Sorry to be a pain but I have come back from seeing the oncologist and I have so many questions.
One thing I dont understand and no one seems to be able to give me a good answer - I had a sentinel node biopsy done at the same time as a WLE. Before the op the surgeon said he would take up to 4 nodes if necessary. But he took 9 nodes I am told, even though the sentinel node, and all the others, were free of cancer.I thought the idea of the sentinel node procedure was that, if the first was free of cancer they wouldnt have to take more than a couple more.
The other thing that surprised me was that the oncologist was surprised at where my WLE scar is- she said it wasnt the same as on the picture.
I guess I should have asked more questions when I was there but if anyone can suggest reasons for the above I would be very grateful.
hi ladysue… when you have the sentinal node removed you have the blue dye injected beforehand… the surgeon then takes the sentinal node and any others that contain the radioactive stuff and the dye … in your case that was 9 … in my case that was 3… if they are clear… great news… better to take too many and be certain than not enough and have to go back for more… im not sure if it matters where the scar is possitioned… as long as they have removed the problem… thats what counts… it maybe a case of the surgeon cutting in a different place to get a better result…perhaps then needing to remove less tissue… next time you go … write all your questions down, as i did … and ask away … my onc was very understanding and filled my questionair in for me … i lost count of the number of times i read and re read it … hope this helps xx angie
Did you ask for/get a copy of your pathology report? that should explain in detail what the nodes contained. I seem to remember that if they find microcells (probably not the right word) in there they are classified as clear. The path report will tell you what the laboratory told the surgion about the sential nodes and that might explain why they took more. perhaps they contained unuusal but not cancerous elements.
Why dont you ring the breast nurse tomorrow, she should be able to look at your file and answer your questions. she might arrange for you to see a member of the surgical team to go over it with you, thats what mine did when i had questions about the path report.
well you learn something every day, i understood we all had a different number of sential nodes, but i thought the maximum was 4. I did not realise there could be 9 so assumed the other 5 were auxillary–I stand corrected.
Angie M. The surgeon told me he would remove
up to 4 nodes. That is why I was surprised, especially as, when I saw him yesterday he didnt mention taking 9.
Old and Lumpy. I havent seen the pathology report- I will ask for a copy.You may be right about the nodes being unusual. I hope thats all it is. I am going to have radiotherapy and Femara
are you sure the oncologist had your report??? did she check your address and date of birth before she started talking to you.
Also i think her opinion on fair skin does not agree with my team, I use a sunbed and have a tan, but they said it does not seem to affect who burns and who does not.
I will check about the pathology report. I dont know if she had the right one. I have been concerned before that they have muddled me up with another patient. Once, in the hospital, the nurse came over to me with the wrong notes.They also sent me home earlier than I expected and without the drugs I should have had.Maybe I am getting paranoid. lol
hi … i the surgeon would not of had the path results at the time of sentinal node removal… they come later when they have been tested. they are frozen and sliced and each piece is looked at through a microscope in the histology dept … when they inject the radioactive stuff in to the breast the lymph glands job is to remove any foreign body … when they are removing the sentinal node… they do so with the help of a probe… this probe makes a very loud noise when it is near radiation…so if more nodes than expected turned blue… and were radioactive they would of been removed… by removing 9 that contained radiation the surgeon was being sensible , and trying to save you having to go back in to surgery again…
something about your comments makes me believe you either think they have done something wrong during surgery… or …the surgeon had the wrong notes… am i rite in asking this ?
Angie, sometimes the surgeon DOES have the results while you’re still under. That is the case when they use a procedure called OSNA (can’t remember what it stands for). With that they test the nodes while the patient is still under anaesthetic and if necessary remove more nodes.
Ladysue, I would double, triple check that your onc was actually looking at your notes, particularly as you say there have been mix-ups in the past. Find out what your hospital number is, and make sure that they don’t look at the notes of some other Sue Jones (or whatever your name is). It CAN happen if they don’t do the proper checks of name, address and date of birth every time.
sorry choccie… i stand corrected… the hospital i was under dont have the report at the time of surgery, and i assumed other hospitals were the same… im sorry if i mislead anyone…
lady sue… ive just seen your last comment… this could be a very serious incident… and if your not 1million % possitive your surgeon actually read from YOUR notes … make another appointment to see the surgeon … and they should before they speak to you… check they have the correct notes… make sure they check your name and date of birth … look on your hospital letters and write down your hospital number … all these things should match… im sorry if i have mislead you … angie x
Thank you ladies. I will ask for a copy of my pathology report tomorrow. I will know then if that says the same as what the oncologist told me.I have lots of questions for the breast care nurses to clarify things so that I can stop worrying and just get on with the treatment.
Sue
Dear Sue,
From the BCC glossary of breast cancer terms
SNB (Sentinel Node Biopsy)
Also known as sentinel lymph node biopsy, this is a method to detect whether any cancer has spread to the lymph nodes. Blue dye and/or a radioactive material are injected into the breast and will travel to the first or ‘sentinel’ node that would normally receive lymph fluid from the area of the breast containing the cancer. The sentinel node is identified by the surgeon and removed (sometimes it is necessary to remove more than one). If there are no cancer cells in the sentinel node then it usually means the other nodes are clear too. This avoids the need to remove lymph nodes unnecessarily. However, sentinel node biopsy is not appropriate for everyone and your surgeon will discuss whether or not this procedure is an option for you.
(a sentinel is a guard so it’s as if the first lymph node is on guard to defend the restof the body)
Axilla
The armpit.
Axillary clearance
An operation to remove all of the lymph glands from the armpit (axilla).
Axillary dissection
An operation to remove some of the lymph glands from the armpit (axilla).
oh i doubt if its the surgeon that got it wrong, the checks and double checks in the operating theatre are so strict. The anaesthetist checks as well.
I was just thinking given some of the bizarre comments the oncologist made perhaps they were not on full speed that day, or not that experienced. it might not have been the main oncologist but one of the students. In my planning meeting i asked questions that the poor girl could not answer and she had to go out and get the main woman in. This poor girl was the one that had to plan my intensive scar radiology. She obviously kept getting it wrong and the radiologist kept saying, “dont you think it would be better if we did this?” i had to ask the breast nurse to make sure the plan had been double checked by the senior doc. I know they have to learn sometime , but i do not want them to practice on me.
But I was reassured that these new people do not plan your treatment they just practice at telling you what is going on and practice some of the calculations, and it is all double checked.
unfortunately no one is double checking how they handle the discussions.
just a thought-- how many injections did you have for your die? I remember the lady that did mine (and was having to cope with my intense needle phobia) said you are lucky we dont need to do more than one injection, some tumours are on more than one path. so if you had more than one injection that would mean more than one set of sential nodes.
and yes there is confusion on this site, because some hospitals have the facilities to do the procedure where he get injected first whilst you are awake and that means they can get the results when you are in the theatre. but other cannot do this, they inject you whilst you are asleep and get the results whilst you are still in theatre, Because i have a huge need phobia they offered me the first option. I cannot remember the percentage of false positives, but it was enough to make me go for the injection whilst i was awake. (but they did give me lots of lovely drugs that put me in cloud cuckoo land)
Thank you for all your comments oldandlumpy. The oncologist was very experienced, probably nearing retirement. Maybe she was having an off day. Anyway, because I had lots of questions afterwards, the nurses have arranged me another appointment with the oncologist so that she can explain things.Its not for another 2 weeks though. When I see her I will ask for a copy of the pathology report.
I only had one injection of the die. The hospital I go to doesnt have the facilities to test the nodes during surgery.
Sorry to hear you have a needle phobia- that must be awful with all the injections needed during treatment for BC. Luckily I dont have it as I am insulin dependent so have to inject twice a day.I am claustrophobic though and panic if I have to have an MRI.
This seems to be one of the areas where everyone is different. Seemingly everyone has a different number of nodes - anywhere from about 10 - 30 in each armpit!
If they know/are pretty sure, you have lymph involvement before surgery they often seem to go straight to lymph clearance which is the best way of being sure they get all the affected nodes even if the cancer presence is minimal. I knew before surgery I had one node affected, after surgery it turned out to be three with “pre-cancer” whatever that means. They didn’t tell me, and I didn’t ask, how many I had to start with.
I did do some reading on a sensible site (alas I forget where)that suggested that our physiology is often different from each other. Whilst many people have one sentinel node (or one in a line from their tumour) others may have two or three and this is why the dye is so important in helping decide which nodes to take. Some surgeons will take the sentinel/s and one or two past it/them for checking just to be on the safe side. However, I’m sure I also read that some people don’t have any sentinels, and any or all of the nodes could be affected - this would evidently show when they injected the dye.
Just to complicate it further, it seems that some surgeons may take one set of nodes and leave the others behind (can’t quite recall what that’s called).
I think you’re right to ask why 9 when you were told 4 but hopefully it won’t be anything sinister, just precautionary.
Hope all goes well for you and I haven’t confused you even further.
One thing I’ve learned over the last year is just unique we all are - inside and out!
I had 3 removed after having the dye, 1 was infected they then cleared the rest of the lymph nodes from that area, I was told about 15 and they took 24, so I obviously had more there than they thought