I don't feel like a true survivor
Hello,
I am 39 years old and brac1 positive. For the past 4 years I have been receiving surveillance tests. On September 5, 2013 I was diagnosed with Stage 1, grade 3 DCIS, triple negative. Due to my tumor size (4mm) and being brac1, my surgeon wanted me to get a mastectomy ASAP because the tumor was aggressive and would double in size within two months. I decided to get a bilateral mastectomy due to my high increase rate of cancer returning. So I had surgery on September 20th and my nodes were clear. Today, my surgeon gave me the good news that the tumor was still only 4mm and no chemotherapy is needed. However, they found extensive DCIS malignant cells throughout the specimen. I am grateful I do not have to endure anymore treatment given the surgery was enough. Despite being diagnosed with breast cancer I do not feel like a true survivor because I don't need any further treatment. I am reaching out to find out if anybody else's cancer was detected early enough that no further treatment was necessary? If so, how do you feel? Do u feel like a survivor? Does anybody understand how I feel? Thanks
Comments
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I understand how you feel. DCIS, mastectomy, Tamox for a while just doesn't compare to what some of these folks have had to go through. I don't use the word 'survivor' to describe myself. However, now we are both in a camp that has been warned and knows that the beast could return someday. Even though the odds of that happening are low, the worry is always here. Used to be, prior to DCIS dx, my aches and pains were all age related, now my aches and pains make me wonder if cancer has returned.
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you probably just had better docs than me. mine just sucked in beginning. make me a casserole and we will call it even
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Nevermind the title "survivor" or how much you had to do to get there, you were given the opportunity to SAVE YOUR LIFE. Rejoice!!! Smell the roses!
Besides that, a bilateral mastectomy is a BIG DEAL for anyone, so you have gone through something big. And chances are that they'll want you to have ovaries removed, so that's another big deal.
On top of that, the recurrence risk post mastectomy for someone BRCA positive is higher than the general bc population, so you still have some worries, although you have taken away most of the risk.
Wishing you an easy recovery. You don't need to compare yourself to others. You went through a lot, and still have plenty to deal with.
One question, are you Stage 1 or Stage 0? If Stage 1, you still have to worry about mets. If Stage 0, you don't. Not clear from your statement. I'm only asking this, because it's another thing you need to worry about--so you are a survivor!
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I think of myself as NED: No evidence of disease.
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@ballet12-
I was diagnosed with dcis, stage 1, grade 3 with my tumor size at 4mm. However, my doctor said the pathology report showed extensive dcis throughout the specimen but that component of it is stage 0 and thus does not add to the tumor size nor the need for any treatment.
You mentioned having to worry about mets? What is that?
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Hi Spunky,
You had cancer and endured major surgery and treatment for that cancer.
You are a survivor in my book! Never diminish all you have gone through with this cancer diagnosis. I'm so glad you don't have to go through chemo.
hugs,
Bren
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I am someone who needed all the "other stuff" however you sure are a true survivor !!! The diagnosos is not any less scary, the future not any less scary !!! We are all breast cancer survivor and in it together we just have different treatment
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Spunky55,
This isn't a contest to see how much we can each endure. This is a beast of a disease and when I hear about someone like you who has the knowledge of your genetics and at a young age, taking steps to reduce your risk, I am happy. You can call yourself anything you want to. You are brilliant!
Love, and only love,
Sandra
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mets is metastatic..meaning has been found or spread to other parts of the body. Can go thru the lymph system, which if your nodes were negative, mine too, then odds are slim. Or thru the bloodstream. I guess if the margins were clear (they got the whole thing as well as clean tissue all around it) then you are good. Get a 2d opinion if you have any doubts.
My original diagnosis was similar to yours and thought I was pathetic for being on here while so many people here on the boards are going thru so much more. Even after I had to have the bmx and clear nodes, my oncotype test score was a 2, so no chemo. Then felt like a heel because the others are doing chemo etc. I feel better about it now- reconstruction and 5-10 years of hormone drug therapy makes me a cancer patient and survivor. As are you.
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Oh, sweetie, don't discount what you've been through. You received a cancer diagnosis and had your boobs cut off. That's no small stuff. I think you may have a bit of survivors guilt, as odd as that sounds. I'm almost 4 years out and can see things a little different now than I could at the beginning. I understand how you feel. I live in a small community, worked with the public so you see and hear everything. There were 3 other ladies diagnosed at the same time I was. One had her bmx a day apart from mine, at the same hospital with the same surgeon. Our similarities ended there. Her pathology was much worse than mine. She had chemo, herceptin for a year, and her expanders got infected and had to be removed. I had a stage 1 diagnosis with no node involvement and no chemo. Other than a little pain, no problems with the reconstruction. Every time I saw her I felt like crying. I felt guilty that I had it so easy and she had it so hard, but now she is doing great and hasn't aged a bit or gained any weight, she still has estrogen.
The second lady worked at my onco office so I saw her often. She had repeated rounds of chemo because it kept coming back. I saw her in October, she looked better than she had in months. Her hair was actually growing back. I was so happy for her, she was happy and healthy. That was probably the first time I had seen her that I didn't feel guilty, in 2 years. One month later she died. I cried for her. Her death showed me how life is short and we need to live every day to the fullest. The third lady has recurred also but for the time being she is ok. Now that a little time has passed I can see that it's a crap shoot. There is no rhyme or reason of how we each are effected. It's kinda like being a little pregnant, there's no such thing. We all have different journeys and never know where that journey will take us. Don't waste time with survivors guilt. Instead take it as a wake up call that life is short, regardless of our pathology. Hugs, Susie -
It is a shame however it is the medical establishment that makes you feel this way... you had a loss a GREAT loss and you took the steps to address this cancer - steps that are hard and outcomes that create an incredible sadness... but we aren't told we will experience a psychological loss... please see a therapist to help you with this incredible loss...
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spunky, sorry that you've had to join us here! Personally, I don't much like the word "survivor" and I never think of myself as a "survivor" But then I think that would be true whatever my diagnosis. The simple fact is that you've had breast cancer. If "survivor" is a word that is meaningful to you, then you have every right to use it!
I have noticed that there seems to be some confusion in a few of these posts about DCIS vs. IDC. Since this is the DCIS forum and I wouldn't want those newly diagnosed with DCIS to misunderstand what DCIS is (and isn't), let me try to clarify.
DCIS is Stage 0 pre-invasive cancer. DCIS cancer cells are confined to the ducts of the breast and they cannot move into the body, either through the nodes or through the bloodstream. Therefore DCIS cannot develop into mets. DCIS is cancer that is fully confined to the breast and therefore treatment is targetted at the breast. For this reason, systemic treatments such as chemo are not required for DCIS. There is an Oncotype test that is used for DCIS (not frequently since it's still very new); the purpose is to help those who've had a lumpectomy for DCIS determine if radiation would be beneficial/advisable. This is different from the Oncotype tes that is used for invasive cancer, which helps with the chemo decision.
IDC is invasive cancer. This means that the cancer cells are in the open breast tissue, which in turn means that IDC cancer cells can move into the nodes or into the bloodstream and can develop into mets. IDC is treated both locally (treatments to the breast) and systemically (treatments that move into the whole body, to address the risk that some IDC cells might have moved beyond the breast). The Oncotype test is often used for those who have estrogen positive IDC, to help determine if chemo would be beneficial/advisable. This is different from the Oncotype test used for DCIS. Staging for IDC starts at Stage I and goes to Stage IV (mets).
By definition, if someone is Stage I, it means that they have IDC, not DCIS - or at least not pure DCIS, since DCIS and IDC are often found together. When DCIS and IDC are found together, the staging and treatment plan and prognosis is based on the IDC; the DCIS is the lesser of the conditions and while it has to be surgically removed (which could change the surgery plan if the area of DCIS is large), whatever other treatments are given to address the IDC will be more than adequate to address the DCIS. When IDC is present in a tumor or area of cancer, any amount of DCIS also found is not factored into the staging - only the size of the invasive tumor is considered. If someone has the Oncotype test and the results are used to determine if chemo would be beneficial, this means that this individual had the IDC Onctotype test and therefore has a diagnosis of IDC.
spunky, since your doctor said that you are Stage I and since your doctor is talking separately about the widespread DCIS vs the 4mm tumor, my guess is that this 4mm tumor is IDC and that your diagnosis therefore is IDC. In the flurry of information that comes at us when we are first diagnosed, and since so many women have a combination of DCIS and IDC, it's very easy to get these confused. It happens all the time!
Hope that helps clarify.
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right...my oncotype test was based on the 'worst' of the 3 tumors- not the dcis (he said they dont ever oncotype on a dcis ), but the largest, ilc/idc that was found...if you have purely a dcis he should have made it stage 0 , so like beesie says, if you are stage 1, there must be something else going on...
I dont like the recent concept that dcis is not cancer. It is pre-cancer, you have to have surgery and radiation at a minimum for it, it can sometimes when removed be found to have micro invasions, etc...(not saying this from stuff on the boards-- but from things in the news over the last few months).
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spunky you are a survivor plan and simple. Your cancer was just different than others, which is how we all are. We are all individuals and all of our cancers are the same but yet different. So you didn't have chemo and lose your hair, you lost your breasts. I to feel like I am in a different category, I lost one breast had reconstruction, which is still a work in progress and that was it. No other treatment, not even hormone therapy. So I feel lucky that I didn't have to endure what some ladies have went through, but I am still a survivor!
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Spunky55 i agree w mrenee68.... Every woman has a different type of cancer whether it's DCIS stage 0 and all tests are negative to stage IV all tests are positive...we are all survivors because no matter how big or how small the little monster is, it has caused us to react in a way that will save our life. I too was diagnosed with DCIS, said was too large for lumpectomy, so 10 days ago was my surgery, I chose single mastectomy w immediate reconstruction and had sentinel node dissection and my lymph nodes were clear, my HER2 was negative and brca was negative and my cancer was now diagnosed as IDC and was only .4cm(4mm)... My therapy will b hormone therapy for 5 years(I havent started yet and will prob 4 weeks)no chemo.....do I consider myself a survivor? I may not have had to suffer like the majority of most women do, but I lost a breast, and I have to take a hormone treatment to prevent it from coming back....cancer did that...and I got it out, so yes, I am a survivor, cuz if i left it alone, it would have killed me....so you too, despite all odds, ARE a survivor as well, plain and simple....if it wasn't for cancer, you would still have your breasts..and you too, are fortunate you didnt have to endure like most women do. YOU ARE A SURVIVOR! Embrace it. You may not have won a marathon, but you did win the race against cancer
and btw I'm only 41 years old.... -
Hi, Spunky, when I was diagnosed about six years ago my cancer was in my right breast but a stage 0. The cancer was so small the size of a grain of rice. It was only the begining stages. Thank God!!!! I too have felt since my cancer was only a stage 0 that I should not be considered a survivor especially when there are sooo many women who have it sooo much worse than me. Dont get me wrong I am thankful and blessed for what I had but yet not "honored", lack of a better word to be considered a survivor. I know this sounds weird but I feel as though my cancer was not bad enough.
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You are a survivor. You'd be surprised how many people do nothing. My cousin biopsy came back cancer and she's done nothing. She said she doesn't want to have surgery and has just stopped going the doctor. I'm soooo angry at her. I also have an old good friend who had a lumpectomy last summer but the margins weren't clear.. She refused to go any further. She doesn't want them cutting into her anymore. So the fact that you were able to go through whatever treatment prescribed and complete it makes you a survivor in my eyes. I'm soo angry at both of these women
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I just found this thread, and I wish I found it earlier. I too "only have DCIS". That's what and how i tell people, I feel like that it's not really cancer since I didnt have chemo, lose my hair or need to take toxamfin. I did have a Dmx with immediate DEIP flap recon. I am still recovering from the surgery, but I am doing okay. I have been on a few forums, but it always seems like others have more issues or need more treatment than I do so I begin to feel a little guilty like what I am going through is not really cancer but just major surgery.
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Hi Spunky, I too was diagnosed with DCIS in my left breast after 4 years of close monitoring of my suspicious breast. I had calcifications through both breasts and had discharge from my left nipple for almost 3 years and I had started to have a little discharge from the rightside about a year ago. Within 7 months I went from no cancer to DCIS spread through more than a third of my left breast. I;m sure the right one was not far behind, so I chose to get a bilateral mastectomy with expanders in may of this year.
I developed a large area of necroitic tissue on my left breast. We waited to see if the breast would start to heal, some did , but mostly it got more nasty and started to smell awful. No infection, just the dead tissue and seroma stunk, and you can't get away from the smell 8 inches under your nose. I also had my stitches on the right open up 2x. the first time Dr re-stitched, the second time we were already planning surgery to debried the necrotic tissue, so she left it open and i had to pack it 2x a day for a week until the surgery. Everything seemed to be going ok. My new drains were removed and shortly after, I started to notice fluid building up on the left, called the Dr, went to the office and she drew the fluid out with a needle. This continued for weeks and I ended up with an infection in my left breast and had my expander removed at the end of July. I now have a hole in my left breast that seems like its taking forever to heal. I have to pack it once a day, and though its significantly smaller, it seems like its taking forever to heal (it's been 9 weeks).
I still want to finish reconstruction. Talked to a Plastic Surgeon today. He said to start filling the expander on the right side and have my breast Dr complete the reconstrution on that side, and in like 8 months he can put an implant in the left , but wants to do some kind of flap surgey on top to give me a more natural apperance on the left due to the deficit of tissue remaining after previous surgeries and scar tissue.
After all of that, I still dont feel like a "survivor". I didn't need chemo or radiation, and I am thankful for that every day. But its like I almost feel guilty talking about the issues I have had because they are related to the reconstruction part of my journey, the part that I voluntarily chose, the part that is not medically necesary. I've even had people say I should just quite trying the reconstruction and be happy with what I have, it could be worse than just no boobs. Like I don't know that and remind myself of that multpile times a day .Especially when I try to go buy a new blouse. I'm not a little girl. I'm a size 16 and had DD+ breast. They do not make clothing to fit big girls with little boobies. I've been living in big baggie T-shirts for 5 months now. Hard to feel femine like that. My Dr gave me fiberfill foobies, but in a lower cut shirt (which again, they all are, even the ones that weren't before the mastectomy) it is very obvious. I am going tomorrow to be fitted for prosthetics finally since I will be at least 8 months without on my left side, hopefully they will be more realistic. and here I am again feeling quilty about complaing anbout the vanity issues.
I do know through research that left untreated, DCIS can change, and by saying we are less of a survivor because we caught it at stage 0 istead would be like saying a stage 1 is less because they didn't make it to stage 2 and so on. But even though i know I made a brave, bold decision to remove my breast before anymore damage could be done I do Still feel like I got lucky with the baby cancer that doesnt really count.
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I just finished rads, and while I do not feel like a "survivor", I do feel like my DCIS was indeed cancer. I know that there are some who say DCIS is not a true cancer, but anything that requires us to go through any of these awful treatments, procedures and emotional rollercoaster imho is cancer. Changing the terminology does not change what we have all been going through. To all of my sisters here...I wish you the best and you are all in my thoughts and prayers! I do consider myself a "survivor" of the journey. -
I too, was ultimately Dx with DCIS.
Micro calcification was discovered when I had a routine Mammogram on one of the newest Digital Mammogram Machines, which had been installed in the new area I had moved to. They had my previous film, from where I used to go, which was from an analogue machine and they said there's every chance that my calcification was there, but they couldn't see it. Had I remained in that area, it is likely I would have gone back to that facility for my Mammogram, and who knows if it had been upgraded to one of those new machines.
What would have been found if, and when I eventually got Digitally tested? I don't even want to go there.
It wasn't till I had been called back, biopsied, and then waited for 11 long days to hear that I had DCIS Intermediate and High Grade. I was told to decide if I wanted to have a Lumpectomy with Rads, or a Mx with SNB. I chose the latter, then waited for nearly a month to have the surgery with my chosen Surgeon. It was Christmas, so I had to wait almost three more weeks to get the final Pathology.
My final pathology had no little surprises, Pure DCIS Grade 3 and of course the SNB was clear. It wasn't till that moment, that I could safely feel I could breathe normally again. It had taken almost 3 months to get here.
We all go through the same abject fear, of the Biopsies, the decision making process, and then the surgery. Then there is the adjustment to our New Normal. It's not till that final Pathology Report arrives that we find our path takes a different direction to the other sisters who have a Dx that stages their cancer.
When I tell people of my experience, I explain DCIS as a form of Breast Cancer that was contained in a duct. It was caught early, before it had a chance to become invasive, and I am so incredibly grateful for that! I am one of the very lucky ones.
I don't beat myself up because I was Dx stage 0. I am grateful every single day for that. -
thank you for saying you don't feel like a true survivor. WHen people asked me about being a survivor I could not relate as my DCIS was non invasive and stage 0. -
i am stage three. hate the word survivor. call myself a fighter -
I ran the Race for the Cure today, and after was chatting with a bunch of fellow survivors (not sure I like that term, but it seems to be in common usage). We spoke about our treatments, but not our diagnoses. I found that it seemed like whatever treatment you had, you felt like someone else had it worse - or in other words had more reason to be considered a "legitimate" survivor.
For example, I was talking to a woman who was BRCA+, and 4 years out from BMX and oopherectomy, but she was impressed I had done radiation and tamoxifen (which I think I would choose over bigger surgery any day!). I sometimes feel "inferior" because I didn't need chemo. Another woman with us who had done chemo, was comparing herself to a woman nearby wearing the gold beads indicative of Stage IV. We all have our journeys and I think that divisiveness is pointless - we've all be touched by this disease in some way, and we should all support each other as best we can. -
I'm in this same category and just say I was lucky it was found early and "so far so good." Don't know what's down the road. -
I am happy my cancer was caught so early and I did everything in my power to eliminate it. I feel like a survivor. You are a survivor. I try not to compare my diagnosis to that of others, I just thank God that I found it now instead of next year. We are all survivors. -
Like the other ladies said never diminish what you went through. When I was first diagnosed with DCIS my best friend (hmmm) who had Stage 3 BC double mastectomy, chemo, the works told my family in the waiting room during my lumpectomy that what I had wasn't really breast cancer. Yeah, ok, I get that you went through so much more than I did. I was lucky as heck that I didn't wait a year to have a mammogram because my story could be completely different had I waited. But I still went through similar emotions and struggles nonetheless. I was lucky and count my blessings every day.
Now about the title stuff - I never call myself a Survivor as I consider myself a Fighter. The way I see it is that I will always have the shadow of BC over me and will be prepared to continue the fight. -
Pamela, what a thoughtless thing for your best friend to say! I am so sorry that you will have that memory with you; so hard to forget that. As my MO stated, there is a spectrum of breast cancer and you have to place yourself on that spectrum to make the right treatment decisions. But it is breast cancer nonetheless and there are no guarantees for any of us on the spectrum regardless of our treatment. She also told me that my risk of recurrence is either 0% or 100%, depending on how things turn out. So that said, is living with breast cancer less of a struggle for someone at the low end of the spectrum? No, sadly. Someone on this board called themselves a thriver, not a survivor. I like that so very much more than "survivor".
Love and radiance to all!
MsP -
MsP,
Thank you - you made me smile with the Thriver title! Much more appropriate!
And, yes, it was totally thoughtless of her (especially because she works as a cancer patient support specialist) and I will remember that as long as I live. I've forgiven her in my heart but I won't forget it. I've learned alot about myself, my friends and family over the past few months. It's true that you learn quickly who your friends are in this world and while I may have had a few that stepped away from me I've also had some people that I barely knew that stepped in to show their concern. So it's all a lesson and a blessing! -
People will forget what you said, people will forget about what you did, but they will never forget how you made them feel...Maya Angelo
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