DCIS follow up Treatment

Although it is tempting to do you cannot compare yourself to others in this because SO much goes into these decisions.   I had a MX for DCIS with microinvasion that had clean margins and no nodes.  I did meet with an oncologist who said to do Tamoxifan-when I mentioned how worried that I was about the side effects he said to at least give it a try but he would also be ok with me not taking it. HE said it would reduce the risk of reoccurance from 1-2% to about 1/2% which to me is not worth it.  It would have also decreased the risk of a new cancer on the other breast but  I have subsequently decided to get a MX on that side to greatly reduce my risk of a new cancer there. 

When I asked my MO about should I have scans his answer was no-do you think you need them??  Sounded like I could have if I was stressed but he did not think them necessary.

Chemo was never in question and I cannot see where it would be in your case either.  MAybe your friends were HER+??

So you really should not be too concerned here I don't think,  The only thing I find a bit odd is no mention of hormonals...but then again you don't mention your ER/PR status so maybe they wouldbn't even be applicable. 

I am kind of in the boat that I think you are in....it really seems a bit too easy compared with what so many others are going through.  Honestly, this makes me very glad for the MX as you can really put it behind you (as much as that can ever be possible)

I don't think it would hurt to see a MO, but probably not necessary. After my BMX my BS wanted me to se the onc and when I got to her office she as like"why are you here?". She said no further treatment was necessary and I did all I could do for the DCIS and LCIS.



I do have to go backin 6 months, although I'm not sure why. I think you're ok at this point..

Laf, if your friends had pure DCIS then they wouldn't be getting chemo and probably wouldn't be getting PET scans. Chemo is never required for DCIS and PET scans usually are not given to women who have DCIS.  So my guess is that your friends have IDC, invasive cancer.

You mention that your cancer was non-invasive DCIS and you also say that you are Stage I... but pure DCIS is always Stage 0 so I'm confused by your diagnosis. I too had a very large amount of DCIS, but I also had a tiny 1mm microinvasion of IDC - because of that microinvasion, I'm Stage I.  But the microinvasion hadn't been there, I would have been Stage 0. 

Usually women with pure DCIS do see a medical oncologist, at least one time. The oncologist may discuss other possible treatments such as hormone therapy (if the DCIS is ER+), although certainly these treatments are optional (particularly for those who've had a MX or BMX). If the patient decides to have no other treatments then it's not really necessary to continue to see the oncologist. And there have been some women with pure DCIS who've come through this board who haven't seen an oncologist at all. However for those who have invasive cancer, a medical oncologist should always be part of the team.  

rk85, my surgeon explained that after a mastectomy, it's usually really easy to spot a lump if it develops - simply because there is no breast tissue in which the lump can hide.  I had implant reconstruction with the implant under the chest muscle.  If a lump forms either on my chest wall or against my skin, there's no question that it will become noticeably very quickly and while it's still very small.  On the other hand, scans tend to find all sorts of things that really aren't problems at all - lots of false alarms. Plus PET scans and CT expose you to a lot of radiation. That's why scans usually aren't given to women who've had DCIS or even some who have early stage invasive cancer.  

Beesie, your explanation makes sense for those having implant reconstruction, especially under the pec muscle.  My onc did say that when they take a mammogram of a breast with an implant, all they see is the implant. 

But I have gone where few have gone before...into the realm of whole breast fat grafting reconstruction.  If some breast cells were left behind and all the reasons why I scored high on the Van Nuys still exist, then I have a decent chance that the cancer will come back somewhere in the reconstructed breast, maybe under all the grafted fat.  So I am really trying to get my onc to come up with some sort of a plan to monitor for recurrence.

One of the problems is that when a radiologist or oncologist unfamiliar with a fg reconstructed breast sees a scan of the reconstructed breast, normal things can look like cancer run amuk so it can lead to unnecesary biopsies and alarm.  Another member who had the same procedure had her radiologist suggest she have her BMX repeated because the doctor did not understand the scans and thought significant amounts to breast tissue remained in the breasts.  Later, the radiologist was able to confirm that what they were concerned about was just grafted adipose tissue. 

What I am learning is that most oncologists don't want to be thrust into the role of pioneers devising a monitoring plan for a situation they are unfamiliar with.  Medical pioneers are probably born, not made.  So they would much rather just tell me I'm done than try to devise some type of plan without the backing of clinical trials proving effectiveness. 

So rather than give up, I'm going back to the onc in a year once reconstruction is done to get baseline mammos etc and try to have some sort of monitoring.

 Laf-

I just had a uni-mx for DCIS grade 2, Stage 0. Since the SNB nodes were clear and the pathology on the breast tissue showed only widespread DCIS (mine was >9cm , multifocal) and the margins were good, my official diagnosis is DCIS, grade 2. So, my BS said see you in a year. No chemo, no rads, no tamox (I am pre-meno) and I am er+/pr+ . This was at a major breast cancer center in Boston that uses the team review approach to their cases. A group of doctors (oncologists, BS's etc.) review each patient's test results etc. and they decide best course of action to take.

Have you gotten a copy of your pathology report? As Beesie said, DCIS is Stage 0, but it is graded 1,2,3. So, wondering where the Stage 1 comes from, that is why I would ask for pathology or ask the doctor to write down your official diagnosis. Chemo is used, usually if there is a thought or evidence that the cancer has metastisized beyond the breast. That is why they do the SNB - to catch evidence of an invasive cancer (not DCIS, since dcis isn't invasive) that went unnoticed in all other tests etc... Having the SNB come up clear gives them a clue that this is probably not the case. I have heard of women getting mx for DCIS without a snb, so that is great that you had a snb because it is one more piece of info. that points to no invasion...

Second opinions are always good! I agree that if it would give you peace of mind you should definitely get one. And,if you are having nagging questions, keep asking questions of your doc, I was constantly emailing my BS's nurse practitioner with questions, and she was okay with answering them, then you have it explained in writing.

That is just my input for what it is worth!! Good luck!

Steph

Laf, 

Thanks for clarifying.  Grade 1 makes sense!  And it's good, because grade 1 is the least aggressive.

Your cousin's situation is very confusing, however.  These days at most LCIS is considered Stage 0 breast cancer (never Stage II) - but for the most part LCIS is not even considered to be breast cancer.  It's generally considered to be a high risk condition, a condition that predisposes you to a possible diagnosis of breast cancer in the future.  So chemo for LCIS?  Honestly, that makes no sense at all.  I'm not saying it didn't happen but it's completely illogical.  LCIS by definition is confined to the breast - the cells cannot leave the breast.  Chemo is given only if there is a risk that there might be some cancer cells that have moved beyond the breast.  Since that cannot happen with LCIS, there is no reason to ever prescribe chemo for LCIS (or for DCIS, for the exact same reasons). And since chemo exposes the patient to side effects and risks from the treatment itself, for a doctor to prescribe chemo in a situation where it's completely unnecessary is irresponsible and very concerning.

rk85, I understand your dilemma.  The situation you find yourself in is a bit unusual because fat graft reconstruction is uncommon, at least for now.  As it becomes more common, I'm sure that there will be discussion within the medical community about how to screen women who've had this type of reconstruction. I understand your concerns - and I would share them if I were in your shoes - but I can also appreciate why an individual doctor who has never or rarely seen this type of reconstruction does not feel comfortable setting up a screening protocol.  How can he or she know what will be effective and sufficient to monitor for recurrences, if he or she has never dealt with this type of reconstruction before?  One of the reasons I felt most comfortable with implant reconstruction, despite the obvious downsides, is because it is the easiest to deal with from a monitoring standpoint. I never wanted to have a mastectomy in the first place but since I had no choice about it, I figured that I might as well take advantage of having the lowest possible recurrence risk and not do something that might increase my risk or make it more difficult to be monitored.  Thank goodness though that there are people who are willing to take the chance on something new and lead the way for others! 

Well drat Beesie, I wish I could say I bravely volunteered to forge this path for those coming after me, but the truth which you have now made me realize is that I didn't consider monitoring when I signed up for the BMX and mfg. 

Hi Ellie, I had (am having) my entire breasts reconstructed from my own fat, taken via lipo from other sites.   No DIEP or other flap surgery, I had my first round of fat grafting at the time of my BMX.  No new incisions are needed and no chunks of flesh are moved around, so no veins and arteries are disturbed.  The process does take a few rounds of surgery as the fat needs to be inserted in stages so that it survives. 

 There are threads here that explain much about the procedure, just search micro fat grafting or Dr. Khouri.  Other than the post-reconstruction monitoring issues, I have really loved this reconstruction option and am so thankful for this site to make me aware of it.  Feel free to Pm me if you have any questions, it is great to give others the benefit of my experience.