follow-up care question

I would follow your onc's advice. With grade 3 and a large tumor, I would want to followed closely. Not to scare you, but my docs found my recurrence during a routine 6-month visit (two years after original diagnosis). I had no symptoms at all, so I wouldn't have known otherwise.

Are you on tamoxifen or something like it? Those drugs do have side effects so the docs like to check on how you're doing, check bloodwork, etc.

I hated going to the "cancer center" every six months and all those tests, ugh. Like you, I thought it was overkill. And in like 98% of cases of DCIS, it probably is! But here I am now going to the cancer center several times a month, in treatment for metastatic cancer that will never end, and I long for the days of only checking in with a doc every six months.  

My ocologist said she wants to see me again in 6 mos. to discuss the tamoxifen but I'm only supposed to get a digital mammogram once a year. I'm also supposed to have a pap smear every year because of the SE of Tamoxifen. I mentioned having an MRI instead of mammogram because I have dense breasts but she does not think I need that because they found the DCIS on a mammogram. She said they often get false positives and unnessary biopsies with MRI's. The Dr's seem to have their own individual slant on things. I thought I'd be going every 6 mos. for mammos but it sounds like some Dr's don't think it's necessary.

Kim

JBinOK I wonder if I should insist on something more as I have had 2 mammo's and still not a clean report.  What they say is that there is a suspicious area that they feel is b9 and want to keep a close watch......I had an MRI that never showed my DCIS, so I wonder if I should Insist....

Thanks for the input everyone.  I am having my exchange surgery tomorrow, and my plastic surgeon has already told me that I will need an MRI every 2-3 years to make sure the implant is not leaking.  Would that MRI pick up abnormalities in the breast tissue as well?

Unfortunately, I don't have a lot of confidence in scans.  Although a mammogram did show the microcalicifications in my R breast, it didn't show the full extent of my DCIS.  The MRI didn't either.  Not being able to trust future scans was a big reason I opted to have a bmx.

I plan to alternate exams every 6 months between my normal doctor and my oncologist.  Like you, Julie, I feel more confident having my more experienced onc involved in the breast exams.  My BS is one of my best friends, so although I won't see her professionally, she's always available for questions - a very nice perk.  :-)

Heidi

I had a mastectomy on the right side 12/15/10 and now we have to watch the left breast. Fortunately it's always been my "problem free" breast. Over the last 10 years I have had 4  biopsies on my right side and then the mastectomy but no trouble in the left breast. There is no scar tissue to make it harder to see something suspicious.  That's why my Dr. thinks a digital mammogram would be best in this case.

Kim

My Onc said he won't check my tumor markers and he also won't order MRI's. I personally would be more comfortable with more testing rather than less. (Especially since I have been having quite a few aches and pains that are not going away and I don't feel like my Drs. are taking me seriously at all!)

PetJunkie - Your situation is my worst fear. It is good to hear that you are doing so well. Have a wonderful vacation!!

Bees, I understand that the micro invasion means something. I really truly do understand what it was, and the team of doctors had a long discussion about it before staging me and recommending my follow-up plan. I went back to look at my original pathology report from the biopsy, just for you, so i can try to get you to understand. What i had was .37mm of IDC in a 9cm DCIS. i know that in 2011 going strictly off the books, any invasive cells mean stage 1.



My doctors in 2007 made the decision to stage me (for the purpose of my treatment plan, follow up plan, and medical records) as stage 0. The placement of the IDC cells and their size did not, in the team's opinion, warrant a stage 1 diagnosis. They felt that except by pure luck, we really shouldn't have found that IDC in the first place.



Beesie, you seem to want to focus on this micro invasion as if it means that i was in a different group as the DCIS women today and they shouldn't be scared of stage IV recurrence. I think you've been missing my point-- I think it's important to share my experience because there are other women out there who are told they are stage 0. They may have a micro invasion that was found or they may not-- they will never know if one little invasive cell was in their tumor. They can't say for sure that one cell didn't escape through the blood vessels and that cancer could metastize despite clean lymph nodes.



My point is not to scare DCIS women and make them think they are going to get mets and die. Not at all. My point is that my experience-- mastectomy, SNB, being staged at 0, going on tamoxifen, getting follow-ups every 6 months-- this experience is quite common. I had about a 3% chance of recurrence, as told to me by my onc in 2007. It's sad that it happened to me, but no one knows if they will be in that group. So when someone like the OP asks about follow-up care, let me serve as an example of why it's important for DCIS to be monitored.



In the other thread, the OP was asking about DCIS to stage IV experience. What frustrates me is that we weren't talking about how if there is one invasive cell then the DCIS diagnosis was wrong. We can explain cells and pathology and statistics until we are blue in the face. What I was responding to the OP about was the EXPERIENCE of going from being a DCIS patient to the experience of being a stage IV patient with nothing in between. Yes, we knew about that little micro invasion. I was still told it was stage 0. If the biopsy hadn't picked up those cells? I think that happens to lots of women.



Will women diagnosed with DCIS, micro invasions or not, end up with stage IV cancer? Gosh, how very very unlikely. But it's possible. So I hope they don't treat DCIS like it's a no-big-deal diagnosis, I hope they are vigilant with follow-up care, and i hope they enjoy every moment they can.

petjunkie, I really appreciate the additional information and your explanation of your experience.  

You and I agree on the most important points, which is that no one should treat DCIS like it's a no-big-deal diagnosis and everyone should be vigilant with their follow-up care.

Where we disagree probably stems from how we see the world.  I'm analytical.  A numbers person.  I find comfort in understanding my risks.  And when you look at the numbers and assess risk, a diagnosis of pure DCIS and a diagnosis of DCIS-MI might look the same, but really, they are oranges and grapefruits.  In the same family but not really the same at all.

Pure DCIS does not present any risk of mets.  Of course, as we know from the discussion in the Stage IV forum and the discussion on the same topic that I started up in this forum, sometimes women who appear to have pure DCIS do go on to develop mets, without any recurrence in-between (having an invasive recurrence is a whole other story; at that point, the diagnosis and prognosis is IDC and no longer DCIS).  When this happens, when DCIS progresses directly to mets, the reason, according to current medical/scientific understanding, is because a small area of invasion, usually just a microinvasion, was missed.  So yes, this can happen. What's the risk? According to the guesstimates that I calculated in the other thread, at the high end the risk is probably about 0.2%.  1 in 500.  2 in 1,000.  20 in 10,000.  (And please, if someone has a better handle on this risk level, I'd love to know.)

DCIS-Mi, on the other hand, does present a risk of mets. With any amount of invasive cancer, there is the possibility that some of the invasive cells might move beyond the breast and over time, develop into mets.  This risk is exactly the reason why women with invasive cancer who are node negative are still often prescribed chemo.  The role of chemo is to track down any rogue cancer cells that may have moved into the body, and kill them off.  One of the criteria for the consideration of chemo is the size of the invasive tumor.  The reason for this is simple: The larger the tumor, the more cancer cells; the more cancer cells, the greater the risk that one or a few might make it out of the breast into the body.  This is why those who have larger tumors are usually given chemo, regardless of their nodal status and often regardless of the aggressiveness of the cancer.  What this means is that for those who have a microinvasion - a 1mm invasive tumor or smaller - is the risk that some cells might escape into the body is very low, simply because there aren't that many cancer cells there to make the move.  I was told that my risk of mets, having a microinvasion but having clear nodes, was around 1%.  1 in 100. 10 in 1,000. 100 in 10,000.  It's a low risk, but it's about 5 times the risk of someone who has pure DCIS. 

To me, as a numbers person, this difference in risk is meaningful and significant. I appreciate however that this may not be particularly significant to somebody else.  However the reason I focus on it, the reason why it's so important to me to clarify when someone has pure DCIS vs. DCIS-Mi (or a more advanced diagnosis of "DCIS"), is because in 5+ years on this board, I have seen dozens and dozens of women diagnosed with pure DCIS who've been completely consumed by a fear of mets. In fact there was a research study a couple of years ago that found that women with DCIS are just as likely as women with IDC to think that they will get mets. As a result, one of the things that I try to do when I post on this board is ensure that women with DCIS (and DCIS-Mi) have the best and most accurate information possible, so that they understand their risks, but don't over-estimate them and aren't consumed by them.

What's interesting is how often on this board women talk about how their doctors downplay the risk of DCIS.  There is a movement underway within the medical/scientific community to try to change the name of DCIS to remove the word "carcinoma" so that women don't worry so much when they are diagnosed with DCIS. I think that's outrageous. DCIS is breast cancer and it needs to be treated seriously.  

On the other hand, what is also interesting about being on this board is seeing the degree to which posts from other women influence and frighten the c^@p out of women with DCIS.  As I talked about in one of my posts in the "DCIS to Stage IV" discussion thread, there are many women on this board - probably a 100 or more in my 5 years here - who misstate their diagnosis and claim to have DCIS when in fact they have invasive cancer.  Some just have microinvasions - and lots of us with microinvasions do feel more comfortable in with the DCIS women - but many have larger tumors and some are Stage II or Stage III.  It's when these women who have "DCIS" talk about their treatments and their tests and the progression of their cancer that I see women with DCIS start to panic and freak out.  Look at all the women with DCIS who had chemo! Shouldn't I have had chemo?  Look at all these women with DCIS who now have mets!  Why did my doctor tell me not to worry?  Why isn't he running every test in the book to see if I have mets?   

So I guess I'm sort of schizophrenic on this issue.  On the one hand, I hate when the medical community downplays DCIS.  I think it's dangerous for any woman with DCIS to think after her treatment that she's all done and doesn't have to worry about her regular check-ups and screening. I'm the first person to jump in and correct those misconceptions. On the other hand, I hate to see women with DCIS living in fear because they over-estimate their risk based on what they read on this board.  So here again, I'm the first person to jump in and correct those misconceptions (which doesn't make me the most popular person around here some of the time).

What it comes down to, of course, is that those who have DCIS, and those who have DCIS-Mi, need to be vigilant but also need to recognize that the odds are very very high that they will be just fine.