Poll on Sentinel Node Biopsy Pain

I had sentinel node biopsy on Dec 2nd.  I received a perscription for a numbing cream (prilocaine-lidocaine) that I applied an hour before I left for the hospital.  I used 1/2 the tube and would have used it all if I could have figured out how to get it all on there, then covered it with saran wrap.  I felt a little bit of a burn sensation for the injections, but not even what I would consider anything more than a 1 on a scale of 1 to 10.  I think the cream really works from listening to the pain others had.  I only had the radioactive stuff not the blue dye.  It's been 6 days now and I still wake up at night from doing something with my arm that hurts.  I'm down to just Tylenol for pain since I hate the way the pain pills make me feel.  If there is a reason that injecting pain medicine with the dye could cause the procedure not to work correctly, then the numbing cream seems to be great alternative.  I was concerned that it wouldn't work since it was just applied to my skin but I really felt very little pain.

I really have to say I don't know what they did at my hospital, but I hardly felt

anything with either the nuclear stuff or the dye injections..

I probably shouldn't have read all this before my procedure.  I am having the injection Tuesday and SNB on Wednesday. I will be sure to get some Cream.

I feel sorry for you lumpectomy gals and your SNB pain. When I went in for my mx they just knocked me out for that and then did the SNB and mx together. I don't remember a thing. It sure hurt a lot afterwards. I guess it is better than having the full dissection though.

There is an article in Cure magazine about doing less surgery, expecially the axillary nodes not needing to be taken in many cases.  I was told after surgery and the three nodes were negative.  Then when I went back for a followup appointment, the surgeon ripped on the plastic film over the incision and said, "I need to talk to you about your path report, there is a problem."  I thought, what problem, you told me I was node negative.  He said that one node was positive and now I needed to go back for an axillary dissection and then I'd need chemo.  I just froze and keep repeating, "No more surgery and NO chemo!"  He tried the tatic of saying I was risking my life if I didn't allow him to cut me up further.  I said he and his nurses did NOT control the horrible pain I felt after the lumpectomy and SNB, what should I believe this would be any better.  He didn't care how scared I was, he just said that was what needed to be done.  I am a Med Tech, who worked in Veterinary Pathology.  I knew that the mets were not in the whole node if they didn't see it on the section during surgery.  I insisted that I know the size of what the pathologist saw, which was actually <2mm, thanks to Dr. Susan Love's book.  I said that I knew there were studies being done at that time, showing that it may be safe to leave one node that only has a micromets in it and not do an axillary dissection.  I said it was my body and I was not going to have any more surgery and certainly not the poison of chemo.  Then he told me that I was killing myself by not agreeing to the proper treatment.  I asked him it is was going to be sitting me with when I felt bad and couldn't eat, because all I have is my husband with a full time job.  I can't count on support from anyone most of the day.  I was not going to face what I know chemo does to you, with no support in a new place, far from any of my family or friends.  Guess what, two years later, the studies that I found now have even more support.  The trend is slowly switching to leaving the rest of the nodes, if they just find one that has some abnormalities.  They are finding the recurrence is about the same and the quality of life is certainly better.  Though I'm not enrolled in any study, I feel justified that I fought the Stand of Care/ cut, poison, and burn and I'm still here 2 years later.  I know there are notes in my files that I am a problem patient becuase I question everything,  I don't care, when I catch them in lies, it is hard to trust any of them again. - Kay

Bump

I took the four nuclear injections "straight".  I've observed many of these studies from the other side as a Nuclear Medicine Tech.  At the facility where I worked the routine was to give a numbing injection first and I witnessed a great range of reactions to that, from nary a flinch to screaming and crying.  I figured if it's going to sting anyway I'd rather take fewer needles and that worked fine for me.  I had my procedure in a different city so didn't know any of the people that worked on me there.  The Nuc. Med. doc did a great job of telling me exactly what he was doing and when.  Each shot was a bit painful, like a hornet sting, but lasted just a few seconds and was over.  I wouldn't go out of my way to go through the experience again  but would be OK doing it the same way.  People definitely have different pain thresholds so I understand that what was tolerable for me might not be for someone else. 

The sentinel node localization can be done with a nuclear tracer and/or with blue dye.  Many surgeons do both (as mine did).  The blue dye is pretty straghtforward and is typically done by the surgeon once the patient is anesthetized. 

The nuclear tracer can take a while to move through the lymph system so it is usually injected 3-4 hours prior to surgery or the afternoon before.  Different techniques are used at different facilities.  Sometimes scans are done in the nuclear medicine department after the tracer injection - mine was done as an outpatient the afternoon before surgery - and the nuclear medicine doctor marks the skin where the first node lights up.  Sometimes it moves along very quickly and sometimes it takes hours before the first node lights up.  That is why it is usually done hours before or the day before surgery; otherwise the surgery start time can be delayed. 

Images are sometimes also taken and passed along to the surgeon.  In any case, a small radiation detection probe is used in surgery to find the node.  If a scan and skin markings have been done it gives the surgeon a starting point.

Again, there are different ways to get the job done.  Each facility has a technique that works best for its surgeons and nuclear medicine department.

This thread has been interesting reading.  I had a mastectomy with immediate TUG reconstruction inner thigh flap) 2 1/2 weeks ago.  The injections for the SNB were given to me the morning of the surgery.  I asked about a numbing agent but they said that it would affect the uptake of the stuff.  I didn't realize that there was a distinction between a tracer and a dye and so I did not ask exactly what I was being given.  I had been warned by another woman that it would burn a lot.  I had had 3 lidocaine injections with my earlier lumpectomy, and they were bad enough.  But with this, they said normally they give 2 injections:  one into the nipple, and another I think she said for the skin (although I'm not sure I got that right) that would hurt more.  She said in my case, since there was a void behind the nipple from my lumpectomy, they were going to have to give me 5 shots: 4 around the nipple, and then the skin shot.  

I told her that I get lightheaded and see spots when I get injections, and I did not want to see any needles.  I made them take off my glasses.  Then one asked the other, what size needle?  and the other said, "2 inches."  LIke I needed to hear THAT.  They were very sympathetic, but it hurt like nothing I've ever felt in my life--and that last one definitely hurt more than the first four.  Granted, I've never given birth or broken any bones, but I was crying and whimpering more and more with each shot.  It was absolutely by far the worst part of this whole endeavor, and later I told the doctors and nurses so.  

After the surgery, I used my pain pump maybe every 3 or 4 hours (instead of the 8 min. allowable).  I'm not sure I even needed it at all, but they told me it was important to "stay ahead of the pain."  By day 3, they had removed that and switched me to Vicodin.  I only had 1 every 4 hours at first, and then every 6.  By the time I went home on day 5, I was taking a half every 6.  I'm not sure I needed any of it.  The point of all that is that I don't think I'm really a wimp when it comes to pain, but my word, those injections were like nothing I'd ever felt, and God forbid if I were ever to need it again, I would sure as heck insist that something be done differently. 

I am very glad to hear, though, that this is not the case for many women.  How on earth can the pain associated with this experience vary so widely?  Can't these "perpetrators" take some initiative and try to identify best practices for administering this stuff?  Or ask patients to rate their pain afterward and track this, along with factors like breast size, density, location of injection, needle size, speed of injection, use of numbing agent, etc. to please, please, please try to find a better way to do this???  I know they have a thankless task with this procedure and they aren't TRYING to hurt us, but surely there is more that they can do.

The assisting nurse did massage the area after each injection, and that did seem to help.  Plus once they were done, the sensation wasn't so bad (compared to the injections themselves).  So for anyone about to undergo this, I hope your experience isn't so bad, and be sure to ask them to massage it.   

My doctor did a lidocaine shot (I had lidocaine shots prior to this with mole removal so I knew what it felt like), didn't hurt at all. Just a quick sting.  Then 4 of the nuclear shots, and I felt nothing. Doctor said if those did not show up, he would inject the blue dye but that would be done after I was already under.  I had time before the rest of the pre-op, so my husband and I went for a walk. I had read on another post here on the subject that they were told movement helped get the injection into the nodes. I had 5 nodes show up.

Oh gosh, I am scheduled for my mastectomy on Monday, and I just can't believe the differences in the experiences of everyone who posted.  They can cut off my breast or anything else they want as long as I'm asleep, but I am just so terrified of needles and pain.  My doctor said I wouldn't feel anything but maybe he meant the actual biopsy and not the dye injections?  Does it depend on the doctor or the hospital?  If anyone has any experience with how they do it at UPENN, please write. 

This has been an educational thread even though I'm 1.5 years post snb. I was very against general anaesthesia going into my lumpectomy surgery (wanted just a local) and when the final pathology report on my lump. surgery came back with a small amount of idc (no previous indication of it from previous biopsy, mammo., or mri) I again had to go under general. I really  really wanted to avoid it again, but bs was adament that that was how he did it and I just did what he told me to do.

My entire snb procedure was < 3 hours so I must have only had the same-day dye injection procedure, I was out cold and have/had no idea what went on. Now I'm feeling better that I was out cold even though I wasn't given the choice, because I wouldn't want to remember the prep. stuff or the pain. I have a high tolerance for pain but yikes, I found the recovery painful enough that I did fill the prescrip. for tylenol with codeine, something I didn't do after lump.

Good luck to you all, and believe me, it gets better.

Allenan:  Don't laugh too hard or you'll pop your incision

Hi everyone,

First, my experience with the radioactive tracer injection was extremely stressful, but not painful. I had a unilateral mastectomy with Sentinel Node Biopsy on May 26th at Vanderbilt (are we supposed to say hospital names here? seems important to me). Like so many of you here, I did a lot of research beforehand and got myself into quite a panic. Since having the procedure, I wanted to add my two cents to the discussion for others who are looking for information. There are actions you can take that should at least help you feel more in control and prepared, regardless of your reaction/experience.

First suggestion - talk to your doctor or their nurse (I called the nurse practitioner) and make sure you find out exactly what they are going to do, when, and what they are willing to do to alleviate your pain. Don't be afraid to ask questions and insist that your concerns be taken seriously. Each place seems to have its own procedures and protocols - better to know and do everything you can in advance, at least in my experience, than to wonder about it and be surprised. If you are reading this, you probably already feel this way.

A few questions to ask: 1. What type(s) of injection(s) will I have prior to the surgery? There is the radioactive tracer and there is blue dye. Not everyone gives both or at the same time. 2. How far in advance will I get the injection(s)? Some do this the day before, some only a few hours. 3. How many injections will there be and where will they be given? There is a range here - sometimes 3, up to 6, injections. Sometimes in the nipple/areola, sometimes other locations. 4. Will they use a small needle? Some use a needle as small as that used for TB tests. 5. What can you do to alleviate my anxiety and/or pain? Ask about Valium, EMLA (llidocaine cream), and lidocaine injections. Take whatever they offer, if it makes you more comfortable. Get prescriptions ahead of time - EMLA takes time to work so it can be worth it to get it and apply a couple of hours in advance.

My experience: I called the nurse practitioner in a panic after reading the horror stories. She did not know a lot, but called the nuclear medicine department to find the answers to my questions and reported back to me. She even sent them the link I had found to the study about including lidocaine in the injections. She said I would be getting three injections of the radioactive tracer in the upper section of my areola - closest to the tumor area. This would happen two hours prior to surgery. The blue dye would be injected later while I was under general anesthesia. They were unwilling to give a lidocaine injection or to include lidocaine with the tracer material - they had other studies that show lidocaine will slow the tracer. However, they were ok with me using EMLA cream, which was prescribed ahead of time. She also said they would provide a prescription for Valium.

Day of surgery - I actually took 1 1/2 valiums, although only 1 was prescribed (don't tell my doctor :-) before I went in. I also applied a LOT of EMLA cream all over my nipple, areola, and surrounding breast tissue, so it had plenty of time to sink in. About 20 minutes before the tracer injection, I put on my headphones and listened to really relaxing music and kind of meditated. I got very relaxed, but my heart rate still spiked when I was wheeled to Nuclear Medicine.  

The nurse that greeted me was extremely upbeat and cheerful - she asked if I knew what they were going to do. I told her I knew too much, that I had been reading online, that I had asked for lidocaine injections and was denied, that I was terrified, and to please be nice to me. I think she was surprised by all that! She said there were studies that said lidocaine slowed down the tracer - I replied that I had also seen studies that showed that was not true. At that point, she left to get the doctor! The doctor came in and asked how I was doing. I said I was terrified. He said, I know. He was very kind, really. He explained that they would do three injections, that the needle was very small, that this would hurt, but that each person reacts differently. He said they would let me know exactly what they were doing and would go at my pace. Before each injection, he asked if they could proceed.  

I don't know if it was the EMLA or something about my breast or body chemistry or what, but I did not even feel the first two injections. The last one stung a bit but that was it. I was so relieved. I know that is not everyone's experience, and I'm so sorry about that. But I think it is important to know it is sometimes not bad at all. When she wheeled me out, the nurse said, joking, don't ever read anything on the internet ever again! I laughed, but I do believe it is better to be prepared and have an opportunity to have a better experience.  

I have to admit - I wish I could have avoided all of the fear and panic. At the same time, I was so proud of myself for standing up for myself, asking questions, asking that a major teaching hospital examine their protocols, and learning how to be my own best advocate. I know that I want to be an informed patient and I learned how important patient education can be. I also learned that while I trust my doctors in so many respects - they really are great - they are human and are not going to be able to know everything I need. They are getting to know me and I have to tell them that I want information, that I want some control over my care, that I will get anxious and need help/reassurance, too!  

Sorry this has been so long, but this was such a big deal for me. I think it is partly a deflection of the anxiety, fear, sadness, anger, etc. about getting a cancer diagnosis and losing a breast. Those things are so big that sometimes we need to just focus on something smaller that we can control. It doesn't matter, though. What is important at the time is what is important at the time. Take yourself seriously, whatever the concerns are.  

Best wishes to you all- Ann

• Hi everyone!

 Although it was for a malignant melanoma (a mole on my back that had changed dramatically in appearance) and not breast cancer, I had a SNB after the mole results came back malignant.

Later, on the day of surgery and SNB,  I had four of the dye injections in preparation for the radiology photos, and I was  wide awake with just a litle numbing solution. The person that gave me the four injections was very quick and professional. It went very fast. Compared to the large shot I'd had two weeks before (when they originally removed the mole in the doctor's office) this was much easier indeed. 

 I had worried about this beforehand for weeks, but for me, it really was not bad at all. I had to be face down while they did this on my back (where the malignant mole had already been removed.) So I simply told the nurse and doctor that I was going to count to ten. The four shots were done very quickly and only once did I count to thirteen!

Each person's experience is unique, so I understand that. For me, the healing time for the node samples taken under the arm is the challenge. I am still very tender there after exactly two weeks, but the surgeon said I am fine. The excision on my back (around where the mole had been) was deep and is taking quite a bit of time to heal. I had one original skin graft and when I had my follow up visit ten days after surgery, a painless, second graft was applied. My surgeon is the best. I trust him completely and he is very gentle. It was tough going those first ten days after surgery but now the pain is not so bad.

 Some people hearl a bit more slowly than others. The hardest part besides healing was actually lying on the radiation room table for two hours and fifteen minutes, since I have disc problems in my neck and i was very uncomfortable not to be able to move.

One thing I wish: that the nurse I saw earlier had not put in my IV so soon, as it was hard enough to be on the table that long, and the added discomfort from the IV was not necessary. They could have started the IV after the radiation "photos" were taken. The fluid also caused me to keep having to go to the restroom, and during the two hours and fifteen minutes, I was not able to do this so it was hard to fight with that sensation.

Also, the nurse, in my opinion, didn't do a good job of the IV. It hurt for ten days afterward. In all, I was very grateful that all the lynph nodes checked out free and clear, nothing has spread and I am now a melanoma survivor. I now have the greatest respect and compassion for all people dealing with any kind of cancer. I hope everyone will do breast self exams, check for moles, go to their annual physicals and always talk to their doctors if anything is suspicous, be it a mole or a lump, just speak up and let the professional do their jobs.

Blessings to everyone here.