Lumpectomy for IDC but DCIS left

abcd

 I had lumpectomy twice.  On 19th May the first one and no clear margin.  Second lumpectomy was on 9th June and again one margin showed just 0.  We are told DCIS left. The surgeon saying he took away the breast tissue as much as possible and mastectomy will not help.  According to him mastectomy does not remove the muscle ( pectoralis) so mastectomy will not help.  He reassured that DCIS can not spread from there but I am not convinced.  They are now going to have  MDT ( multi disciplinary team ) meeting where surgeon, oncologist and histologist will discuss.  My family and I are confused and worried.  Anyone had this experience?  Invasive cancer has been removed according to the histology but this DCIS is still left.

Please enlighten me if you can.  Thank you.

Emaline

Well DCIS can turn into invasive cancer...or it may not ever.  Do you know what grade DCIS you had?  Why are they not following up with radiation? I know we have a girl whose surgeon was not happy with the margins and recommended a follow up with radiation.

LittleMelons

Hi abcd -  I'm sorry that you are having to worry about this.  I also had IDC + DCIS with the DCIS component being .3 mm. from the chest wall.  That's one-third of a millimetre which seems like nothing essentially. Like you, I was very worried about this.  My docs said that 1) they had removed all the breast tissue and DCIS needs breast tissue to spread, 2) the chest wall acts as a natural barrier, and 3) they would do radiation boosts to that area to zap anything that may be left.  They did not seem particularly concerned about that close margin.

I'm wondering how there could be DCIS left if they have removed all the breast tissue to the muscle. Did your doc say you would be receiving radiation with boosts? I hope the MDT will give you an explanation and treatment that will ease your mind.  All the best.  Please keep us posted.

abcd

Hi,

Thanks to Emaline and Littlemelons for your reply.

 I have got Oncologist appt on 5th July and an MRI appt on 8th July.  Hopefully the Oncologist will enlighten me regarding the next step although Radiotherapy was pre planned after the surgery.  I had FEC-T chemo to start with which reduced the size of the tumour successfully from 20mm to 6mm.

 Oncologist already organised for radio after the surgery but the date was not fixed because of surgery twice.  Those of you who had radio ..... how long was the interval between surgery and radio for the purpose of allowing healing?  Was radio too harsh on you?  I was told my chemo was very strong and the strongest dose was given and I know it was really harsh, they praised me for being able to take it ( although I refused the very last taxotere).

Thanks. 

Anonymous

abcd- Typically, if you have a lumpectomy and they do not get clear margins they will recommend mastectomy possibly with radiation.  During the mastectomy they would probably also do a sentinel node biopsy (SNB) and test a few nodes.  If the nodes are positive for cancer they would recommend chemo.  Like others have said they don't just leave DCIS in there as it can become invasive.  Is it possible you misunderstood?  Also, you cannot get breast cancer in your pectoral muscle.  Breast cancer is in breast tissue which would all be removed during a mastectomy.  Breast cancer can appear else where if it has metastasized but I have never heard of this happening in muscle.  It's usually bone or the lungs.  I am glad you are having a meeting with the multi-disciplinary team.  Make sure you write down all your questions, take someone else with you if possible and if you don't understand something ask them to explain it again.  Also, ask for a copy of all tests you've had done and the results and review them.  This all can be very confusing, and by the time you're done you'll probably feel like you've earned your medical degree, but you need to take charge and educate yourself as much as possible so you can make treatment choices.  Because ultimately they will leave it up to you to decide how you want to proceed with treatment and possibly reconstruction.  I know how overwhelming it can be at first but once you have a plan in place it gets much better. Good luck to you.

abcd

Hi Kate,

Thanks for your reply.  My axillary nodes have been removed and details histology report been discussed.  One of the node showed metastasis.  I had full chemotherapy prior to surgery which reduced the size of the tumour from 20mm to 6mm.  The plan was and is now, to give radiotherapy but the MDT team will decide the time and the dose.  Also meds like oestrogen blocker will be started.

You are right breast cancer developes in breast tissue.  I think what the surgeon meant is carcinoma in situ lying very posteriorly close to the fascia that separates the breast tissue from the pectoralis ms.  However, here in the UK for the oncology subject, NO one doctor will decide.

There will be MDT meeting where breasr surgeon, Histologist and Oncologist will all discuss an individual case and final decision will be made. 

Thanks for your reply.

LittleMelons

Hi abcd - Our situations sound very similar.  As I mentioned in a previous post, the DCIS component of the tumour was 1/3 mm. from the chest wall.  You will likely get radiation therapy that consists of whole breast treatments and "boosts", i.e. radiation that is targeted to the tumour area.  I had 16 whole breast plus 8 boosts.  I did not find radiation bad at all.  My skin turned somewhat red and it was itchy, but no blistering.  It was pretty easy overall.  The worst part was going there and waiting around every day (so take a good book lol).  I had my lumpectomy + SNB on Sept. 17th and radiation started on Dec. 1st.  I think you will feel much better after your meetings with the doctors when you get things explained.  I now take an estrogen blocker as well.  All the best.  Please let us know how you are doing.. 

Allenan

Hello everyone,

Fairly new here

I had lumpectomy for IDC on May 20th with re-excision on June 6.   BS says I still have  DCIS left.  Now I am schedule for a THIRD time to achieve clear margins.  Very very nerve racking.  Surgeon did not mention anything about chest wall or if I need another SNB. I nad 9 nodes taken on May 20th and all NEG.   I feel like time is going and I have not even started chemo yet.  My oncotype came back friday and score is 26.

I am trying the find the most appropriate site to post.

Path report says   "DCIS is <1mm of inked margin in 3 slides".  I asked BS what this means and he told me "not to worry" lets try again and hope for the best. 

I wonder whay it is taking more than 2 tries to achieve clear margins and where is this all leading to.  I do not even know the proper questions I should be asking at this time.  Anyone has similar experience?  Would appreciate some feedback.  Thanks

LittleMelons

Hi Allenan - Try not to worry too much.  I think what you are going through is common.  The small IDC tumours and the DCIS are not not visible to the naked eye, so the surgeon cannot tell for sure whether he/she has got it all until it is checked by pathology.  While this causes you to worry right now, I'm sure they will get it.  Are you definitely having chemo?  I have very similar stats to yours and my onc was adamant about no chemo, although I did not have an Oncotype test.  With your stats you have a good prognosis.  Don't worry, this will get taken care of and you will be able to move on. Take care.

Anonymous

Allenan- I did send you a PM.  Let me know if there's anything I can do to help.  (((hugs)))

Allenan

Thanks Kate,   I sent you back a reply.  Thanks LittleMellons.   After reading your posts, I feel better.  I still need to do my homework though.  I see the medical oncologist on Wed 6/22.  I made an appt to see my gyn also.  They gave me an appt for the radiation oncologist for July 26 and I am thinking that is a long time to see the radiation oncologist.  I will try to call and see if I can move it up.  It seems that doctors are going on vacation --thus the delayed appts.

Anyway, I am having my re- re-excsion this Friday and trying to get myself mentally ready.  The actual re-excision is never the problem.  Its the week to 10 days waiting period for the pathology to come back.

abcd

Hi Little melons,

Thanks.  It really helps to know someone in the similar situation.  Are you in the UK  or  USA? It's just that the protocols can be a bit diff from place to place.  However, I am sure it's more or less the same.                                                                                                                                        I was given the options prior to the start of any treatment like...                                                     1.  Mastectomy followed by chemo and then radio.                                                                        2. Chemo first followed by lumpectomy then radio                                                                    3. Lumpectomy to start with ( was not a good choice for me because of the big                                size lump 2cm ). .... followed by chemo, radio.

 All the above would accompany axillary lymph node clearance ( scan showed 6 enlarged nodes).  

I took the second choice to save the breast and surgeon agreed because many preferred that way.  I don't regret because the tomour did really shrink and everyone was pleased.

I believe the medical team here because it's national health service here and NOT private, so no one has any personal gain.  The surgeon seems very confident and now waiting for MDT meeting.

I am grateful to you for telling me radiotherapy will not be harsh.  Probably in our case where situ is in such a site that can not be removed surgically, radio should help.

Wish everyone the best in their treatments. 

LittleMelons

Hi abcd -  I am in Toronto Canada.  It's good that you and the docs know that the chemo was effective.  My radiation oncologist, who specializes in breast cancer, said the raidation is very effective.  In Canada we seem to get fewer treatments than our American sisters. I had 16 whole breast plus 8 boosts to the tumour area.  I'm not sure if the radiation dosage is different than in the States where more treatments are given.  I'm not sure how things are in the UK. You will receive detailed information about how to care for you skin, creams to use, mild soap, no deodorant, etc.  I did not have chemo, but people have told me that radiation is much easier than chemo for most people.  Take care and let us know how you are doing.

 Allenan -   You will feel better after seeing you med onc tomorrow, is it?  If you are having chemo, you will get that first then radiation, so July 26th to see the rad onc is not bad.  If you are not having chemo, then I would push for an earlier appointment with the rad onc.  My radiation was delayed due to a lost referral, and I had to get a little pushy to get it going.  All the best.

Allenan

LittleMelons:

You were absolutely right.  I just came in from seeing the Rad Onc.  What a woman.  She explained everything and wrote down what she explained and gave it to me.

By the way, what was your Oncotype score.  Mines is 26. I know you did not get chemo but our stats are so similar.

Now I have to decide whether I  want mild, Moderate or Strong.  I did not realize that it had to be my decision.  My Onc seems to lean toward mild when she was speaking to me.  She showed me the different data on recurrence with or without chemo, rads, hormones and different variations.  My Oncotype shows a 17% recurrent if I do nothing.  With the chemo, it drops to single digits (8-11), etc.,

Once I make the decision, I will start in 2-3 wks.  I must say, the side effects of the moderate and strong mixture sounds brutal.  I want the most agressive tx since my tumor is moderately agressive.

Mild = Cytoxan and Mesate and Flurouracil (aka Adrucil) Mixture

Moderate = Taxol andCytoxan mixture

LittleMelons

Hi Allenan -  Sounds like you are making progress and it's great that you like your Onc. that helps a lot.  I did not get an Oncotype test as I live in Ontario and it is not routinely done here.  I asked my Onc if it could be done and he said it would not change his treatment plan, so would not order it. Your Onc is probably leaning toward mild chemo (CMF) because you have no positive nodes and an intermediate grade.  I hated the idea of chemo in the beginning because I was scared of the SEs and didn't want to lose my hair.  However, by the time I saw my Onc I actually wanted it to really do all I could, but my Onc was adamant about no chemo.

I would recommend that you post your situation on the Chemotherapy forum.  I'm sure lots of people will come on and give you information there.