Surgery Monday....question

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lcinsetn
lcinsetn Member Posts: 14

I'm having a partial mastectomy on Monday.  After many tests (ultra sound, MRI, MRI guided biopsy, stereotactic biopsy) on areas on both breasts, it really looks like it's DCIS and we expect no surprises.  What is your experience and advice on the sentinel node biopsy?  Is it really necessary?   My surgeon recommends it so I am leaning toward it, but it seems like over kill.  I need to decide by the end of the day (No pressure, though) cause I can say yes and change my mind.  Thoughts appreciated.  I'm going to do my searching on it now.  This just came up yesterday in our pre-surgery meeting.  Thanks!

LC

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Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2014

    A partial mastectomy is the same as a lumpectomy - it's just another name for the same surgery.  With a lumpectomy, a sentinel node biopsy can always be done after the fact, should any invasive cancer be found.  So normally with DCIS, an SNB is not done at the time of surgery, when the surgery is a lumpectomy and if the expectation is that the final diagnosis will remain DCIS. 

    The NCCN treatment guidelines for DCIS refer to an SNB only for those who are having a mastectomy:  NCCN Patient Guidelines DCIS    See pages 18 - 19 for the discussion about having a lumpectomy for DCIS, and pages 22 - 24 for the discussion about having a MX for DCIS and the reference to having a sentinel node biopsy during the MX surgery.

  • KLJ
    KLJ Member Posts: 284
    edited March 2014

    Personally I would have whatever test was available while I was there and undergoing surgery. I opted for a prophylactic removal of my right breast even though there was no evidence of disease after MRI's and biopsies. Some people questioned my decision but I did it for me. Post surgery showed that the rt breast was very busy and probably would have ended up cancerous. Better to be safe I say! Wishing you all the best!

  • Annette47
    Annette47 Member Posts: 957
    edited March 2014

    Since you are having a lumpectomy, unless they have already determined there is an invasive component, I would forgo the SNB.  As Beesie says, it can always be done later should something unexpected turn up.   A SNB carries with it a life-long risk of lymphedema (the risk may be low, but it is present), and to my understanding significantly more pain and longer recovery than the lumpectomy alone.   I had both and can tell you that the SNB incision is the one that caused the most discomfort by far.

    The "better safe than sorry" would be more if you were having a full mastectomy and would no longer have the ability to have an SNB in the future .... with a lumpectomy, they can always go back and do it later if necessary.  Yes, if that is the case you would have the downside of recovery from two separate operations, but since micro-invasion is only found in about 20% of DCIS cases (if I remember correctly - if not, Beesie can correct me!) the odds are drastically in your favor that it would not be necessary.

  • Rubiayat
    Rubiayat Member Posts: 144
    edited March 2014

    Like Annette, my SNB incision caused the most discomfort, took a long time to heal, and is still sore five months later. I am still numb under my arm from my armpit halfway down to my elbow. After the SNB I learned of the risk of lymphedema and partly wished I hadn't done the SNB. I did have IDC found in the first biopsy, so it probably was a good idea to check my lymph nodes just in case. As others have said, you can always have it later and why put yourself through the discomfort and risks if you end up only having DCIS.

  • Lilyluv
    Lilyluv Member Posts: 160
    edited March 2014

    My doctor didn't even mention it.  She wasn't expecting any surprises either and didn't do one.  All was fine and I had radiation following the lumpectomy.   Are you following up with radiation?  Usually they don't a SNB it for pure DCIS unless the biopsy looks questionable for microinvasion.  If the doctor doesn't suspect any invasion, it may do more harm than good in terms of pain and lymphedema.  You can have it later if they find a problem.   Personally, even with high grade DCIS, I wouldn't have one.  If it turns out to be what your doctor suggests, you may go through an unecessary procedure that can cause problems for the rest of your life.

  • motherofone
    motherofone Member Posts: 62
    edited March 2014

    This was exactly my situation.  Dr. thought pure DCIS.  We discussed Sentinel node biopsy and she told me if there was no invasive cancer it was not necessary and that the incision was separate from the DCIS incision and would likely be more of troublesome than the DCIS incision.  My pathology returned the following week and microscopic invasion was found.  Yesterday, exactly two weeks after my lumpectomy I returned to the same surgery center for a Sentinel Node Biopsy because of the mirco-invasion. It has just been 24 hours since my SNB, and I would agree that this incision and procedure is more painful.  I'm still just sticking with Tylenol, but it is definitely a bit rougher.  I will also note that the SNB was down under general as opposed to twilight for the DCIS.  With all of this being said.  I would do it exactly the same way.  DCIS surgery than wait for pathology.  It is likely you will not need the biopsy.

  • motherofone
    motherofone Member Posts: 62
    edited March 2014

    One question for all of you vets out there.  I was told that 1-5 would be taken, but 2-3 would be best.  She only took 1.  Is that good or should I be concerned that if it comes back positive, we will need to check more?  My Dr. thinks it will be negative.  Fingers crossed!

  • Annette47
    Annette47 Member Posts: 957
    edited March 2014

    The number of nodes taken depends on your anatomy ... this idea behind a sentinel node is that it is the first node that any cancerous cells would drain to, so if that is clear, then the likelihood of any cells having escaped is incredibly low.    To test it, they inject a radioactive dye into your breast near the tumor (or sometimes around the nipple), with the idea being that the first node to get hit with the dye will "light up".   If only one node "lights up" with the radioactive dye, then that is all that needs to be taken.   In some cases, more than one lights up so they don't know which one is the "sentinel" one, or they are too entangled to tease apart and are removed in a cluster.    I had 3 taken (they all "lit up"), but my mother (who had a mastectomy) only had one as that was all that lit up for her.

    Sure hope that node is negative for you!

  • motherofone
    motherofone Member Posts: 62
    edited March 2014

    Thank you Annette. That answers my question perfectly.  Great blend of what my doctor said and questions I had later.  My radioactive dye was injected near my nipple.  She said it was terribly uncomfortable with a burning sensation so it was done while I was totally out.  I did "feel" the burning after the surgery and that was on pain meds, so I'm so glad I wasn't awake when it was injected. One question I did ask her was, where would the cancer go now, should it return since the sentinel is gone?  She explained that a new node would become the first recipient.  Like a new sentinel node steps up to the plate.  Is that your understanding?

  • Annette47
    Annette47 Member Posts: 957
    edited March 2014

    Yes, that's my understanding ... one way to think about it is as a chain (although that's not completely accurate as they do eventually branch, but it works for this).  If you remove the first link, then the next link become the first link.

  • lcinsetn
    lcinsetn Member Posts: 14
    edited March 2014

    Thank you all so much for the input.  I appreciate it so much.  I grieved over this all day.  

    I'd set myself a deadline of 2:00 so they could get it all set up, and ended up texting the Dr. about 1:30.  He called in less than 30 minutes and we talked a bit.  His thinking is that the nodes are pristine and undisturbed and it's easier to get to them at this point.  He also says although he would like to totally trust the tests we've done, he only really trusts the microscope.   There was more, but I'm tired of thinking about it!

    So I decided to just go for it and get it done.  It just seems like a good idea.  I told my husband that I'd probably not be happy no matter what I did, but I feel at peace about it.  

    Thanks again for you help and insight.

    LC

  • Mayanne
    Mayanne Member Posts: 108
    edited March 2014

    Good luck on Monday, Lc! I'll be thinking of you and please come back and let us know how you are. 

    I think that this discussion of lymph nodes may have solved a mystery to me of my mother's experience with cancer in 1978.  I have her journal that she kept while at the hospital before and after her surgery.  She went into surgery not knowing for sure whether she'd wake up having had a mastectomy.  Evidently, that's how they did things then - would check pathology and if the lump turned out to be invasive, they'd perform mastectomy and remove lymph nodes.  My mother had 12 nodes taken and was told later that 3 out of 12 had cancer cells.  There was some discussion with the tumor board as to whether she'd have radiation and chemo, radiation alone or nothing at all. One doctor voted for no treatment, but he was outvoted by the others who thought she should have radiation.

    It was decided that she have five weeks of radiation, and at about week 5 she was entered into a clinical trial involving the injection of dye into the remaining lymph nodes and then a few hours later (after she and my Dad went out for lunch), going for an x-ray. She was only the sixth person in the trial, and was nervous about it but was told that it would be beneficial. 

    I had always wondered why, if cancer had been detected in the nodes, that she wasn't given chemo in addition to the radiation.  But reading the above, I think that the trial must have been looking for the remaining nodes to "light up".  Perhaps if any had, she would have had another surgery and chemo added to her treatment.  I know that this possibility hadn't even been discussed with her.  After the procedure, she had another week added to her radiation treatments. And that was it.  I'm assuming now that nothing "lit up", so the doctors felt they had made the right call with surgery and treatment?  She was 60 then and lived for 33 more years! 

  • Mayanne
    Mayanne Member Posts: 108
    edited March 2014

    I just wanted to add that I asked my RO about this question - why my mother wouldn't have been given chemo when there was cancer in her lymph nodes, and he said that the chemo available in those days was not what it is today.  Perhaps the board believed, based on the results of the test, that the benefit of the available chemo was not worth the risk in her particular case.  It's certainly not the treatment that would have been given today. 

  • lcinsetn
    lcinsetn Member Posts: 14
    edited March 2014

    Mayanne, my mom also had cancer in the 70's.  She, too, didn't know what they would do, and kept telling us " they took it off" when she came out.  She had a malignancy under the lump that she felt.  It was on the chest wall.  They took all her muscles, scraped her chest wall, and took all her lymph nodes.  She suffered from terrible lymphedema and cellulitis  her whole life.  I believe her nodes were clear  but she still had weeks of radiatiion.  She was 56 and lived to 88, so it worked out ok, I guess.  Things have changed so much.  

    I will try to check in at some point next week.  Seems unbelievable that this is happening.  

    Lois in TN

  • Mayanne
    Mayanne Member Posts: 108
    edited March 2014

    Hi again, Lois,

    My mother also suffered from lymphedema for the rest of her life.  

    I'll be so happy for you when Monday is over.  Praying for pure DCIS, no surprises and clear margins.

  • have2laugh
    have2laugh Member Posts: 132
    edited March 2014

    Lois-

      Just wanted to wish you good luck on Monday.  I had surgery a few weeks ago for DCIS and also had sentinel node testing done. It sounds like you have a good rapport with your surgeon and that is so important. He has the benefit of looking at all the standards for treatment plus the advantage of knowing your unique situation and history. In my case my surgeon recommended this due to family history, I have two sisters who had invasive ductal carcinoma in mid 40's and I was 43 at surgery. I talked to my sisters but also several good friends who work in different types of therapies with lymphedema patients but also knew the risk is low with this type of removal versus more radical techniques. My surgeon normally wouldn't do with every patient but felt like in my situation it was a good idea to guide care.

      I had my sentinel node testing and wire placement done at an outpatient facility in the morning and then went to hospital for surgery-got to love insurance companies and I am an RN in this hospital! Not sure if that is the case for you- I hope not- but if it is, I have to tell you it was a piece of cake and I was more nervous about this than surgery. Sentinel node study was just pinch and slight burn followed by scans. Totally awake no sedation and it was fine. Wire placement-my DCIS was not visible or palpable-just caught on baseline (1st) MRI so clips were placed with MRI biopsy and they basically place a wire to  the spot clip is in so surgeon goes to the right area. Not everyone needs this but if you do this wasn't bad either. Basically lay on stomach like MRI and have a few lidocaine injections to numb and it was over before I even knew it started. (I am not superwoman and found the MRI biopsy pretty uncomfortable so after that every thing has been uphill.) Couple of gentle mammograms shots to confirm placement and wire just covered with gauze and taped to chest. My husband and I laughed when I came out because I had visions of having to get into the car and having some long wire out an open window but in reality just couple inches long. I had surgery like 3 hours later and was completely comfortable in waiting room.  I told my surgeon if surgery was as easy as first two things we would be good.

     Long story short, I ended up with two lymph nodes removed during surgery and very happy they were negative. Yes, it was sore afterwards-more than lumpectomy site- but what helped me was sleeping with a small pillow-a decorative one from comforter set-under my arm. Made a big difference. You also have to remember in the OR they place us with arms kind of up and over head at times so some discomfort post op can be from that as well. I had fair amount bruising in arm pit. Ultimately knowing those nodes were negative helped me and my surgeon decide on next step when 4 of 6 margins were still positive in pathology report. I opted for second more involved but still breast conserving surgery one week after first surgery. Nothing invasive and nodes being negative makes me feel more confident in decision.

    I wish you luck and want to add, I just returned to work this Wednesday night-three weeks from first surgery. I work in a neonatal intensive care so I was lifting little babies during night and really felt good. No issues with arm pit or arm now just a little sore at incision from last surgery. My advice- really take it easy after surgery and follow rules for lifting-only time I was really uncomfortable was lifting my little one too early. Try the pillow under your arm-my husband's idea and it really helped. Sorry this is so long but thought it might help the hear a recent experience with this. I will think of you and your family Monday.

     


  • lcinsetn
    lcinsetn Member Posts: 14
    edited March 2014

    Thank you, have2laugh, for your note.  It is very comforting.  I had sedation during the MRI guided biopsy and it was a breeze.  I'd have probably jumped and run if I hadn't been sedated.   Bless your heart.

     I have to be at the office for the wire at 9:30.  Then to another department for sentinel node injections, then an outpatient facility within the hospital for surgery at 1:00. The nurse said the outpatient facility got you in and out more quickly so I went with that.   I think my biggest worry is nothing to drink for that long.   They said they would give me sedation for sentinel node injections.  Isn't it odd how different places do things so differently. I wish I'd had sedation for the mammogram guided biopsy just because I have arthritis in my neck, and I thought my head was going to fall off.  It hurt so bad!  The biopsy itself wasn't all that bad, but oh my neck!!

    I also have family history of breast cancer, but my genetic testing came back negative.  It sounds like you didn't have radiation.  My surgeon said we'd talk about that when the tests come back.

    Thanks, again.

    Lois

  • have2laugh
    have2laugh Member Posts: 132
    edited March 2014

    Lois-

    Glad to reassure you. Our experiences can be a little different but I think the caveat is finding a team to care for you that you trust, respects your decision, are open to any (sometimes many) questions we may have. My surgeon has been open to second opinions or going to teaching facility if that is what I chose at any point. That means a lot. It sounds like everything located close together in your area so you should do well. I was next door to hospital I work at but had surgery in main campus downtown. It was kind of a long day and yes, I was hungry by surgery time. Started first procedure at 10am and surgery at 330 pm. Not sure it made any difference but I was worried about being thirsty and knew I had afternoon OR time so I drank couple bottles of water between 930 and 11pm night before w little light snack. I didn't find myself thirsty though I did envy my husband's coffee. One other thing if you are prone to nausea with medications please let the anesthesiologist know. They can pick certain medications, premedicate you, or give you something in postop. I even got patch preop which I left on couple days after both surgeries, helped with nausea for couple days pain meds and I had general anesthesia both times.

    Thank you for the advice on something for sedation with MRI biopsy. I didn't have anything before first MRI and struggled with feeling claustrophobic. I am a light weight with any pain medication and I have never taken  Xanax or Valium so I just went for it. After the first MRI I told the tech- Ok, I am never having this test again, little did I know! Couple months later I have had MRI biopsy once, second aborted MRI biopsy on opposite breast but will have follow up MRI for that in three months. I do try to just relax and take my self somewhere else in my mind. It does help but I think maybe I will try something to take the edge off and get a ride. I am having radiation for 6 weeks starting 4/7. Waiting a little over three weeks since last surgery to heal a bit more. Good luck Monday!

    Megan


  • motherofone
    motherofone Member Posts: 62
    edited March 2014

    It is amazing to me how different teams handle things.  I never had the wire.  My doctor used a radioactive seed which was put in the day before the surgery and was hidden in the breast.  No wire or anything coming out at all.  The "seed" was placed under a local while I was in the mammogram.  It was not really painful, just lots of pressure, but I did start to pass out.  Perhaps nerves?  I never had an MRI biopsy, but did have a Stereotactic Biopsy which was awkward, but not really painful.  During the Stereotactic Biopsy a marker was placed.  I was also sound asleep when the dye was put in my breast for my SN location.  I'm thrilled that I was not awake for that.  My doctor said it burns a great deal.  

    I really appreciate reading all of your stories.  It is especially interesting taking a peek into your mom's journal, Mayanne. Thank you so much for sharing.  If they could eliminate this awful monster in the 70's with much more primitive treatment, it really gives up hope for today! 

  • Mayanne
    Mayanne Member Posts: 108
    edited March 2014

    What a good way to think of it, motherofone.  My mother's little journal rode in my purse for each day of my treatment.  I almost felt I had her with me.

  • have2laugh
    have2laugh Member Posts: 132
    edited March 2014

     Just want to add, I appreciate you all sharing your experiences, too. We all come here looking for something  and a week ago I was quite discouraged. I really wanted to hear from other women in my shoes. I completely embrace evidenced based studies/practices at work but here I like to just be a woman going through the same thing and hearing your stories helps me. I am the mother of two girls and the youngest of five girls, three of use with stage 0-stage 2 breast cancer, all BRCA negative. I have learned a lot about other genetic links here. My surgeon is very optimistic we will see major advances in genetic studies in the next 10 years and hopes our next generation of girls will have some type treatment options to prevent the damage in DNA that leads to cancer. I hope that day comes and future generations won't need to go through any of this!

  • Rubiayat
    Rubiayat Member Posts: 144
    edited March 2014

    Good luck tomorrow Lois! I will be thinking healing thoughts for you:)

    With my lumpectomy and SNB I asked for a spinal block and a sediative rather than general anesthesia. I believe this helped with recovery. The anethesiologist thought it was a good idea and that it may be a better option for lumpectomies.

  • Rubiayat
    Rubiayat Member Posts: 144
    edited March 2014

    Good luck tomorrow Lois! I will be thinking healing thoughts for you:)

    With my lumpectomy and SNB I asked for a spinal block and a sediative rather than general anesthesia. I believe this helped with recovery. The anethesiologist thought it was a good idea and that it may be a better option for lumpectomies.

  • lcinsetn
    lcinsetn Member Posts: 14
    edited April 2014

    Well, things went OK, I guess.  Had wire put in.  Not bad.  Had 4 shots  for radiation.  2 hurt like crazy but it was short.  Surgery was about 1:30 and I got to go home about 5:30.  Husband believes he said he just took 1 lymph node.  Today I've hurt off and on.  Getting ready to take a pain pill and hit the bed.  Thanks for your support.

  • have2laugh
    have2laugh Member Posts: 132
    edited April 2014

    Wishing you good results and quick recovery. Rest upSmile

  • lcinsetn
    lcinsetn Member Posts: 14
    edited April 2014

    Got the word this morning.  Clean margins and clean lymph nodes.  I go Tuesday for a post-op check and treatment plan.  I've been doing too much and ended up crashing yesterday.  I think any kind of bending pulls and cause pain.

    Thanks for the good wishes!
    Lois

  • faerywings
    faerywings Member Posts: 173
    edited April 2014

    awesome news Lois!!

  • motherofone
    motherofone Member Posts: 62
    edited April 2014

    Lois!  Yipee!  Great news, now time to heal!

  • audikos
    audikos Member Posts: 11
    edited April 2014
  • Mayanne
    Mayanne Member Posts: 108
    edited April 2014

    Lois, I'm so happy and relieved for you!

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