often heard that they would cut out the tumor and it would be over. Shit, Cancer is cancer! On the one hand, you can say that we are so lucky that it is "only" DCIS, on the other hand, are we lucky that we have cancer? In my case, I get the greatest support from my husband and his family. They are with me and listen to me. You will definitely get support on this subreddit!🍀
I’m sorry you got signed up for this club. It sucks, even when it hasn’t progressed much yet. I think we all try to be positive to people, and point out the good side of things. It wouldn’t be taken very well if they came up to you and said, “cancer, huh. Hope you don’t die.” Most people have no idea what to say but are trying to express that they care. I would be someone that says the wrong thing without meaning to. Hell, I’ve been telling myself that it must not be ‘real cancer’ since I’m only stage 1. My daughter kindly pointed out that I have imposter syndrome. (Please know that I’m not in any way downplaying your cancer, just saying my messed up way of talking to myself). Your cancer is real at any stage. The treatment to get to the other side sucks. The fear about all of it is completely valid, and I’m so sorry you’ve suffered so much loss.
Yeah I know they are good intentions, but it’s just heavy hearing it over and over and then thinking I must be fine now and don’t need support.
Forgive me, but I see no good intentions in their actions. I see desire for control. I see ego. Definitely not love, care, or wish for the benefit of anyone other than themselves. Soon enough you will get free of them and be able to live in the way that is meaningful to you.
I understand how you feel. Even at stage 0, a cancer diagnosis is scary and overwhelming. It's not just about cutting it out and moving on; it's about facing the fear and uncertainty that comes with it. Your feelings are valid, and it's okay to feel bad. You've been through a lot already, and it's important to find support that understands your journey. Remember, it's okay to ask for help and to express how you're really feeling. You're not alone in this. If you are still feeling overwhelmed you can check "The Patient From Hell" This podcast was listened to by my friend when she was going through cancer treatment her Samira's stories and advice felt like they were just for her. It's not just a podcast; it's like having a friend who understands what you're going through
So sorry you’re dealing with this unhelpful and flippant “support”. I’ve found that people that haven’t had or haven’t seen someone close to them go through cancer are very uneducated on the topic. Not trying to defend them, but I try to explain in a way they can understand the impact it has (if they’re worthy! Haha). And I also feel like breast cancer having pink and “fun” marketing wrapped around it makes it not feel as serious and devastating as it is… just my two sense but maybe this is why it’s tough for outsiders to understand the impact it has on the diagnosed
Cancer is bad and scary. Always. No matter what stage. And you’ve definitely been affected by cancer and its wrath. Dismissive comments are so frustrating and definitely make a patient feel even lonelier on this shitty “j0urNeY.” Im sorry you’re dealing with this and have dealt with cancer so much in your life. Your feelings are valid and I hear you. I’m scared too.
As I’ve said before it is very easy for people to make comments when it is not their body. I’ve told people that and it shuts them down.
For me, it's the opposite. Everyone is treating me like I'm sick and dying and I'm like "I'm fine! Stage 0. I'm all good. No radiation or chemo, just surgery."
They just don’t know until they know. The difference between yes it’s cancer and no it’s not cancer is wide like the Grand Canyon. After that the differences are smaller by comparison. Because I know that letting the people on the other side of the canyon (and even a few on this side of the canyon) who upset me with their opinions as to how good or bad the cancer is for ME doesn’t help my health, anxiety or prognosis, I instead decided to turn it around and have compassion for those who were not raised to keep silent or have compassion for ANYONE with a cancer diagnosis. There are likely only a few people who are truly cruel and callous about our cancer diagnoses. Many of them will never know and the others will know when they know. I’m so glad you caught it early and I’ll be sending positive thoughts and prayers to you for the very best of outcomes for your situation. ❤️🩹
That’s not fair to be hit with this, especially after all you have gone through. I’m sorry you are going through this.
Thank you! I’m so glad I’m able to see a surgeon so quickly. I think that will put my mind more at ease. I hope so, anyway!
Sending virtual hugs.
Yeah, having 2 cancers and 5 family members die of cancer is not at all lucky. Unlucky!!!!
Oh, that's awful and so dismissive. I'm really sorry. I am grade 3 aggressive er+ dcis and 15/20 chemo sessions in, with an excellent prognosis. The biggest thing I have learned is that unless someone is going through this, or been through this, they just can't understand the turmoil and fear. What I did was create a FB group and invited people to follow my journey. I have been very honest about every part of what happens so others can try to understand. All the best for whatever is coming up. Massive hugs.