DCIS questions and confusions, personal stories and issues

Thank you proudspin about the generic Lipitor!

Just wanted to stop by and report on my DCIS surgery that happened on July 30.  Doing pretty well with the recovery .  Saw the surgeon Friday Aug 3 and he was pleased with the surgical results and said he got more than he expected with good margins. He took tissue the size of a tangerine slice. He turned me over to the RO and MO teams and I am to see him in 6 months for followup. I am not sure I am going to keep the RO and MO appts next week or have radiation or drug therapy. I will be 66 next month and seems the radiation is for protection/prevention long term against recurrence and at my age I am not in the long term business. The effects of the radiation especially scare me and the cost could destroy our finances. Medicare is not going to pick up all of it and we are still struggling from the out of pocket cost of my husband's heart surgery in 2009. I am trying to figure out how to pay for my biopsy costs as it is.

Seeing what infobabe posted about the risks outweighing the benefits of tamoxifen made me think twice about that treatment too. You guys share great information.

I don't mean to be a downer to you ladies but I am not in a good place right now and want to thank you for your kindness and support over the past few weeks. You are a brave and strong bunch and I wish you all health and happiness.

terrikoala- I am so happy to hear you got clean margines, that is good news, You are just as brave and strong as the rest of us. ( I know I am usually scarred sh@tless hahaha) we r all floating this boat together. I am sorry to here you are having a tough time and not in a good place but  coming here to the boards does help, at least you r with women who can relate to what your going through and we can support each other through our down times as well as our good times , you are a part of that contribution also. ( can you tell I just learned about the emotioncon?)

Terri, I appreciate that you are planning to pass on having both radiation and Tamoxifen but I'd suggest that you keep the appointments with the RO and MO.  

With your pathology (a small, grade 2 tumor), good surgical margins and your age, it's probably relatively low risk to skip rads and Tamox.  However I would not recommend that you make this decision based on what you've read here; you really need to talk to your doctors about this. We are all laypersons here, providing information based on our own understanding and interpretation.  I've done a lot of reading up on DCIS, and over 6 1/2 years I've seen hundreds if not thousands of women come through this board and talk about their situations. But I have no idea if your recurrence risk, without any further treatment, is 4% or 8% or 12%. To really understand your situation and your risk and to know for sure that you are making a low risk decision, you need to have the facts about your specific situation.  And that's where the RO and MO come in.  

Please talk to the RO and MO and ask what they think your risk of recurrence is without any further treatment, and how much benefit you will get from radiation and Tamoxifen in terms of risk reduction. Ask about rads alone (without Tamox), Tamox alone (without rads) and what your risk reduction will be if you were to have both rads and Tamox.  That's the information you should have to make this decision. Hopefully the numbers you get from them will confirm to you that your recurrence risk without any further treatment is low enough that you live comfortably without reducing your risk by having rads and/or Tamox. But what if one of them tells you something that none of us here thought about or mentioned? Or what if there is something about your pathology that presents more risk than what you assume?  Hopefully that won't be the case but honestly I would be concerned if you made these decisions without having the input from the RO and MO.  I know that they might recommend something different than what you decide to do, but if they provide you with the facts about your recurrence risk and how much benefit you will get from rads and Tamoxifen, then you will have the information you need to make an informed decision. 

Infobabe....when I saw the surgeon Friday the  surgery path reports were not there even though they thought they would be but they expected them that afternoon. The wonderful woman who takes care of all that in his office will mail to me immediately when she sends copies to the RO and the MO. I have no idea if the paths will show the size and the margins????? If I do keep my appts with the RO and the MO can they tell me?

Size and and margins will all be in the report.  Make sure it is all DCIS and nothing else in there.

Do your friends and family really want to take the responsibility to make that decision for you?  I would need a medical confirmation.

I am not going to nag you anymore but please take that next step. 

Terri - for me the MO had all the info about risk and recurrence. She's the one who knows all that stuff. He/she should be able to give you all the numbers and if the MO hesitates, push for them, even he/she has to look them up and get back to you.

Terri~

Lots of living .... It's worth it.

and wanted to add......I personally was not satisfied with just clean margins.  They have no idea what microscopic cancer cells are left behind, that may not even show up on MRI or Mammo.  Rads brought peace of mind that I radiated those little bastards.  I wanted to do everything I can......as I plan on living a hell of a lot longer than 66, 76, or 86

I don't mean to be disagreeable, but I'm a bit concerned by the statement about not trusting clean margins and having rads as a way to get peace of mind.  Shayne, I realize that you were talking about your own situation only and I appreciate that this may have been exactly the right thing to do in your situation.  But every situation is different and those reading your comment may interpret what you said to apply to themselves as well. However, looking at it that way could lead to a very wrong (i.e. a riskier) decision for someone else. 

It is absolutely true that even with clean margins, you don't know if a few cancer cells might have skipped beyond the margin and therefore might be left in the breast. That's exactly how a recurrence develops. And that's why clean margins don't provide a 100% guarantee against recurrence. This is why an overall assessment of all the clinical and pathological factors is so important. How large was the area of cancer? Was there just a single focus of cancer cells or was there more than one?  What is the grade of the DCIS?  Was any comedonecrosis present?  What is the age of the patient? And possibly most important of all, what was the size of the margin?  A 2mm margin is considered clean but with such narrow margins, the risk is pretty high that a few cancer cells might have moved beyond the margin, particularly if the cancer is on the more aggressive side.  A clean margin that is 10mm in size is completely different. The risk that some cancer cells might be left in the breast of someone who has 10mm margins is very slim, especially if the cancer was in a single focus and was not aggressive. 

This is the assessment that the MO goes through when determining recurrence risk.  It's so much more than just saying that someone has clean margins. If someone has good margins (let's say 6mm or more all around) and a small (let's say 0.8 cm), not very aggressive cancer (let's say grade 1 or 2 without comedonecrosis) and if this person is not young for a BC diagnosis (let's say she's 60 years old), then the recurrence risk for this woman, with no further treatment, might be only 5% (I pulled that out of the air but it's probably in the ballpark).  In this situation, to have radiation just for peace of mind might actually put this women at a greater health risk than not having radiation.  Rads would be able to reduce recurrence risk to 2.5% (a 50% reduction in risk) but at the same time, rads might expose this women to more than a 2.5% risk of other potentially serious health issues related to the rads themselves.

On the other hand, if someone has clean but close margins (let's say 2mm) and a larger (let's say 3cm), more aggressive cancer (let's say grade 2 with comedonecrosis or grade 3) and she's younger (let's say she's 42 year old), then the recurrence risk for this woman, with no further treatment, might be as high as 30%... or it could be even higher.  In this case, rads would be able to reduce the recurrence risk to 15% (a 50% reduction in risk). Rads would also expose this woman to the possibility of other health issues related to the rads themselves, but in this example it's clear that the benefit from rads will far outweigh the risks. 

So to suggest that someone shouldn't be satisfied with clean margins is just too general a statement.  It's an over-simplifiication of what really needs to be considered.  And that's what the MO is for. 

Terri, I hate to tell you this but 66 is not old!  I just turned 66 in May.

Please check in with the RO and the MO and get the info from them.  If you don't check with them you will not be making a decision with all the facts.  To me that would be a tragedy.  Its a whole different ball game to know all the facts and then decide what feels right just for you. 

I am awaiting pathology reports from my Lumpectomy lastthursday..my dx was DCIS with high nuclear grade. How often is invasive cancer found in DCIS? And if it is invasive is chemo the next step after second surgery?? Is mx a better option? Thanks

Joyce, my understanding is that IDC is found mixed in with the DCIS in about 20% of cases where the biopsy showed only DCIS.  In most of those cases the amount of IDC is very small, usually just a microinvasion or two (I had that) but in about 5% of cases the diagnosis is more serious.

If invasive cancer is found, whether or not chemo is required depends on many factors.  It certainly shouldn't be assumed that chemo would be necessary.  If the amount of invasive cancer is very tiny, then chemo most likely wouldn't be recommended.  And even if the amount of IDC is larger, if the cancer is ER+/PR+ and HER2-, and if the nodes are clear, then there is still a good chance that chemo wouldn't be recommended.  In that situation, usually the Oncotype test would be given and the chemo decision would in large part be made based on the score from this test. The situations where chemo is more likely to be recommended are when there are positive lymph nodes, or if the cancer is particularly aggressive, either HER2+ or triple negative, or if the Oncotype score is high.

As to whether it makes sense to have a mastectomy if invasive cancer is found, the answer is "no".  If it's determined that someone needs chemo, she will need chemo whether she has a lumpectomy or a mastectomy.  The type of surgery doesn't change the treatment plan for invasive cancer (with the possible exception of radiation). The concern with invasive cancer is that some cancer cells might have slipped out of the breast and moved into the body, either through the lymphatic system or the vascular system, before the patient ever knew she had cancer. Having surgery to remove the entire breast doesn't affect what happens to cancer cells that might have already moved into the body, so having a mastectomy does nothing to reduce the risk that comes from having invasive cancer.  That's what chemo and hormone therapy is for - those treatments are systemic, i.e. they treat the whole body, going after breast cancer cells wherever they might be in the body.  

I hope that helps.  And good luck!  Fingers crossed that your final pathology shows just DCIS. 

Edited to add:  Joyce I just noticed your comment about a "second surgery" if invasive cancer is found.  If invasive cancer is found but your lumpectomy margins are all clean, then you won't need an additional surgery, except an SNB to check the lymph nodes, if you did not have that done at the time of your lumpectomy.