Should I feel lucky?
After the holidays I learned 2 sisters of a friend are battling stage 2 & 4 BC and a former teacher of mine died from BC. I realize I was much more fortunate to have DCIS (approaching 2 years now) but why should I feel lucky to have had cancer (even if its the "good kind"). I realize everything is relative to something to something else but I don't feel lucky to have had cancer.
Comments
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I don't think you should feel 'lucky' or 'unlucky.' What they have is extremely serious and what you have had is somewhat less serious. But I think 'the good kind' is sort of understating it and denies the seriousness of what happened to you and the impact on you. I was in a couples coping with cancer group while going through treatment. 2 of the 4 couples had DCIS and it didn't seem like 'the good kind' to me. They struggled with the whole thing just like we did.
I think you should accept your feelings and not compare yourself. This is ALL hard even if there are degrees of hard-ness to it.
Hope this helps. Don't beat yourself up.
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Hi, Mary ~ I'm not sure "lucky" is the word I'd personally choose for having any form of bc or dodging a more advanced diagnosis, but I do think it helps put things into perspective to realize that everyone has issues and challenges (no matter how perfect their lives may look from the outside), and that no matter how bad our problems are, they could always be worse. So maybe gratitude that your situation wasn't worse??? Deanna
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I feel lucky. Although I had a mastectomy I missed systemic chemo treatment as well as that heart-dropping thud that my life was in danger.
It helps me appreciate my blessings to count them.
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As you certainly wouldn't want to have their diagnoses, then yes, to feel lucky/grateful that you are not having to face their challenges and treatments, would be good. You've had a frighetening experience-but should hopefully be able to carry on with the rest of your life with few problems. Neither of your friend's sisters has this option-particularly the girl with stage 1V who will need treatment for the rest of her life, until she dies.
I'm not trying to dismiss your illness-but it is the least threatening kind to have. Please don't try to compare your situations, as really, they're not comparable. Instead, move on with your life, and try and put this behind you. As roseg says-count your blessings-I do, even at stage 1V!
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Are you lucky to have been diagnosed with DCIS? No, of course not. I wouldn't wish a diagnosis of breast cancer - of any stage - on anyone.
But, given the bad news that you were diagnosed with BC, are you lucky that your breast cancer was found at the earliest possible stage, at a point at which it is highly (virtually 100%) survivable? I think so. In my case, I had a microinvasion along with my DCIS (which puts me at early Stage I), but still I was very relieved when my doctor talked to me about my prognosis - I recall that at that moment I felt very fortunate (for some reason, I prefer "fortunate" to "lucky" although they mean the same thing). Additionally, as Rose said, those of us with DCIS and early stage BC are able to forgo chemo and personally I'm very grateful for that.
All this doesn't take away from the fact that a BC diagnosis - of any stage - wreaks havoc on our lives and our emotions. Even for someone with DCIS, that should never be dismissed or downplayed. Every one of us is affected differently, and someone diagnosed with DCIS might be more impacted emotionally that someone with a later stage diagnosis (although not likely Stage IV, I would think). However, to expand on the point that Elaine made, with DCIS this turmoil will hopefully only exist in your life for a period of time but someone who is Stage IV will be affected every day for the rest of her life. For those of us diagnosed with DCIS or early stage BC, that too is something to be grateful for.
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Mary,
I think you feel however you feel..... while it is always unwise to make comparisons, the truth is, we all do it all the time on all sorts of issues. That said, I am sorry to hear about your teacher and your friends who are struggling.
I have to tell you, I feel very lucky--not in comparison to anyone else, just lucky. My lump was found early, I had access to the best health care, I had an excellent prognosis, the best treatment--- not a day goes by without me thinking "boy, I was indeed fortunate".... I don't feel badly about feeling it-- I feel like we all have things we have to deal with in life, and if this is my "thing" then it has gone as well as it could possibly go, and I feel very fortunate.
None of us know what is going to happen to us--- and I think this experience, at least for me, has made me understand in a very real way that we don't control much. In many ways, that has been very freeing..... and I feel very, very fortunate. I agree that for the early stages, it is easier for it to fade into the background.....
I think I am fortunate every single day....
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I think it is telling that I have not cried for myself at any time so far. I have cried when I have read the stories of some others here.
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I don't feel lucky--I feel blessed with a loving husband, good doctors, newer treatments that have made my journey easier. I wish DCIS hadn't happened to me, but it could be so much worse. Not having to have chemo is one huge advantage of having a bc that's caught before it's out of the duct.
That said, I do have the physical negatives that go with surgery/treatment and the head-game can beat me up once in a while. I try not to dwell on that and get on with the good things in my life. It takes a while to get to that good place --and then to find friends whose lives are messed up with dx and treatment right now could give pause to anyone. I'd focus my thoughts on helping them if you're in a position to do so.
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I also didn't feel lucky. All of us with DCIS went through, and still have all of the same emotions and feelings that the other stages are going through.
No matter what our stage or outcome is, it's just a different journey that all of us BC'ers are going through.
It totally sucks that all of us are on this journey, but I've met a wonderful group of people and new friends by having BC.
Janet
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No one who gets breast cancer at any stage is lucky. I think that it does make you appretiate your life and the small blessings around us every day. We get the reminder and I am glad for that, but no we are not lucky.
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Perhaps the better attitude is to appreciate my many blessings and being cancer-free for nearly 2 years rather than feeling lucky. No one should ever have to go down this road in any way, shape, or form .
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I feel extremely lucky. As others said, it's a matter of perspective. I had three different doctors tell me (before biopsy) that they were sure my cancer was invasive. Was I relieved to hear "it's cancer, but it's all in situ"? HECK YEAH -- I was doing Snoopy dances all day long when I heard that. (Of course, if those three doctors hadn't told me that beforehand, I'd probably be sobbing my eyes out upon hearing those exact same words!)
I also feel blessed that this was a huge wake-up call for me. I had been in a chronic depression over a personal tragedy and was headed down a very bleak and dismal road. I was killing myself slowly with the choices I was making. This was a much-needed wake-up call and I'm now NO LONGER depressed and am loving life once again. Ironic that it took a cancer diagnosis for that to happen.
In any case, I can understand the point of view that no one is "lucky" to have any form of cancer, I feel with all my heart that we are all very, very lucky/blessed here if DCIS is the worst thing we ever experience.
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I don't feel lucky, but as I've said elsewhere it's because of the landscape of other miseries that represented 2009.
Some doctors are proposing the terminology for DCIS be changed to remove the word "carcinoma," which tends to heighten everyone's terror about this condition. If they changed the word to something less frightening and correspondingly were able to change the attitude, I might feel better. As I've mentioned before, I went through a scary colonoscopy and ultimately went to a colorectal surgeon. (I had a carcinoma in situ.)
Surgeon looked at me very steadily and said, "You do NOT have cancer." Then he talked about how it wasn't invasive and pretty much everything that can also be said about DCIS, and I felt a lot better about everything.Since I'm about to go to an oncologist and a radiation oncologist (as well as the surgeon) it's a little hard to expect the same attitude, but... well.... it certainly made me feel better (and maybe even a bit lucky).
I think it's definitely perspective but the terminology helps lead you down certain paths, too.
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Several Dr.'s I've seen have also given me the "it's NOT cancer" speech. While I am exremely happy and relieved that, at least so far as we know right now, it IS "only" DCIS and I don't have to worry about chemo or mets, since I'm looking at surgery (and depending on which surgery, rads and/or tamoxifen) and all the associated risks and SEs of what are CANCER treatments, I really don't see the diff. I think of DCIS as "Cancer Lite." To me, it is DEFINITELY cancer, just not as far advanced.
The other reality is that none of us with DCIS knows until after the final path report that it IS (or WAS) all DCIS, no invasive component. 90% of us will get that great news, but 10% of us will draw the short straw. And then we may feel like we were lied to.
The whole "change the name" issue really pisses me off. Instead of using brainpower to find better treatments, it's being used to argue about changing the title. I think it's a huge waste of time, money and talent.
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Sweaty, I think the name is significant. Right now, they call it early cancer or stage 0 (more cancer terminology), and they treat it like cancer. If they stop calling it cancer I think they'll have to start questioning it why they're treating it like cancer when they're saying it isn't. I believe (though I admit I am something of an optimist) that this disconnect will push them toward better management and understanding. At least that's my operative delusion.
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I agree with kitchenwitch on this (looooove the name, by the way!). The word itself strikes terror into so many people-and rightly so. Take the name away, call it something more accurate-and just watch the stress levels reduce in those who are diagnosed with it. It is only a name-and in this instance, it's not even a very accurate name. Surely better to call it something which reflects it's overall unthreatening nature-and allow these women to deal with their illness, and move on with their lives. Instead of this we see instances of women imagining themselves at stage 1V before they even have any treatment. Drama queens? Perhaps some are -but surely most have been paralysed by the word that everyone still dreads hearing?
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Though I agree with much that is said here I wonder (now outloud) if the name is changed although the stress levels will surely go down how many of us will next be dx'ed with invasive cancer BECAUSE the DCIS was not looked at as serious. I do not feel "lucky" - this is just life and it comes at all of us in different ways.. I do know that I don't ever want to be dx'd with Stage IV so I will do everything I can now to prevent that! Lucky, unlucky we all have a life that has a date stamp on it - today I am blessed to be cancer free and living life... but that is after the multitude of tests, consultations, surgeries etc. etc.. I do wish I had my own breasts, but I will have to come to terms with that loss as a part of my life, part of my path, if that makes sense, to the ultimate "date stamp".. Best to all - Deirdre
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Elaine: I think the name also causes doctors to overreact. I had a carcinoma in situ on my colon last summer. It was removed; there was some doubt it was all removed. I went to a second GI and he hit the ceiling even before he looked at my colon (2nd colonoscopy, alas). "You have to have a resection! It could be come invasive!" My surgeon had such a better attitude (sorry, I detailed all this above). But I think the whole vocabulary of cancer caused my second GI to actually steer me toward surgery (which turned out to be unnecessary - at least for now, knock wood) - whereas the surgeon would have been satisfied with a third colonoscopy.
I think the high rate of mastectomies in the U.S. for DCIS is due in part to doctor over-reaction. (I also want to say that I know some people have small breasts and extensive lesions, so sometimes I'm sure it is the right thing to do - and I don't want to appear to be judging anyone's decision.)
Some doctor who is examining DCIS closely said it's more of a spectrum than one specific disease.
My latest thinking for myself is that mine is slightly more aggressive than I'm comfortable with. Perhaps in a few years it would become VERY aggressive. (The signs are there with some comedo necrosis.) So I'll treat it surgically. Hope for clear margins and a "benign" on my biopsy that's being done at same time. Then i'll have radiation. And maybe that will be that. (Knocking on wood again.) I can't say I feel lucky, though.
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Here's the reason I get angy when I read about the potential name change for DCIS. It's true that some cases of DCIS are low risk, a pre-cancer that might never turn cancerous. But the problem is that other cases of DCIS are high risk and likely to become invasive cancer within a short period of time. Until medical science figures out which is which, I believe it's irresponsible to change the name of DCIS to remove the word "carcinoma" and to treat DCIS purely as a pre-cancer.
I've spent over 4 years on this board. I have seen many women come here who are frightened beyond belief that they have been diagnosed with "breast cancer", DCIS. I have seen many women react quickly by having a bilateral mastectomy, without understanding their risk level or the long-term implications of DCIS. I am not saying that I think a bilateral mastectomy is inappropriate for all women diagnosed with DCIS; future risk can vary significantly by individual and some women who've chosen to have bilaterals have a very high future risk. I certainly don't think that those women "overtreated" their DCIS, but I do feel sad for those who have a low future risk (and usually don't understand this) who opt for a bilateral simply out of fear.
But, as much as I hate seeing women over-react to a diagnosis of DCIS, I worry much more when I see women who under-react to a diagnosis of DCIS. Yes, there are some women who have small low grade DCIS who choose to do nothing or who have surgery only. I'm not talking about those cases - in those cases, the choice of treatment is probably quite appropriate. What worries me is when I see women who have large amounts of DCIS or high grade DCIS or DCIS with comedonecrosis who consciously decide to undertreat their condition specifically because they've been told that it is a "pre-cancer". To me, those more aggressive types of DCIS are not pre-cancer; they are pre-invasive cancer. And pre-invasive cancer can become invasive cancer very quickly. The good news is that if all the cancer cells are removed from the breast and/or killed off while they are still in the pre-invasive state, there is no risk of mortality. But if the cancer is not adequately treated and some of the cells remain in the breast and evolve to become invasive, then the whole game changes. That's the type of situation that doctors should be trying to avoid. To me, if all DCIS were to be called a pre-cancer, we would end up with many more women who undertreat their DCIS and who end up with a recurrence in the form of invasive cancer (40% - 50% of all DCIS recurrences are invasive).
Here's an analogy I've come up with for DCIS: I think of DCIS as being like a caged wild cat (a tiger, jaguar, leopard, etc.) in a populated urban setting. In the cage, these wild cats are harmless. But if these cats gets out of their cage, they can cause terrible damage and they can even kill. The objective is to do everything possible to ensure that these wild cats stay in their cages. And if it is a particularly aggressive cat and/or there are too many of them caged together and/or if the security of the cage is suspect, then the safest course of action is to get rid of the animals. A caged wild cat is still a wild cat - it may not be dangerous today while it sits in it's cage, but if it gets out, it will be just as dangerous as any other other uncaged wild cat. Of course, there are different breeds of wild cats (36 in all, in fact) and some can be trained and are by nature more docile, while others can't be trained and will always be aggressive. So is it okay to keep some in their cages, because they are of little risk to escape? Probably. But not so others. What's important is to be able to identify which wild cats present little risk and which wild cats present a lot of risk. And if you can't, it's sure a lot safer to treat all wild cats as though they present a high risk.
A silly analogy, but maybe it makes the point? Once we have the science to identify, with a high degree of certainty, which cases of DCIS are truly low risk, then there is no reason to not consider those to be a pre-cancer. I also see no reason why the name of those types of DCIS couldn't be changed to remove the word "carcinoma". And once we are able to identify those low risk types of DCIS, we will also be able to identify those types of DCIS that are high risk. These should remain DCIS because these types of DCIS are cancer that just happens to have been found while it was still in the pre-invasive state.
Deirdre, great to see you!
Edited for typos only.
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Great to see you to Beesie! And I thought your analogy was great - well done and clear!
Best
Deirdre
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Speaking of: http://latimesblogs.latimes.com/booster_shots/2010/01/breast-cancer-dcis.html
One of the many things in that article that irks me - Dr. Carmen J. Allegra of the University of Florida is male, not female.
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sweatyspice, thanks for posting that link.
What interests and concerns me most in that article are the following statements:
- "...most of the time DCIS is a low-grade tumor that is best described as something between normal breast tissue and breast cancer." This suggests that most DCIS is grade 1; where is the support for this statement? Certainly it's not what we see on this board. I have tried many times to find out what percent of DCIS that is diagnosed is grade 1, grade 2 and grade 3 and I have had great difficulty finding this information. I have found one study that reports on this, but it is from 2001, not as current as I'd like. Still, the conclusion from this study is exactly the opposite of what's being said in this article: "Of the screen detected lesions 28 (13%) were low grade, 40 (18%) intermediate grade, and 153 (69%) high grade. Of screen detected lesions 186 (87%) were necrotic and 29 (13%) were not. Of the 151 symptomatic lesions 24 (16%) were low grade, 34 (23%) intermediate grade, and 89 (61%) high grade. Of symptomatic lesions 112 (75%) were necrotic and 36 (24%) were not necrotic.... CONCLUSIONS - As most DCIS detected at screening is high grade and necrotic, aggressive investigation of suspicious microcalcification at mammographic screening is advocated. " http://jms.rsmjournals.com/cgi/reprint/8/3/149.pdf
- "It is entirely clear that much DCIS either would not develop into invasive disease or would do so much later in life, perhaps never becoming clinically relevant." What total crap! It is entirely clear that this is not the case. This statement is true only as it relates to low grade DCIS. Read any study or the report of any legitimate breast cancer expert and they all explain that the studies showing low levels of progression from DCIS to invasive cancer are based on an analysis of low grade DCIS only. They also all say that when it comes to high grade DCIS, the risk of progression to invasiveness is unknown but is certain to be much higher. I have analysed a lot of the data on this and posted it here before. When I finish writing this, I will find that post and bump it up.
- "The relationship between DCIS and invasive breast cancer remains unclear..." This is misleading and only partially correct. What is known is that the vast majority of IDC starts as DCIS. From the American Cancer Society: "Invasive (or infiltrating) ductal carcinoma (IDC) starts in a milk passage (duct) of the breast, breaks through the wall of the duct, and grows into the fatty tissue of the breast." Hmmm.... sounds like it starts as DCIS, right? So doesn't that mean that DCIS is in fact a pre-invasive cancer, not a pre-cancer?
As for changing the name of DCIS in order "to remove the anxiety-producing term "carcinoma" from the description of DCIS", doesn't that seem just a little condescending? These poor women diagnosed with DCIS worry too much, so let's not tell them that what they have is cancer. Maybe another option would be to better educate patients and doctors so that women diagnosed with DCIS better understand their diagnosis and therefore don't worry so much. No, why do that when a simple name change can solve the problem (and create new problems like under-treatment of a potentially serious condition). I find it interesting that other types of cancers that have in-situ stages don't seem to face this same debate. Bladder cancer, skin cancer, thryoid cancer, cervical cancer and cancer of the larynx are all examples of where there are in-situ cancers and there's no debate (as far as I know) about these in-situ cancers not being cancer. Is the problem with DCIS simply that it's being diagnosed too frequently and that's why some in the medical community would prefer that it not be considered a cancer? You have to wonder....
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Ah, Beesie - thanks for doing the work. I had the same thoughts but was too lazy. Please consider cut and posting your post above to the "comments" section under the LA times article.
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Like you said, Lucky may not be the right word, but perhaps blessed that you found it early so it didn't spread. Sorry about all of your frustrations. Perhaps some day it will be a clearer picture for you?
In the last month I've been seeing a therapist and I've been feeling guilty that the 'only' treatment I've needed is a mastectomy. The therapist said in a sense I have survivors guilt. She explained I need to realize that we all went through the same processes of diagnosis and tests. Yes, I was blessed to have found it early, but I have the right to 'morn' my loss too.
When I went to my breast specialist, she explained that the biopsy revealed cancer cells and they were high grade and very active and multiplying rapidly. In my case, I had to go with a mastectomy anyway, because from the mammo my calcifications were over 10cm. But I figure the BS NEVER would have suggested a mastectomy if it wasn't necessary. I truly believe Drs want their patients to be well, and present to us with the most current research and treatments they are capable of. Always go with someone you trust.
Maybe in 5 years, research may say any kind of treatment was unnecessary for DCIS, but for now, I believe I made the right decision with all that has been presented to me.
-Catherine -
I have to say that if the name is changed, 'cancer', taken out I would be so pissed and depressed. I have to have a mast....why would I every consider letting my Dr take my breast for something other than cancer? I wouldn't...ever. My bs looked me in the eyes and said 'it's cancer. it's not invasive, yet'. If she said it wasn't cancer I would have thought she was crazy for suggesting any surgery. I don't know that I would have agreed to even a lumpectomy. Are we 'lucky' because we found it before it became invasive? Well, or course I feel fortunate (I don't like the word lucky)! The fact remains that the treatment for DCIS is the same as many stage I girls. I think I heard that DCIS women lose their breasts more than some stage I and II ladies. What's up with that? If it's not cancer why the lumpectomy, rads, oncologists, mastectomies, Tamoxifen, etc....? This topic just really upsets me..sorry if you can tell! I feel so fortunate that my bs has never minimized my diagnosis. She did make me feel fortunate that my cancer was found at the stage it was but never that it wasn't cancer or serious. I love her!
Just another thought. To me, saying DCIS isn't 'really cancer' is like telling someone who is 6 wks pregnant "oh, your only a little pregnant". Either you are or you aren't! I find it patronizing to speak to us that way. Ok, off my soapbox!
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mom3band1g
"Just another thought. To me, saying DCIS isn't 'really cancer' is like telling someone who is 6 wks pregnant "oh, your only a little pregnant". Either you are or you aren't!"
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I really like this analogy. It kinda made me laugh, but but then a little sad.
-catherine -
I mentioned this to my teenage daughter. Her response was, "Looks like a duck, walks like a duck, as far as I'm concerned, it's a duck." So, we may have DCIS which has not spread, but it's treated exactly like the other forms of cancer. I agree that I have felt guilty grieving DCIS as cancer, since it's not as far-ranging as other's cancer. But, I gotta say, I had a bilateral mastectomy for good reasons, and that definitely requires some grieving, no matter what. It was a decision based on soul searching and it gave me peace, but it's still a loss. I agree that comparison is lethal. A loss is a loss, and a shock is a shock, and each thing must be grieved and processed well so we can move forward. I'm preaching to myself here.
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I had the same reaction as you, It is like telling you you are pregnant but then you are not??? It is very confusing. I now have found out that my margins have been found to be positive for cancer. Meaning that through my bi lat mast they did not get all of the cancer out. The good thing is they think they can remove it when they replace my implants. The confusion sets in when they tell you you have DCIS and is not considered cancer, but yet I will have to suffer the consequences as a "cancer" patient. I am more than likely going to have to take tamoxifin since I am her2 positive. So it is crazy.
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