Feeling "fooled"...

Yes, it is frustrating.  I am a very analytical person and find it hard to deal with the "grey areas"... and my entire breast cancer experience has been very "grey".  There have been no clear-cut answers for me.  For example, I was diagnosed early-stage, but nobody could agree on whether I was a late Stage 1 or an early Stage 2.  I had only one cancerous lymph node, but there was a lot of discussion on whether I needed more aggressive treatment or not because it was only one node.  Even my radiation treatment simulation ended in a huge, technical discussion on whether- or not I needed Regional Node Radiation because I only had Sentinal Node involvement.

Everyone seems to be afraid/concerned about being over-treated or avoiding the more unpleasant aspects of treatment if they don't need it.  To me, it was a no-brainer.  I had cancer - however small; however early - and I wanted to go after it as aggressively as they would let me.  Thankfully, my oncologist agreed, that NOW was the time to blast away at it; when we had a chance to stop it in it's tracks.

Cancer is cancer.  It's not cureable.  But if I have a chance to root out every last vestige of it?  You're damned straight I'm going to do the works.... and have no regrets doing it.

Yes. My first was 1 cm grade 1, stage 1, no LVI, no nodes, hormone +, her2 neg. I was concerned about it's position inner upper quadrant and internal mammary nodes. No real response to that. I asked about removal of 2nd breast. Nope. Rare to get it there. Second cancer in THAT breast was .8mm, grade 3, no LVI, hormone+, no nodes, stage 1........I asked about oncotype three times....nope, didn't need it as treatment was going to be the same...no chemo, no rads (because I decided mastectomy for both), just tamoxifen. Now I wish I had insisted on oncotype given the grade 3. Asked about taking out ovaries. Nope. That's rare. Now of course, I think, weren't right about the second breast, maybe not right about the ovaries because TWO separate breast cancers could mean a gene involved. NOT offered that test either. I could pay, too. When you are sitting there scared to death, making yourself insist on anything becomes harder to do because you are just trying to breathe and get through the ordeal. Maybe there should be patient advocates on hand. Anyway, we do the best we can and hope for the best.

I was given the diagnosis by a nurse navigator.  She was all smiles that I was Stage 1 and ER+.  She said that was the easiest to treat.  There was nothing about being a patient for the rest of my life, or being at risk for the rest of my life.  Now when I go my primary care dr.  all I hear is "With your history...".

One of the grandmothers in the family had a mastectomy in the 1970's.  She lived for 30 more years with no other treatments.  I guess it is the luck of the draw.

I read this recently and felt it really applied to me in my BC journey. It is an except from Granger Westberg’s little book titled, Good Grief.

Westberg relates from his experience that the various forms of loss we encounter in our lives need not be entirely damaging; they can, to some degree at least, be life-enhancing. Some of those "life-enhancing" results Westberg expects can happen:

• We come out of our grief experience at a slightly higher level of maturity than before.

• We come out of our grief as deeper persons because we have been down in the depths of despair and know what it is like.

• We come out of it stronger, for we have had to learn how to use our spiritual muscles to climb the rugged mountain trails.

• We come out of it better able to help others. We have walked through the valley of the shadow of grief. We can understand.

My surgeon told me I had an 85 percent probability of the cancer NOT coming back within 5 years. He then added: "You probably won't die FROM cancer, but you will die WITH it."

I appreciated his honesty.

Harmony - You are more than welcome. It is going to take awhile for you to accept the dx. I struggled intensely emotionally for five months. One of the best things I was told was by a Dr I went to see when we were on vacation - I went to see him about a self-diagnosed and imaginary thyroid issue, he saw through it right away. Turns out his wife had the exact type and size of tumor I had. He said it was going to take me a year or even two years to accept the diagnosis. Honestly I was shocked - I couldn't imagine it taking that long. I'd always bounced back or plowed through every struggle in my life.  He was right.

Be easy on yourself. Yes - you are forever changed. But perhaps an even richer and more meaningful life awaits you.  Hugs to you!

I agree that it can be somewhat of a disservice when a Dr. tries to put a positive spin on a cancer diagnosis. And yes, the acceptance process is long. There is something about hearing cancer with your name attached to it that forever changes things regardless of your stage or prognosis.

I struggled with "survivors guilt" when I got my diagnosis and yet have felt a little miffed when my onc puts that positive spin on it, almost as if it was a case of a "not too bad flu".

Of course it's better to be a stage 1 or 2 and have a low oncotype DX score. That's a no brainer. This does not mean that once treatment is over the outlook is FOREVER sunny.

That also doesn't mean that I don't have a positive outlook

Fascinating thread! I learned a lot. I noticed pretty much all of you (except Beesie who did have a micromet) have Stage 1 or higher. I always get the "you have the "good kind" of cancer" comment with my DCIS. Even my surgeon said it. Yet here I am, a huge chunk of my boob missing after two surgeries, just now shaking off the serious exhaustion from my dose dense protocol of rads and suffering serious joint pain and other side effects from the AI and all I can say is "If this is the good kind of cancer, thank God I have this one" cause knowing it gets a lot worse than this terrifies me.

That being said, my understanding is that if DCIS patients have a recurrence, about 50% of the time it is invasive IDC so I am still not feeling very confident even though they tell me I have the only kind of BC that can be "cured."

I still have PTSD. I still went through a lot. I still need validation every once in a while instead of "Oh, you 'only" had DCIS" I know I am lucky. Doesn't make it easy.

Rant over. May you all live to see a "cure" for this...not a "Five Year Survival" stat in lieu of.

Bessie, How true, how true. It's funny that some of the little things in life can be worrisome and annoying, yet knowing that you have no control over whether you will have BC recurrence or a new BC leaves you more peaceful than not. Where BC (or any other cancer for that matter) is concerned I'm a glass half full person too!!

Staying up to date on a forum is hard! This is my first week back at work and, as you all understand, my life is now sprinkled with doctor appointments. I'm tired. I just want to say I appreciate the response from Kayb and all the other posts. It makes me feel not as alone to see an overwhelming amount of people who "get it." Sometimes, I wish forums were similar to Facebook where I could like your posts!

I agree that it's an oxymoron, but I also understand why DCIS is so often called "the good cancer". Lots of women diagnosed with DCIS have been told this by their doctors. Oncologists in particular tend to say this, because most of the patients that they deal with on a daily basis have much more serious (i.e. potentially life threatening) diagnoses.

It all depends on which universe you are living in at any point in time. If you are in the universe of all people or all women, any diagnosis of cancer is a terrible thing. There is no good cancer because all cancer is bad. Being diagnosed with breast cancer means that you have found yourself in a relatively small group - the unlucky 12.5% of women who get breast cancer during their lifetime. But once diagnosed, we begin to spend part of our lives in a new universe, one that is made up only of cancer patients (or breast cancer patients). Within this universe, DCIS (or any in-situ cancer) can be called "the good cancer". A cancer that has a 100% survival rate after treatment if there is no invasive recurrence? A cancer with an overall survival rate (including those who have recurrences) of ~98%? In the world of cancer, isn't that a good cancer?

I know that most women with DCIS really dislike the term "the good cancer" and I completely understand why that is. I don't like it much either. But I also understand why doctors who live the bulk of their lives in the cancer universe use that term to describe DCIS. The way I see it, I can choose to be upset by the use of term (my diagnosis, DCIS-Mi, is close enough that it too can be described the same way) or I can choose to understand it and appreciate that within the world of the unlucky (the 12.5% who get breast cancer), I am one of the luckier ones.

Bringing this back to a Stage I discussion, since this is the Stage I forum, I would say that the same thing applies, although to a lesser degree, of course. Anyone diagnosed with invasive cancer has to live the rest of their lives knowing that there is a sword hanging over their head. If you are Stage I, that sword is held up by some pretty strong wires. Might the wires snap? Yes, it's possible and it will happen to some people, but most of those Stage I swords will safely hang there forever - to the point where you can probably live your life not even remembering that the sword is there. Living with a sword over your head is not a good thing, but knowing that the wires are pretty strong and secure is good.

Great posts, Beesie. They reflect how I feel. I feel very lucky that my BC was caught early. I was initially diagnosed with DCIS only, but on final post-MX pathology, a 3mm tumor and some microinvasions were found. Suddenly, chemo was offered though not necessarily recommended. I was not as lucky as those whose DCIS diagnosis doesn't change on final pathology. But I still feel very fortunate. The sword hangs over my head but, to quote Beesie, the wires seem pretty strong at this point.

It is interesting how having a "good cancer" is relative. Although it still comes with tons of physical and emotional ramifications, a DCIS diagnosis really is as good as it gets if you are unlucky enough to get a BC diagnosis. What is interesting to me is that it is possible to think of certain Stage 4 BC cancers as "good cancers". Very strange I know. But a friend who was really helpful to me as I was going through treatment was diagnosed right at the start with Stage 4 BC and spots on her liver. This was about 4 years ago. But, the cancer is HER2 positive. So she had surgery and chemo and is on monthly Herceptin infusions for the foreseeable future. She is feeling great. She works and travels and enjoys time with her adult daughter. She feels very lucky to have a cancer that is extremely responsive to Herceptin. All indications are she will live for years as long as she has Herceptin. From her perspective, she has the "good" Stage 4 BC. But 10 years ago, she would have had the very worst and unluckiest of Stage 4 BC diagnoses.

As Beesie says, though, any cancer diagnosis forces us to confront our mortality. This is emotionally harrowing. I remember thinking that it must be someone else who was diagnosed with BC. It couldn't possibly me. Yet, of course, it was. And I will never be the same person I was before. But, that's not necessarily a bad thing.

BookWoman, I'm sorry that you have had to endure what you have already been diagnosed with. It's a bit difficult not to be skeptical, no? I wish you the best.

I'm glad I found this thread. I am surprised at how unconcerned some doctors are (and how overly concerned others can be!) I went with the most aggressive treatments offered... and I still sometimes wonder if perhaps it wasn't enough. I also don't understand why no one would do any scans for me. I know it's not "standard" but they said they'd only do scans if you have symptoms. I have been sick & in pain for 8 years before I was diagnosed with cancer... how is that not concerning enough to warrant scans?? I had multiple tumors and LVI. I am very young. I have permanent effects from my treatment that no one told me about. I'm having some odd hormone issues and no one seems to want to address them. Nothing makes sense and it angers & saddens me. I should be "happy" that it was "caught early" and just move on with my life. SIGH.

Great thread! I am a llB, but can identify with so much that you all have been told. Although my onc has never given up much in the 'positive or negative' categories, my surgeon was in the 'you got the good kind' boat.......  until it was found that I was allergic to chemo and herceptin and nearly died on multiple occasions. Not even attempting AI's. None of this was even broached when the original chemo discussion was done. Wrapping my head around this has taken almost three years and yes I also feel that it is a 'when not if' thing. My onc said my risk of recurrance is about 35%. The rad onc said it is either 0 or 100%. We just don't know. By not finishing chemo and no rads or AI's, I do understand the risks. 

I also struggle with what to say when people ask if I am cured. I guess for now. But at an appt with my immunologist, it kind of smacked me up-side the head when he said I was in 'remission'. Until that time, I hadn't thought of it that way. But I guess that is the best description I can think of. Limbo is harder to explain. It is difficult to explain to the general populous, but they get it when I say remission.

For those of you just starting, be kind to yourselves. It takes time to adjust, but there will come a day when you don't think of breast cancer every minute! Heck, I almost forgot to tell a new dr I have a bc hx!