Sentinal Node Surgery

Ihad SNB with my mast and no lymphadema issues!  It is not a problem for everyone.  Good luck.

I'm sorry you are dealing with this.

It is my understanding that if you have microinvasion, then its not DCIS anymore, its invasive and the standard of care changes.  If it were me, I would want to know if it had spread so I would probably do the node biopsy.  I know there are a lot of people on the lymphadema thread but after all, it is a support group for women with that issue.  I don't think it is a given that a biopsy of nodes will lead to this condition.  But you should talk to your surgeon more about this concern.  Also check out the thread for women with DCIS&microinvasion that are HER+  ---they may have more information for you.

I have to confess I don't really understand why some people with DCIS seem to end up getting nodes biopsied.  That seems a bit extreme at least based on my understanding of what DCIS is.

Hi realitychick, I had sentinel node biopsy last Oct for mixed mucinous/IDC workup.  Surgeon told me he took out 3 nodes but pathology report came back showing he had taken out 7! (a few tiny nodes that he couldnt see, I suppose).  All were negative for malignancy and I have absolutely no problems with lymphoedema and have an excellent range of movement in my R arm. 

I had a lumpectomy for DCIS in Jan. of this year and final path. report listed 1.75 mm of IDC, so I did undergo a 2nd surgery to check sentinel node(s) also in January. Wound up having 3 nodes removed, no arm or breast swelling problems and it's been 5 months. Definitely and most importantly, am relieved to have the nodes tested and results come back clean, and was prepared as best as anyone can be if it hadn't been.

realitychick: I don't recall BS even giving me the option to have the surgery or not have it, just was terrified going into it and would definitely not mess around with not having this done. Early detection saves lives, if/once things spread it makes things more challenging.

realitychick- I would find out exactly how many sentinel nodes he is planning on removing.  Most surgeons typically take 3.  The more nodes removed the greater your chances of getting LE.  Sisterinspirit was exactly right in her post and I would definitely check out that website.  Many breast surgeons will tell you that you don't have to take LE precautions if you only have SNB but that just isn't the case.  I think the problem is most BS aren't following up on this to find out who is getting LE and who isn't.

I know how you feel. Four years ago I had thyroid cancer.

First half taken out, then when path lab came back positive for cancer was back in 3 days later having rest of thyroid taken out.

Just had my lumpectomy last week and meeting onc and radiologist next week.

I had a SNB had 3 removed and 1 positive.

Once I get on my treatment plan I am going to meet with a LANA therapist not because i am showing signs of lymphedema, because I just want to be cautious and educated in the signs.

Best of luck

Jules

Namaste!

3monstmama.  This is in regards to not understanding why some with DCIS DX get SNB.  I can only answer for why I had it done.  I had DCIS in multiple areas.  The biopsies were very small samples from Stereotactic and ultrasound guided core needle BX. Although the pathologist called them all DCIS he could not rule out invasion on one of them because of the sample size.  The pathologist who gave a second opionion concurred. Since the DCIS involved multiple areas in different quadrants the surgeon said he would do lumpectomies if I chose that route but he said he could not recommend that option. Because of the question of invasion he recommended MX with SNB.  I chose BMX with SNB.  If I did not have a SNB and the surgical pathology showed invasion I would have needed an axillary disection to rule out met to nodes because they no longer would have had the opportunity to locate the SN. I wanted to have the lowest chance to not have to return for another operation.  I was willing to take the risk with SNB.  As it turns out the final report showed only DCIS and the PT I started seeing this week feels I have signs of lymphedema and I will be seeing a LE Therapist. Even though we make the decisions that make the most sense for us as an individual/family with the information available at the time, we cannot control the outcomes. 

Swanseagirl,

Drs receive virtually no education about LE in med school, and most do not know what to look for or what questions to ask their patients.  So most cancer clinics do not even track how many of their patients get lymphedema.  Education is important to turn the tide of ignorance and denial.  Best case scenario is for arm measurements to be taken before surgery and education of patients of what to look out for and steps that can be taken to avoid devloping LE. 

Your "swell" sister Deb

Sentinal Node Surgery means they will inject dye into your system and insure they only remove a few of the nodes that are most likely to be affected by your cancer. It is the best way to go. I had DCIS and as my surgeon explained before surgery - if it was only DCIS then of course it would not be in the node. The problem going in was that they couldn't be sure it was only DCIS, it could have also been invasive. If it was invasive they needed a few nodes to determine if it might have spread. He didn't want to go back as you are having to do now. It is easier on patient and doctor to do it during the original procedure. I was lucky and they only had to take one node. The good news that there was no sign on cancer there was well worth the small chance of problems. I have had no problems and don't expect too. The folks who I have heard of that have problems usually had several removed. It comes down to trusting your surgeon. I'm not saying you just turn yourself over without asking questions but it seems your surgeon if following the normal procedure and you need to let him / her do the things that will remove any signs of cancer so you can go on and live your life. Best of luck with the procedure. Not as big a deal as you may think it is.

I did not have an SNB.  My surgeon felt and I agreed, that while the risk of lymphedema was low, it was still a risk.  We agreed to do a second surgery for SNB if there was any evidence of invasion, which there thankfully wasn't.  I'm very happy I made that choice.

All I can say is, I met with a ton of surgeons.  Most were very eager to do an SNB as part of the initial surgery, but not all.  Deciding what I wanted to do surgically was a hard road, and it took a lot of time and consults.  Even now I'm not sure I took the "best" course of action, but I comfort myself that I did the best I could with what I knew at the time.

The SNB decision is something I never regret, though.  Turns out I didn't need it, so I'm glad I didn't have it.  Risking an additional surgery was OK with me, I didn't have a pressing emotional need to 'get it all over with' at one time.

Edited to add:  But Kate33, you had a mastectomy didn't you?  If I'd had a mast, I'd have had the SNB - because as I understood it, with a mast you couldn't go back and do it as a second surgery.....

Reality,

I 'm in the same  "boat" as you.     I thought sisterinspirit's reply made a lot of sense, especially about the LE.  I am getting so worried about LE that I have forgotten that my emphasis should be on the cancer and not the LE.   Meanwhile, I am reading about LE and will keep a vigilant eye on my arm ( s).