I am really, really concerned about these injections and the lies propagated about how they merely sting or are a little painful - especially from the so called medical professionals such as those in nuclear medicine who have sedation protocols that are mandatory when this procedure is done on a dog or cat but not on women - and I deeply resent with the suggestion that any women who find the procedure like being tortured are either weak, hysterical or has been suggested in some pain research - inadequately mothered.
I found the injection a form of torture. I lost control of my bladder and bowels. I went into shock. I shook violently for many hours up till my pre med for the lumpectomy was given, My body temperature dropped. I cpuld not get my head to work my limbs/ My body jerked so violently up off the table the therapist had to hold me in place so I didn't impale myself on the syringe. I was kicked in the chest my a horse once and the air was knocked out of me at a greater force than that. That was the only reason I could not scream - I had no air in my lungs to do so.
When I asked the Mengele wannbe who did this to me why I was not about the true pain levels she said "most women tolerate it" ie., I was weak and fell below their standard. When I asked why no local or pain relief was used she said my pain only lasted a few seconds and it would take up her time to draw u/apply sedation ie., when it comes to valuing things, a few minutes of her time is worth more than me being tortured, soiling myself and being put into shock = which , I note, I was not treated for.
If you research the literature, Kryzynski et al more than 10 years ago was telling Nuclear Medicine practitioners that sub aoreal [under nipple] radio tracer injections require sedation. Years ago Oncology nurses Fetzer and Holmes well documented the agony women who underwent this vividly recalled even years later.
If you do not get the true facts about the pain or your pain levels/tolerance is not assessed prior to this procedure and you are managed consistent with that, then I say sue them for assaulting and torturing you, false imprisonment if they held you down and inflict enough professional pain on them so they start taking this issue seriously. As you can tellm I am livid about this cruel and totally avoidable infliction of gross pain.
What you describe is certainly a VERY unusual reaction to anything I have ever heard before. There must be some type of allergy involved and you should definitely make this known in the future. Also remember that you are entitled to refuse any type of test or treatment at any time .... consent forms are usually signed and you need to be aware of what you are signing before any type of procedure. Regards ....
I am soo sorry you had to experience this agony, and I have heard others say the same thing as you, and that this injection is excruciating.
In my case I lucked out. My surgeon, right before the operation, asked me if I had the nuclear injection he ordered I have, I told him 'no', and that I was never told about anything like that, and to have, and that I did not. The surgeon in return acted really annoyed, but I think he was faking, and that he really did not want me to have the injection because it was so painful. That he had thought about it, and that it would have helped him, but that it was not worth subjecting me to the pain. he also told me how painful it was then. I will love him forever.
I really hear you,Coco, and I agree with you. I am sure nobody is warned about the pain ahead of time.
Hello and thank you for your comments, which have been kind. First things first - my reaction is not at all unusual. The agonizing pain levels associated with the radiotracer injections are extremely well known in nuclear medicine and even more so when subaroeal ie., under nipple injections are used. There is a SIGNIFICANT amount of legitimate scientific literature about this.
A Nuclear Medicine practitioner called Jesse Crowe and his colleagues McCuag from th Banner Baywood Medical Centre in Mesa Arizona were so alarmed at women being tortured by this they presented an abstract titled Pain Associated with injection of rasioisotope tracer for Sentinel Lymph Node Biopsy with or without AMLA cream" at 2009 Breast Cancer Symposium - see abstract 91. This is the largest and one of the most prestigious breast cancer research symposiums in the world. The notable pain levels are also referred to in Kumar et all Retrospective Analysis of SLNB in Journal of Nuclear Medicine 2003 64:38 pp 421-422; Tuttle et al 2002 Sub Areolar injection.." in Annals of Surgical Oncology 9 (1) pp77-81. I have a list growing daily about this topic including recent editions of The Lancet and New England Medical Journal.
I remain furious that the severe, agonizing effect of these sub-aoreal injections of radiotracers is so well know as to be a notorious fact in a significant percentage of women and no one in the Nuclear Medicine area is taking any leadership on this by insisting that Lymphoscintigraphy protocols be amended to ensure no practitioners are permitted to leave out pain assessment or pain management of patients as part and parcel of this procedure. As for informed consent being able to be withdrawn at any time - that is fine in theory. The problem is however a practical one - if the Nuclear technician lies to you and claims is will only be a stinging sensation akin to eg., a local anesthetic which I tolerate beautifully by the way, and the pain is mild and only lasts for 3 seconds, then you consent based on that. By the time you know they have lied through their teeth ie., only AFTER in the injection is given, you have already been profoundly hurt. Its too late to say no as its done. Also I now understand why injured wildlife have allowed me to pick them up and take them home even though they are wild animals. When one is in that much mobile and in that much shock, your mind ceases operating and you dumbly and meekly go where ever someone propels you. After that procedure I was offered a wheelchair as my legs were unable to cooperate with my brain [it was all mixed up] and my legs were actually walking me out of the hospital until a nursing assistant came and caught my arm and pulled me back .
I believe the ONLY way to stop women being tortured needlessly like this is to sue the Nuclear Medicince technician for assault and false imprisonment as well as torture related offences available under criminal assault statutes and/or civil suits against the Head of the Nuclear Medicine facility who permits the protocols allowing this torture and the medical facility in which this torture occurs.
They know about this problem - they read the medical journals and attend the breast cancer conferences reporting it as well as reporting on how to stop it and yet they choose not to act. I say sue the pants off them. If they will not act appropriately out of humanity then lets hit them in the wallet. Maybe that is the way to get their attention and fix this problem once and for all. They cannot be allowed to get away with hiding behind statements like "some women don't react like that" or "many women tolerate it well." As the Crowe article makes it clear, there appear to be groups of women who suffer agony so how about we start by ending their pain rather than lumping us into a category of weak or pathetic wusses who "can't take it" like other women? I am so over being patted on the back for "being brave" ie., putting up with pain I should not have to and being penalised for feeling pain.
In January of 2007, I had a bilateral mastectomy that was entirely prophylactic, because I have a BRCA mutation. I did not have a sentinel node biopsy, but while I was doing research before surgery, I found out about those injections and was HORRIFIED. I am a regular poster on a board with women who have a genetic breast/ovarian cancer risk (facingourrisk.org). When I started asking questions there, I learned that many of them had been subjected to similar torture.
I've often thought that if it had happened to me, I would have filed a lawsuit. Do you plan to do that?
And I agree with you about the lies. Everything you read that's supposed to help you prepare says something like, "You may feel a slight stinging sensation." Um, no, that's what you dab antiseptic on a cut.
The problem of zero pain relief for this injections appears to be the arrogant and I say criminally negligent attitude of the Nuclear Medicine establishment who pay no regard whatsoever to pain management in women. Therefore their so called Lympgoscintgraphy Protocols make NO provision for pain relief. It is to my mind therefore as women hating as other practices they condemn in the third world, such as female cliterodectomies. The western medical establishment condemn this as a barbaric practice on a number of grounds including failure to provide sedation or anesthetic, yet the same medical community sit idly by while we have our breasts tortured and the top of our heads blown off with indescribable pain [and our muscles where we are about to face surgery contract painfully and take months of physio to unlock] and end up with terrible morbidity from it while trying to battle breast cancer diagnosis etc - all because they cannot be bothered offering us effective, cheap and easily accessible pain relief.
For those of you a trifle confused about the pain issue associated with this and the variance in responses for women - please note the following - there are TWO methods commonly used to identify our lymph nodes.
Method 1 is a blue dye injected into the nipple which is so awfully painful I am only aware of it ever being done AFTER we are under the general anesthetic and on the operating table.
Method 2 is injection of a radio-colloid [in Australia and Japan antimony trisulphide in used - in the US two other items are used including an albuminoid - it appears the US ceased using antimony trisulphide for this procedure around the same time issues were raised about it being carcinogenic! I am heavily researching THAT issue as well by the way] into the breast . The injection site can be into the tumour itself, the skin, into the nipple or under the nipple etc. The in and under nipple injections especially in the upper quadrant appear to be most associated with agony and pain, although not exclusively so. It also appears women with better education, denser breast tissue,, a history of breast tenderness or pain, higher income and higher anxiety about surgery are more likely to experience the terrible agony. There are lots of possible explanations for this rough profile, which I will not go into here.
This second procedure is done most often in the Nuclear Medicine area and most often by a Nuclear Medicine technician - not by our surgeon.
After the radiocolloid injection sometimes the kinder ones give you a heated towel to place on your breast. They normally then ask you to self massage the breast. This assists move the radio-colloid substance through the breast tissue and drain ninto the lymph nodes. They then take the images.
The theory is the first or sentinel [guardian] node lights up first on the imaging equipment. The injection substance lights up because it has the same content as military camoflauge gear. Antimony trisulphite used in explosives, the heads of matches and fireworks. Antimony trisulphide is in composition very close to arsenic. Its reflective qualities are apparently what creates crisp images.
They then place a marker pen on the location under our armpit [occasionally they are in more distant locations such as closer to our neck or more in our chest[ so when you go in to surgery - normally that day or the next - the surgeon will see that mark and know where to cut optimally. A hand held device which is basically a Geiger Counter is waved across us when we are being operated on - it goes off when it is closest to the radio-colloid site. That further assists the surgeon to correctly identify the locate the correct sentinel node.
Now, the 'gold standard'' in sentinel node identification [and their
correct removal with a little damage as possible] is a combination of both the blue dye and the radio-colloid injection.
So many of us have surgeons operating at that gold standard so we will have BOTH procedures done to ensure they identify and can remove efficiently the node [sometimes nodes plural] that need to be removed.
So many of us have surgeons operating at that gold standard so we will have BOTH procedures done to ensure they identify and can remove efficiently the node [sometimes nodes plural] that need to be removed.
The theory behind this which has been proved though studies is if the sentinel or guardian node is cancer cell free, given our bodies drain through the lymph glands and the one under our arm nearest our breast tumour is the nearest, draining lymph node, then we are highly unlikely to have cancer spread elsewhere in our body.
There is an error rate here of course - sometimes we can be told our sentinel node is cancer free and it is not for example, but this is a small minority to whom my heart goes out.
If we get the all clear on the sentinel node biopsy, then it means we normally will not proceed to have a full axillary removal ie., we get to keep the rest of our arm pit or axillary lymph system.
This is important for our general health as while around 20% of women with a Lymphoscintigripahy Sentinel Node Biopsy still experience problems associated with the full removal [burning, tingling down arm and into wrist/fingers' shooting pains, muscle wasting, lifestyle limitations and worst of all lymphodema ] 80% do not. The side effects or morbidity statistics for women who have the full axillary node removal are no where near as good.
I think some of the women responding to this issue could be referring to the blue dye only, or the radio-colloid injection only or both.
The agonizing pain I am referring to in my case and which appears to be what women on web sites like this are complaining about is that associated with the radio-colloid injection for the lymphoscinitgraphy.
As for what I am doing about it - at this stage I am researching to the nth degree to ensure I have all my facts, medical research and so on lined up. I will obtain all relevant documents including the Lymphoscintigraphy protocols used at the hospital where I was needlessly tortured. I will then make an appointment with the head of Nuclear Medicine responsible for torturing me needlessly [and likely many other women] as well as the hospitals pain management officer , I will tell them my story, look them in the eye the whole time, present all my evidence so I am not dismissed as a one-off and basically tell them they have a choice here - do they want to be on the side of good and work urgently to end this not just at their hospital and not just in our state, but throughout Australia as well as internationally OR do they want to remain evil doers and sit on their hands while women are needlessly tortured into the future? My actions thereafter will very much be affected by their attitude to this question and what I discern on their eyes, their demenour as well as their words. Rest assured - I will not be dropping this issue until all the Protocols are amended to include proper and full attention to pain reduction or pain elimination. As women with breast cancer we have enough on our plate to deal with without these inhumane morons needlessly torturing us because they are too lazy to spend a few minutes ensuring we are pain free.
Do you know I have found evidence of women with vulval cancer refusing this procedure because of the injections? Yet no attempt has been made to deliver it via a air jet ie., no needle, even though that technology exists and its inexpensive to use at around $10 a shot. Nor any attempt to use EMLA cream and or add 1% lidocaine to the injection itself to deaden the area.Or to use a local. Ending or severely reducing the notorious pain associated with these injections is not rocket science. The fact is the Nuclear Medicine Protocol creators and overwhelming majority of practitioners simply don't give a damn about our pain. Jesse Crowe and Oncology nurse Feltzer and Holmes being three notable exceptions. If they did give a damn they would have attended to this problem 10 years ago. That folks is why I say they are not just negligent but criminally so and why I am urging anyone tortured by them to sue their pants off. If they won't voluntarily amend the Protocol to include mandatory pain relief [as vets must do with this procedure on dogs!] then we keep suing them for pain and suffering, all our medical repair costs, our on going trauma counselling etc etc until their insurers FORCE them to do the right thing
Coco, since you have expressed an interest in really finding out and documenting the truth, I thought you may appreciate hearing about a cou[;e of points you bring up that I understand differently than you. I am not doing this to be a 'wiseguy' but only because I thought you want to hear my version, or additional comments on your subject?
'There is an error rate here of course - sometimes we can be told our sentinel node is cancer free and it is not for example, but this is a small minority to whom my heart goes out.
If we get the all clear on the sentinel node biopsy, then it means we normally will not proceed to have a full axillary removal ie., we get to keep....'
The concern expressed I have been following for the past couple of years is not so much that this one, sentinal lymphnode, may be misread, or wrongly judged.
The real concern has been, and quite justifyable, that the road to and from cancer doesn't always happen as planned or in the ideal, logical manner. for that reason, this happens quite more often than thought, the sentinal node, and even the second or third are clear but the cancer chose another route that the surgeon is not aware of, and in this case the woman is sewed up as 'cleared' when indeed there may be lymph node nr 7, 8, and 10 full of cancer because another oad was travelled.
I was getting treated by this really great PT for a while who actually had a PhD in Physical Therapy. She told me that she had treated many women for lymphedema who had all their lymphnodes removed. Still, with some of the worst cases of lymphedema she had seen , these were women who only had that one sentinal node removed as opposed to all of their lymph nodes. Kat
No - I would not ever use the wiseguy label to any women with breast cancer on this site. We are all grappling to get on top of not only our diagnosis but the medical terms, statistics for this and that as well as the physical side.
What you have said is so interesting and moving. Its from the heart - which I hope anyone reading this can detect I am coming from - in conjunction with as much hard nosed science and facts as I can get my hands on!
I have found from my reading the error rate [false negatives] associated with sentinel node/s can occur at a number of different points - if you only have the blue dye to trace or detect the sentinel nodes, that has a standalone ailure rate associated with it.
If you only use the radiotracer injection as the sentinel node identification method, that has a failure rate associated with it.
If you use the "gold standard" for locating the sentinel node ie., BOTH the blue dye and the radiotracer injection, that is found to have reduced the false positive rate, but nevetheless it still exits.
Next potential failure is with the surgeon not taking the correct one out for whatever reason and/or the equipment used to locate the correct sentinel or guardian node and remove it. These can go wrong as well.
The there is the pathology examination.
There first is a quick one done while we are under anesthetic which is a short look - around 30 minutes or so I am told it takes from go to whoa. It too can miss something and give a false negative also through various means.
The second pathology report there is the full scale minute slice by slice pathology exam which is takes much more time and is done with the flesh and the tumour excised during our surgery. These are more time consuming and normally result in a report which we should also ensure we get a copy of. It too also can have a rogue cancer cell still hidden and undetected within even a very finely sliced specimen.
My understanding is that overall there can be around [or on average] a 5% false positive rate but please do not take this as gospel. I am still reading this material and gathering data so I understand as much as I can
It seems from my reading this material about sentinel node mapping there is also a tiny proportion of women whose lymphatic drainage patterns do not follow the usual, normal or projected pathways anatomists have mapped out. I even read about one women whose primary drainage pattern was ipsilateral ie., into her other breast. Others can have a highly diffused drainage system with no clear "pattern" evident - they drain in all directions. It is indeed incredibly how diverse our bodies can be, including the lymphathic drainage system. Some women even have more than one sentinel or guardian node!
I agree with Katerina777 that the sentinel node detection, removal and analysis mechanisms can have errors at any point which can arise from our incredibly diverse bodies and/or human and/or technical errors.
I am fascinated with Katerina777's anecdote about the Physiotherapist. I have been met with evident surprise, raised eyebrows and I detected some skepticism when as a women with one sentinel node removed I started reporting problems. After all, the single sentinel node biopsy with returned "clear" of cancer was specifically introduced to save us from the harsh morbidity associated with full axillary removals. I am now seeing a Physio 3 times a week and I must admit I was concerned he may be skeptical as well however he took measurements of left and right shoulders, arm, neck and head movements and so on and confirmed there is a problem. I was going backwards fast in the three weeks post surgery but the physiotherapy has really helped me.
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