treatment options

susieQ610

I recently had lumpectomy for ILC resulting in 1 positive sentinal node and positive margins in a tumour that turned out to be larger than expected due to infiltrating cells. My Dr has advised that I can have chemo and rads before recommended Mx and then have reconstruction after the treatment.  Has anyone else had this treatment before?

anxious Susie

karen1956

Susie...I was not a candidate for lumpectomy due to multiple tumors in my breast as well as positive lymph nodes....my Tx protocol was bilat (one side prophy) with recon, TAC chemo x 6, rads, AI's, and ooph....

Sorry that you are having to go down this journey, but glad you found this great site....lots of information and support.

Seabee

anxious Susie--You need to supply more information in order for someone to say anything helpful about your treatment options.  What grade and stage is the tumor? What are your ER/PR  and HER2 results? There are of course other possible treatment plans, depending on your specific circumstances.

It is true that ILC sometimes resists attempts at lumpectomy, but a lump can succeed on second and even third attempts. I don't know why your BS isn't giving you that option.  Where are you being treated? How big is the tumor and why was its size a surprise?

If you have doubts about the direction things are heading, get a second opinion from a reputable cancer center.

susieQ610

Hi Seabee

Thanks for reply - I thought I had included my diagnosis in the post but it's not showing?

It's ILC 5- 6cm Stage111a Grade 1, 1 SN+  ER+/PR=, HER2-

You are right I wasn't given enough info by first dr and have since seen another DR for second opinion. He recommends Mx since there is more tumour left and my affected breast is very small. Thankfully the other breast is healthy!!

It seems also that the treatment options do depend on staging of nodes.

They can't tell me which chemo is best until they know how many more nodes are involved so more surgery for more removal of nodes looks inevitable.

I feel I am between a rock and a hard place right now. The chemo sounds hellish and I,m wishing I could get some good news for a change.

Seabee

I can see why a mast was recommended, but if the  tumor is grade 1 and HER2-, and you have no more than three involved nodes, you might consider getting the Oncotype DX test , which indicates in many cases whether or not you would benefit from chemo. Chemo is most effective on aggressive tumors, and while yours is large, it doesn't seem to be very aggressive.

Plenty of posters here will tell you that chemo is "doable" and not so bad  as they expected, but I didn't see any point in agreeing to a treatment that wouldn't be of benefit to me.

Good luck with the nodes.

Kleenex

The other thing that strikes me is the radiation - was the tumor in a location where they won't be able to get good margins even with a mastectomy, or do they tend to do radiation with mastectomy with positive nodes? I haven't heard of radiation before mastectomy...

AnacortesGirl

There is an advantage to the additional surgery for the node removal - they will have a definite answer on the node involvement.  Scans can be inaccurate.   You've mentioned that you've gotten a second opinion but it's not clear if you've only seen surgeons or if you have also see oncs.  I find the oncs more accurate on the chemo options and benefits.

The decision on whether or not to have chemo really resides with you.  If you feel the answer is no then ask yourself if you will regret the decision in the future.  And vice versa.  Chemo at this stage is preventative.  We are trying to rid the body of all the cancer with the intention that we will never get mets.  Once you have mets then chemo is just trying to manage the cancer - it is no longer considered curable. 

Chemo is not fun but for most of us it is not hellish.  Remember that the women posting are usually writing because they are experiencing problems and looking for advice.  Many women continue to work and function quite well while on chemo.   The supportive drugs are quite good.  I went through some bad patches during my chemo but I don't regret it and would do it again if I were put back in the same situation that I had a year ago.  I hope that once I finish this current regimen that I will never have to take another chemo drug again.  But I'm going to do what I have to do in order to fight back.

Grade 1 is a good indicator.  Shrinking the tumor by using chemo is commonly done so they can get clean margins.  Keeping the tumor away from the skin and chest wall is where you want to be.  You can always try it and if it doesn't appear to be shrinking the tumor and the SEs are not managable then other alternatives can be looked at.  Even though my grade 3 tumor had no response to chemo I was glad that I hit it systemically to try and irradicate any cells elsewhere in the body before they became big enough to be a detectable mass.

It's all about what you are comfortable doing.  Keeping asking questions of your onc until you have the information that allows you to make a decision.

AnacortesGirl

Good catch Kleenex - I missed the part about rads before the mx.  Doing rads with positive nodes is very common.  But I have never seen anyone get rads before an mx or even seen any studies talking about doing the two in that sequence.

susieQ610

thanks to everyone for really helpful information.

 I did ask lots of questions at my recent appt with onc and she offered me two regimes - TC if less than 4 nodes affected or TAC if more than 4 nodes. Unfortunately I only have results fromSNB to go by ie 1 positive node so far. I have decided to go ahead with the mx and axillary dissection since will have more pathology info before proceeding to chemo. I understand that the TAC regime is more risky than the TC chemo. I,m living in Australia and we don't have oncotype testing here. I think it's a great idea and I might ask for them to send a sample to the US for testing. It's pretty expensive though but probably worth it. I have my surgery this wed.  

thanks to responders

susieQ610