Poll on Sentinel Node Biopsy Pain

ShaneOak - I don't think at all that you sound like a baby.  I looked at your diagnosis date and I know that things are moving fast for you.  For me, I was diagnosed and didn't have my BMX until two months later.  I had a little time to research and absorb and come to terms a bit with everything.  I wanted it to happen faster, but in retrospect I'm happy I had some time to gather myself a bit. 

I don't mean to sound callous, but there's nothing fair at all about any of this.  It sucks, sucks, sucks, but you have to find a way to push your way through.  It doesn't make good sense to refuse something essential to your treatment plan because you're tired or afraid.  Sorry, I'm being a big nagging sister here.  There were so many days when I said to my husband, "I don't want to do this" and he would say, "But you have to".  It became our little ritual and eventually it made me smile (a little).  Fairness has nothing to do with anything here....did I say that it sucks?  Nobody is going out their way to slip in one more horrible procedure on you.  I know it's hard to believe right now, but sentinel node mapping is a great advancement.  It might not be perfect, but it really truly is important to your dianosis.  Believe me, you will have enough doubts and questions and fears along the way.  It is so important to get the pathology and diagnosis correct as it affects everything down the road. 

Sorry, just trying to encourage you to let your surgeon do the best job possible for you! 

juliaana - Thanks for jumping in.  It seemed like an option, especially if someone is considering refusing the test.  I just hadn't read of anyone who had gone that route.  How did you do???

ShaneOak,

I tried to refuse the SNB because I got so psyched out from reading about other people's experiences. I even offered to not have a lumpectomy and have the breast removed if that would illiminate the need for the shot.  My surgeon told me no, you would still need the SNB and that I had to have it done to be sure that the cancer had not spread. 

The nurse gave me lidocaine spray and had me wait for about 30 minutes for it to numb. By the time it registered as "oh crap, this hurts!" it was already over. Very quick and very doable.  And by very quick I mean it was over before the count of 3.

In my opinion, the biopsy hurt more than the shots.  Reading about how much it would hurt and how barbaric it was got me so wound up and scared but for me it was not as bad as some of the women experienced.  Everyone is different and I hope that it isn't painful for you.   Wishing you the best.

Shane - the only way your BS can identify the Sentinel Node is for it to "light up" during surgery.

The Sentinel Node is the lymph node that is the first in line to filter material from the breast. It sort of "stands guard" for the rest of the lymph nodes, and anything that spreads to the lymph system (theoretically) has to pass through the SNB.

Once you are in surgery, all lymph nodes look alike. So a few hours prior, you are given an injection of radioactive isotope material into your breast. As you wait for your surgery, the material slowly moves into the lymph system by way of the Sentinel Node.

As you are asleep on the table, and during the MX surgery, the BS will take a small geiger-counter like tool, and search out where the "hot" nodes are. Whatever "lights up" (makes the tool react to the radioactive material) will be the Sentinel Node. A few other nodes may react, too, and those may be removed as well.

If you don't get the radioactive isotope shot, there is another shot you can get using blue dye. That, I understand, may be given while you are under. However, I didn't have that, and don't know if it is a substitute for the radioactive isotope injection.

My experience with the radioactive isotope injection was not like those described above. I had worried myself sick over reading so many horror stories here. I asked about numbing agents and I was told that they didn't use them.

The Radiologist and Technician couldn't have been more kind. The Radiologist kept apologizing, and the Tech held my hand and kept talking to me.

I am a TOTAL weenie when it comes to pain, and believe me, I would tell you if it was bad.

But my pain rating scale changed when I had a cortisone injection right into the bottom of my heel last year. I thought I could take it and I couldn't. I was weeping and sobbing and screaming for the doctor to stop. He didn't. (Luckily, he knows me well, and I love him, otherwise I would have killed him.)

My point is, I was expecting the absolute worst when I had that shot in my breast, and it wasn't. The ladies are right...not everyone has that kind of experience. This is not to minimize their pain...I've had great pain during some things where others said it was no big deal. I just didn't have a horrific experience getting that injection.

TinaT, I did just fine with the injection because I received IV sedation.  My BS had experienced the SNB/injection and found it to be quite painful.  She vowed that none of her patients would have to worry about or go through the pain so she orders the sedation.  It was great to have a BS who knew first-hand about the SNB and lumpectomy.

Oh and I also sent copies of the studies to the bs, np, and nuke med dept. Progress is slow sometimes but momentum is growing and sometimes just one voice can make it better for others.

Hello Shane Oak

I'm one the people who don't post re the sentinel node biopsy because it was a walk in the park.

It's just like having a normal injection.

I had two injections and was in and out within seconds - no spray or lidocaine.

Lay down on the table, relax, close your eyes and you will be out in a flash.

It's a lot less painful than a bee sting!

Good luck and best wishes

Alice

ShaneOak, I hope the reassuring responses you've received here have helped. I just had my SNB with lumpectomy last Wednesday, and the shot for the SNB was a walk in the park. The flu shots I had the previous week were far worse. Having said that, I'm a big fan of self-advocacy. If you are feeling like you can't take facing one more fear right now -- you've had plenty to face already! -- say so. Push your care team to take good care of you. Feeling like you can trust them to look out for your wellbeing NOW as well as later will give you peace of mind, and I'm sure we could all use a healthy dose of that. Hang in there.

Jan - I wish you all the best and I hope things go smoothly for you!

SherlylB, I wanted to ask you how long your swelling pain lasted after Lumpectomy.  I too had the same procedure and we have the same diagnosis.  I know we have chatted but my breast is still swollen and painful.  Hard to sleep at night and my surgery was on Dec.6. Thanks.

Okay, so now that it's over I have to say it was not a big deal at all. The stress of this all made me feel like it would be worse than I thought. It was super quick too!

I am so glad I kept reading Shane Oak, got to the end of this thread, and you'd had the procedure with no problems Yay!

I was going to say that I was terrified before mine too, but it was a non event. No pain at all. I was so relieved that everything else just fell into place and my surgery was over before I knew it. I am 10days post op now and doing great.

To everyone about to face the SNB, the fear is far, far worse than the procedure!

I am so terribly sorry Barbara that you had such a bad experience with the procedure and the anaesthesia etc, that must have been awful.

My point for sharing my experiences was simply to let others know that this doesn't have to be a horrendous experience for everyone. I had several people share their horror stories with me, I still don't know why they felt the need to go there before I went in for my surgery but they did it anyway. My surgeon had tried to reassure me that this would not be a bad experience too, but I couldn't shake the fear.

I arrived at the Hospital for my early morning appointment in Nuclear Medicine prior to my Mx surgery in a state of terror after a sleepless night alone in a Motel. I elected to stay close to the Hospital because it would have been a long drive very early in the morning from the regional area where I live. The young man who did my tracer procedure was wonderful. He had done hundreds of them and talked me through the whole thing. I had no numbing or anaesthesia either.

As you said Barbara, this is a test that is necessary and the experience will not be the same for everyone, but in my humble opinion going into any major surgery in such a state of fear is just wrong and serves no purpose.   

I went into my SNB trusting my doctor had given me pain meds to dull the pain and also trusting the nuclear medicine technician was capable to quickly doing the procedure.  I had already had numerous biopsies and was always praised that I was such a calm and trusting patient. 

My procedure was barbaric.  I am filled with rage that I was given a stupid tiny Xanax to deal with the 4 horrific shots into my nipple.  I am thrilled that this is a no big deal event that amounts to a bee sting for some maybe even most.  But I still wake up in night sweats dealing with this event.  To the doctors and technicians who minimize the documented pain of many further makes us feel invalidated.  I would never ever tell a woman that her stereo biopsy would be painless.  I know I had a fantastic doctor who did it quickly and with great skill and who walked me through it.  She was amazing.  But my friend had a completely different experience.  I would never ever belittle her and think she is a complainer or wuss.  I wish she had my doctor. 

This thread should not scare women but empower them to demand a better experience.  It does not have to be a horrific experience for anyone and to imply that we should just not worry and trust blindly is not serving any of us.  All of us on this site have been through enough pain and suffering.  This procedure should never be a negative experience especially happening right before surgery. Ask people at your hospital their experiences.  I know now that my hospital needs to replace their tech in the nuclear medicine department with someone with empathy and skill.

Looks like no one has responded to this thread in quite a while but I was glad to find it. The injection of the radioactive isotopes 2 hrs before my double mastectomy was the worst part of the whole experience. Nothing hurt as bad. I have a HUGE pain tolerance and in fact am allergic to narcotics and opiates, so I cannot take anything more powerful than Tylenol. I had a lower body lift a few years ago with 58" of incisions and took tylenol once. Returned to work 4 days after surgery with drains hanging off me, but no pain. Uncomfortable, yes. Painful, no. I'm a fitness instructor and have blown out both meniscus, one hip, have had shoulder bursitis twice, and have an ACL tear. Again, tylenol once in awhile works fine. I had read that lots of docs use EMLA cream on the nipples prior to the procedure, but my surgeon said the radiology department didn't use it and the injection wasn't all that painful, no more than a bee sting. I believed him. If you have just the dye injected, apparently it isn't expecially painful. The radioactive isotopes are a different story. It hurts. A lot. Not for long, but you will cry.

Two radiologists did the procedure, one on each side. They told me it would hurt and it was best to get it over with by doing both sides at the same time. There were four injections, one on each side of each nipple, but doing it at the same time made it feel like only two. They counted down - 3,2,1 to make sure they were injecting the raioactive isotopes at the same time. Bee sting, my ass! More like about 100 bees stinging at the same time! I who never curse shouted "SHIT" at the top of my lungs as I tried to hold still. Tears sprang out. Unfortunately they had to do it again. Don't know where I got the courage to continue, knowing what was coming. The second time was worse, but the docs began to massage it right away afterwards and indeed the SHARP stinging began to go away. Took about 5 minutes before I could stop the tears and calm down...and I am NOT a crier! It was just so unexpected. I am the kind of person who doesn't even feel most paian and can deal with tough pain after a major surgery when I know it is coming. I don't like surprises. 

If you learn you will need a sentinel node biopsy, ask about EMLA cream. It is supposed to decrease the pain a bit, but since the isotopes are a different Ph than the rest of you, they hurt going in. They can't do it while you are under anesthetic because it takes a couple of hours to travel from your nipples to the lymph nodes.  

By the way, I had a stereotactic breast biopsy a couple weeks before the mastectomy. It was totally painless.