please stop minimizing my diagnosis
Comments
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Please forgive my rant...
This is an open letter to the health care professionals, authors and web sites that like to tell me that I "only" have DCIS, or worse yet, that my breast cancer isn't really cancer at all. Minimizing my diagnosis does not make me feel better, it infuriates me.
I have breast cancer. Please do not marginalize my diagnosis. I am one of the extremely fortunate individuals that have discovered the cancer early enough to avoid chemotherapy, and early enough to look at a recovery rate of nearly 100%. However, if I didn't really have breast cancer, I wouldn't have two large gashes across my breast. I wouldn't have one breast that is now 1/3 the size it used to be, and noticeably different from my other breast. I wouldn't be facing weeks of radiation, and I wouldn't have to make the decision on whether or not children will be a part of my future. (Tamoxifen might just tip me into permanent menopause).
I'm tired of being marginalized or treated like I have "cancer lite". Please be reminded that DCIS is still a serious diagnosis, and the path one takes after a DCIS diagnosis is not easy. Decisions need to be made, and we experience emotional and physcial changes daily.
end of letter.
Thanks everyone - I feel better now. I just read on a nationally well-known site how DCIS isn't cancer at all, and I just wanted to scream. My surgeon doesn't marginalize me, which I am thankful for, but holy cow, I've encountered this by many others and it is just infuriating.
Barbie
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hello barbie....i agree!
i was diagnosed with dcis in situ in july 2007.....since then....my "so called minimal cancer" had led to a mammatone biopsy, followed by 2 lumpectomies and finally a bilateral mastectomy (11-9-07)! so believe me when i tell you....it is cancer!
my was stage 0 and diagnosed early early....but there were tumors over 5 inches and each time they did surgery...the doctor kept tons of hope we could get it all!
the left breast was the concern...the doctor said after the 2nd lumpectomy that there really wasn't much skin left for them to take without affecting the muscles there! i took the bracna gene test because my grandmother and fathers cousin had had cancer previously...thank god it came back negative...
i opted for the bilateral mastectomy because i was afraid to have to go thru the whole thing again on the right side!
good thing i did...the doctor informed that after surgery they "rate your breasts" on a scale of 1-5 with 5 being the worst tumors...it turns out that the left that was affected was a "4"...imagine my suprise whrn they told me the right...(of which nothing showed up on my mammogram) was actually a 2...and had some clusters or precancerous cells!!!
i then knew that i had made the correct decision!!!!
ps)as for the sizes being different...i was told by my doctor that insurance will pay to make them approx. the same size?
just remember.....we're alive and we will be healthier as time goes on!!!!
you did have cancer even though they down played the dcis...i was very lucky my doctor said it "is very serious" and that left untreated i would have "full blown invasive cancer...within 2 years!!!!
hang in there! and remember
we are survivors!!!!!
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Barbie , I know how you feel. I had stage 1 invasive cancer 6 yrs ago. I was told, don't worry, it's nothing next to the real breast cancers. Of course it's not as serious, yet, because I was lucky enough to catch it early. I had a lumpectomy and 33 radiation treatments. I was told, you won't see this cancer again. Well , fast forward 6 years, I have cancer again. Same breast. Also very small, caught early, because of my insisting on a breast mri with my mammo. Well this time it was a mast for me, and I decided on a bilateral, since I didn't want to tempt fate again. First told it was "only dcis", but after path report, it was a small invasive cancer again, but thank goodness, really tiny, no lymph node spread. The oncology fellow, who saw me before my regular oncologist actually said to me, oh, you only had dcis. I actually had to correct him, and tell him, no, read the report, it was invasive also. He said, oh, it's so small, I called it dcis. He also minimalized it. If I hadn't been my own advocate, maybe it wouldn't be so small. I also had a woman tell me , when she heard I had cancer, oh, no chemo, it's not serious. I know some people don't know better, and I'm not trying to compare what I'm going through with those who have more advanced cancer, and I thank god every day , that I don't have more advanced cancer, but I don't really believe it ever leaves us. I'm cancer free now, but I know it will come back for me later. twice in 6 yrs, obvioulsy, my body is letting cancer through, but I can't live in fear, so I go on with my life, but the fear does creep in when I'm alone with my thoughts. I was told I don't need any futher treatment, no radiation obviously, I had it already, and no chemo, so I guess, all I can do is watch myself carefully. I advise anyone with any early stage breast cancer to be their own advocates, and demand whatever screenings you feel you need, so that more of us can hopefully be told our cancers aren't anything at all. Randi
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I also agree with the comments on this thread. I also had bilat done because of previous dx of pre-cancer ADH. I started attending the support group after my first dx in 2005 with my mom and the ladies accepted me even though I was not even fully dx with cancer. They have helped me tremendously through this year of coping with the effects of the surgery, even so much as showing me their scars prior to my bilat mast. I fortunatly am not taking chemo or rads but this is scarry enough to be cancer.
As a side note, if I had kept my breasts, my final biopsy showed additional adh in both sides, I would have been fighting it later on.
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Barbie-
Well said!! Even though the prognosis is excellent, it doesn't make dealing with diagnosis, treatment options, and surgical procedures any easier. The emotional toll is very much the same.
Cancer is cancer - and it all sucks!!
Mary
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I'm sorry to hear you have been diagnosed with DCIS. Yes, I can well imagine that you are going through much the same thought process as any of us dealing with a breast cancer diagnosis. I can also say for certain that many of us would rather have your diagnosis than our own... and this isn't intended to marginalize your situation. It's simply reality. Your two gashes? My bilateral mastectomy. Your menopause, me too. Your treatment... done? Mine approaching 12 months and I'm luckier than some. Your prognosis...excellent. Mine...well, not so good. So, yes, breast cancer sucks in all forms... some forms/stages suck worse than others though. Just my perspective and I don't mean to sound unsympathetic. Believe me, I wish none of us ever had to hear those words... it's malignant.
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Hello,
Yes it is no picnic DCIS, my mom had DCIS with a small 3mm IDC, so she went from Stage 0 to Stage 1. But even then they said only 5% chance of ever getting another reoccurance as she had no positive nodes. SHe had a complete mastectomy of left breast even though they said she wouldn't need it, then she went through Chemo even though she was told she didn't need it.
Today 3 years later, she has just been diagnosed with Stage IV metastatic breast cancer to the liver and bones. So who says it isn't serious. Some of these doctors are such a joke and there theories on what is "good" cancer and what is "bad" cancer is way off.
Good luck Ladies,
Michelle
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Twink,
Right, your cancer sounds suckier than mine, but I was still hoping to share MY reality here - which is why I posted in on the DCIS section of the site. I'm sorry to hear that your prognosis is not so good. My best to you.
Barbie
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Cancer is cancer, is CANCER. I'm sorry youv'e been made to feel this way, some people are idiots. Pearl
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I so understand how you feel, Barbie.
You have breast cancer. You heard those words. Your life changed and you have to deal with all of the aftermath.
You had the biopsies on your breasts. You had the surgeries on your breasts. You will be deciding on the radiation/tamoxofin issues. You will be hypervigilant forever, and watching over your shoulder, as we all do.
You hurt. You grieve. Damn, you have real cancer--wish you did not, wish none of us did, but you do and the mental distress of a cancer diagnosis is the same, no matter what kind or size of cancer.
Rant on!! Sometimes it does one's soul good to just rant and rant and rant . . .
And the next person who tells me I am not having "real" chemo, since CMF is "chemo lite" I think I will smack them in the face!!!
Okay, now my rant is over!
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Barbie,
I have been in your shoes,too.I have DCIS and was told all that precancer crap. But I also had 2 large excisions and like you have A MUCH SMALLER LEFT BREAST.To tell the truth, I love my little breast because of how brave it had to be!! But that took some time.
Thanks for bringing up a hard subject.
Basha -
According to my surgeon- it's "just a little bump in the road"- so why did the nurses quietly get me a breast cancer book wrapped in brown paper-
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Barbie - agree, agree, agree. If this isn't cancer, why the hell did I have surgery and rads? To dismiss anyone's illness as not bad enough is enough to make me scream.
We DCIS people have to deal with the 'just' all the time. "Just" lumpectomy. "Just" rads. We keep our hair. Without an invasive component, there is no chemo. There are few outward signs. We have cancer. No one can say otherwise. We all have our crosses to bear on the cancer journey. Yeah, many have it worse, but we all have cancer.
Keep on ranting. I'm right behind you.
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Hello Ladies, may I rant and rave too??? I too had DCIS along with grade 2-3 on left. The only sign was an inversion of the tip of my left nipple. Within 3 weeks time a had 3 stero-by's, 2 ultrasound bio's, and 2 MRI bio's. Then the wonderful bilaterial mast. along with the expander's that now have to be filled every other week. Let's not forget the hotflashes because our bodies are so out of wack from all the tests and surgery. The missed work or family events because we too are just too tired from the physical therapy (3 times a week)! So yes, I do have cancer but am very, very, thankful that I told the doctor that something was wrong. She told me that I just turned 40 and our bodies change and sometimes so do our nipples. Not to worry, she couldn't feel any lumps or bumps. Well now I guess I can change my nippleless chest when the expanders are complete to tatooed stars if I so choose. .......My insight on the future is how I was lucky if I filled an A cup so BC/BS can pay for the B's. Good Luck to all.
Sharon
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Barbei - I understand what you are saying. I have had 3 surgeons all tell me that DCIS is not life threatening. After the 3rd one said that, I asked "then why do I have to do anything about it?" I was being facetious, I already knew that wouldn't be smart - but my point was that while it is good to be reassured, the comment should be followed with, "but it will likely become life-threatening if you don't treat it aggressively enough".
Pam, I am also in Seattle.
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Hi Libby
Where did you find 3 surgeons like that? I'd have said the same thing, and I probably would have had 3 fewer surgeons to choose from
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Hi Libby
Where did you find 3 surgeons like that? I'd have said the same thing, and I probably would have had 3 fewer surgeons to choose from
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Barbie,
I just wanted to comment on your thoughts too. I use to think a little like some of the other people, that stage 0 was a "good" cancer. Mine is stage 1 and two years of still going thru crap. But then my good friend was dx with DCIS and she went thru so much crap of her own. Not as long as me, but still, it was just as much mentally. Then the other day I was having coffee with a friend, we were just sounding off, her sisters BC came back as mets to the spine and lung. I asked her what her sister was staged at 5 years ago, since, you know, we always want to hear that someone was at stage 3 or higher when they had mets right? It makes us feel better about our own mortality. Well, she told me she had DCIS. A real eye opener for me. I was so surprised! So, I do understand (now) what you mean. Sorry for any of those with DCIS I may not have understood in the past. You are in the same boat as us. Lets just keep rowing and get out of here!! :-)
g
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I second everything said above. I heard the exact same "bump in the road" comment from my internist when I went to him to be cleared for surgery. At the time I thought he was right, but as the next couple of months unfolded, with more scans, procedures, 1st and 2nd opinions, etc., etc.--not to mention surgery and radiation--I realized it was a pretty damn big bump.
I was in a little bit of denial right after my diagnosis because of the small size of my tumor and the fact that it was only stage one, but the whole surgery/treatment experience, plus the fact that there always seems to be an appointment or procedure in the near future, keeps any cancer diagnosis front and center. Also, taking that tamoxifen pill every morning...
In my opinion, there is no such thing as "good" cancer, no matter what the stage, treatment, etc. We're all in this together...thank God for this board. Good luck to everybody--stay strong! Good rant, Barbie--you obviously touched a nerve with lots of us.
Lynn
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I was just wondering how in the world "good" and "cancer" could ever be used in the same sentence. I mean isn't that kind of an oxymoron? When the hell as cancer of any type ever been good. It amazes me how people try to trivialize something so devastating in order to make themselves feel better. Somehow I think if they were given the news they had cancer they wouldn't feel it was so good no matter what type of caner it was. Cancer no matter how you spin it. The impact it has on your life as well as the lives of your family and friends is still the same. Just the word cancer is devastating. We are all on this journey together no matter how big or small the cancer is and I pray we will all see each other when the journey is done. Stay strong sisters and know that we are all in this together! They can't take our spirit unless we allow them to.
Keep laughing,
Jenny
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Barbie, i am in complete agreement with you and the others here. I also had DCIS and have lost my whole breast because of it, after a year of surgeries. DCIS is CARCINOMA -- cancer, just not yet invasive cancer. It bothers me greatly when i hear medical professionals minimize DCIS. I have also read posts here on the bco boards from regular posters that have also minimized DCIS and even joked about the name "Stage 0". Whatever form or stage this disease takes in our bodies, it still is a complete disruption of our lives, and brings with it a whole set of treatments and fears. This disease is hard on our relationships, our children, our goals, our jobs, our dreams, etc. I certainly don't see anything funny or insignificant about DCIS or any form of cancer.
celia
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I feel the need to disagree here.
Having DCIS is not a trivial thing.
However, if I'm at the Oncologist's and he's got somebody whose lung is filling up with fluid, or whose head is pounding from mets, or who is using a walker because their legs don't move right anymore -- and me to see. They can go first!
It is no fun having a lumpectomy/radiation or a mastectomy. Tamoxfien is not a wonderful thing either. But I'd would take them all over full-blown metastatic cancer.
I don't like being marginalized and I refuse to get into it with people who tell me that DCIS isn't really cancer, but I'm also really happy that I am not on the frequent visitor list at the Oncologist's. Let's not forget that it could be a lot worse.
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Amen Barbie7!
I was also told, "it's not cancer" by my GYN doctor after my stereotactic biopsy...
How ironic then was it that my next appointment was at a "Cancer Center"... I was so confused.
I eventually chose a bilateral mastectomy with reconstruction (expanders) and later was referred to Physical Therapy...
You know what it said for 'diagnosis' on my PT referral slip? "Breast Cancer"...
It doesn't really matter what anyone else calls it to me anymore--as I walk into the Cancer Center each week for PT I am grateful that it wasn't invasive (as far as we can tell with today's technology) but I am sure, in my mind/heart that what I had surgery for was cancer. Stage 0, Grade 3, cancer.
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Good morning all. I'm feeling SO much better today after a good night's rest (and a little rant).
I thank the Lord every day that I don't have advanced cancer. I'm just asking for a little respect when I'm one-on-one with a health care professional or when I'm reading information on a web site.
I also have a very positive outlook, although my rant did not necessarily reflect that - It was a bad day.
Thanks everyone. Barbie
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Barbie, We are all allowed to rant once in a while. Breast Cancer - no matter what type - is a life changing experience, how each person deals with it is different. There is a lady in my office who had bc 14 yrs ago and will not talk about it much, she had lump with rads and I am not sure about the chemo. Since my dx she has asked me occasionally how I am doing. She will not go to the Relay for Life, Komen walk, Cancer survivor activities in the community. I don't know if it is because of the length of time that keeps her from going, but at the Christmas dinner last week for all cancer survivors in the county there was a woman who was 47 yrs survivor of cancer. Cancer is Cancer and we are all survivors.
Sheila
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Barbie,
Cancer in ANY form is a completely life altering experience that I wouldn't wish on my worst enemy. People who haven't been diagnosed just can't "get" it. Go visit the "worst thing someone said to you" thread and you will see how completely moronic some people can be. I was stage IV right out of the gate at age 38. I still have my hair, so plenty of people don't understand how "sick" I really am. I have been yelled at by a parking attendant at a cancer center when parking in a slot designated for cancer patients. She ran over to my car after I parked and started screaming that "these spaces are for cancer patients!". Well, pardon me if I forgot to wear my "I have metastatic breast cancer and all I got was this stupid shirt" t-shirt! AGHHHHHHH! Even some friends and acquaintances don't "get" that I am still living with cancer daily and things could take a very bad turn at any time.
The one thing that seems over the top and such an insult is when someone who DOES "get it" because they have been diagnosed or close to someone with cancer treats someone with a different (notice I did NOT say "better" or "lesser") diagnosis like they don't "deserve" the same kind of support. It is unbelievably ridiculous to me that there are such prejudices within the cancer subgroup. I suspect that there are those who might be hostile about YOUR diagnosis because theirs doesn't carry the same positive statistics. The fact is, none of us is a statistic and each of us deserves respect and compassion.
It just sickens me that doctors and medical professionals are making you feel dismissed as well. They should know better than anyone the "what ifs" involved with ANY cancer diagnosis. Giving them the benefit of the doubt, perhaps they are trying to reassure you. If their efforts to reassure you end up making you feel badly then they obviously need to work on their communication skills.
Sometimes I think it is better for me that I was stage IV from the beginning. I am certain that the unknowns, the possibilities, the "what ifs" would have been too much for me to get over no matter how many statistics I was shown or how many "reassuring" words were said. I know me and I probably would have ended up making myself sick in other ways. I certainly feel for you all who deal with the fears of recurrence or developing stage IV disease. I am sure it is hard to rein in those thoughts and fears and "move on" like so many urge you to do.
Barbie, I AM glad that you have a form of bc that most would consider cureable. I am so sorry that you are hurting because of thoughtless and inconsiderate people.
(((HUGS)))
Diane -
Hi. I'm certainly not going to defend the docs, nor am I going to minimize DCIS. It has responsible for alot of anxiety in my life. I was also told it was not really a cancer, but a pre-cursor. I was told that because there have been quite a bit of studies going on that says most of DCIS ( 50-70%) probably does not turn into invasive. The types that generally do are high grade , necrotic, comedic, etc. However, they can potentially be cured with proper treatment. Obviously, some come back. Why? Who knows. Surgical error? Narrow margins? Meant to be? We all worry about that. I hear "just DCIS" frequently. It frustrating, but there is so much bad BC out there, esp with younger women, that Oncs feel that anything that is pretty much curable, isn't as bad. The 5 year survival is 100% when treated. I'll take that.
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ok - here's my rant for the day!
Why when after my mast for dcis (lucky for me, since they found 8mm invasive) did my breast surgeon look me straight in the eye and told me straight out "no chemo". My husband and I were elated that I wouldn't have to subject my body to the chemicals that those needing chemo do. Next thing I know my onc is having me take the oncotypedx test to determine whether or not I needed chemo! My score was low, so my onc advised against chemo, but I am now on tamoxifen. All this because I was dx'd originally with dcis - Breast surgeon gave no opinion that invasive was a possiblity - that it was "only" dcis. She explained that yes it was pre-invasive but did not tell me that there was a possiblity of invasive in the tissue. Boy was dh pissed!!! Let the bs do the surgery and let the oncs take care of the treatment!!
Sorry for the ramble.
Take care.
Trish
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I really think in my case, the surgeons wanted to prevent me from panicking initially. I had a nurse practitioner say the same thing about it not being life threatening and then ask to be sure I had processed that information. None of them suggested anything less then aggressive treatment but I think they are all so certain that once we as patients hear "cancer", we think we'll die, so to them the important thing is to get us to hear that DCIS is highly curable. It just comes across unbalanced if you've done your homework.
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I agree with Libby. Sometimes people aren't minimizing, they are trying to get important information across.
My internist gave me the biopsy results. She told me "it's cancer", blabbered about staging and chemo, and left the room in tears. I had to get a copy of the report from the med tech to verify that it was the DCIS the radiologist had told me to expect.
So some health care professional minimize this - awful. And others are clueless in the opposite direction!
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