Consultants who lie
Consultants who lie The day after my mastectomy and axillary clearance i asked my surgeon how many nodes he had removed. He told me 20. A few weeks later when he rang me with my results he told me 6/14 were positive. I asked him why only 14 had been tested. He said in a very patronising way that “They don’t test them all you know”.
I assumed this was the norm.
Since then i have not met or heard of any one else who did not have all removed nodes tested nd it played on my mind. After all i could have had 6/20 or 12/20 a big difference.
So when i went to see my surgeon on Saturday re my swollen arm i asked him. He categorically denied ever saying i had 20 nodes removed. When i mentioned what he’d said when he rang me with my resuts he said. "I would never have said that. He claimed that he didn’t have time to hunt for and count nodes when he removed them and said only 14 were removed. This also bothers me because it means that nearly half my nodes were positive. Maybe i’m just a pessimist.
i know he told me 20 but i couldn’t argue with him.
I’ve never liked him very much, an excellent surgeon by all accounts but no people skills. I don’t feel at all happy that i’m now under his care. He’s so different from my kind, sympathetic oncologist.
Just felt i had to share this with somebody
Kelley
node testing Surgeons take out a lump of tissue from the armpit and are not going to know exactly how many lymph nodes there are as they don’t do the examining, that is left to the pathologists… I think the number tested depends on how thoroughly the pathologist scrutinises the tissue removed from the armpit and how much effort they make to take out all of the lymph nodes. The tissue from your surgery will be a mixture of fat, tissue and lymph nodes. Lymph nodes are roughly the size of baked beans and the number varies between women so there can be as many as forty or as few as 10. I expect the surgeon just gave a guess off the top of his head which he then forgot about just as quickly.
Lymph glands are removed to test whether the cancer is likely to have spread elsewhere, it is better to have one or two than four or more as the fewer affected the less likely that cancer has moved anywhere else in the body; but I don’t think it is necessarily any worse to have 7/14 affected than 7/20 or more.
I agree with you about the communications skills of surgeons - I think they become surgeons because a lot of the time the patients are unconscious. But many other doctors are as bad at communicating as suregons are. Also perhaps we patients have a few problems of our own as when you are given a diagnosis of cancer, it somehow it knocks out your normal confidence and makes it much more difficult to take in what they have to say or think of the right questions to ask. At least that was my experience. I’ve found a few books have helped, including the Breast Cancer Book by Val Sampson and Debbie Fenlon, and Dr Susan Love’s Breast Book - the second one is very american and very up front so may not suit everyone.
Mole
Thanks Mole I think you must be right. And thank you for the explanation re the nodes. It makes sense, i just wish the surgeon had explained this to me at the time. It may have saved me from worrying so much. i do tend to latch on to things. I wish that doctors realised how important information is to some people. No matter how bad the reality is i’ll imagine worse if i feel i haven’t been told everything.
Thanks
Kelley
Kelley ask your surgeon for a copy of the pathology report and then you’ll see the exact number of lymph nodes that were removed and how many were tested. The surgeon may not have had time to count the number of nodes removed, but the pathologist may have found and counted them all. The surgeon should explain the pathology report to you if you want to go into the detail as well.
best wishes
Daphne
Doctors Doctors don’t always realise just how we hang on to every word they say and look for meanings in everything. I think most of us are like this if we want to understand what is happening to us. I once got very upset because the consultant saw me before my appointment time instaed of keeping me waiting. I was convinced it was bad news.
Are you takng someone with you to appointments? Sometimes they can ask the questions or remind you of what you want to ask. Certainly you can ask for a copy of the pathology report.
Susan
Path report I got a copy of my Pathology Report which i’ve just got out for the first time in a while.
It says “…six of fourteen axillary lymph nodes…” so i guess there were only 14. But why did the surgeon mention 20 and not correct it when i referred to this number in our subsequent telephone conversation.
Why have i been worrying about these nodes which may never have existed? How sad is that. There are enough real things in the report for me to worry about.
For example “Apical node fragment 0.7cm” What does this mean exactly?
It also says that main tumour size was 20mm but “…whole tumour size cannot be accurately estimated.”
My oncologist always looked at the bright side and worked out my prognosis using the 20mm tumour size but this obviously was an underestimate!
The report just seems to raise more questions for me than answers. This compulsion for information that i have is probably not a healthy thing but how do you change the way you are?
Thanks for all you replies
Kelley
Information quest Hi Kelley,
I can’t help you with further understanding of your path report, but it is important that you do - maybe someone on this site or a BCN or your onc can answer your questions.
I can comment on is your quest for information which I think is very healthy and why should you look to change it. Many of us have been here - feeling we are being paranoid or a nuisance - and actually that is just not the case. What you are doing is trying to understand something which is seriously affecting your health - can there be better motivation. Some people are happy just being reassured without knowing what things mean - and that’s fine. You are clearly not one of these people and that’s ok too. Accept that you will not be happy unless you have a clear understanding and persist until you have one.
This is a big learning curve and in the end I seemed to go from a position of total ignorance to one of at least being able to question and reach a level of understanding that I was comfortable with. You will to I’m sure. These are tough times - just be who you are - and get what you need. I wish you all the very best. Keep posting and let us know how things are going for you
Axillary Sampling v Clearance I had chemo for a 4cm grade 1 tumour followed by a wide local excision and node sampling back in June 2005. I was expecting an axillary clearance because we knew there was node involvement. However after the surgery I was advised that only node sampling had been carried out and the pathology report showed I had 4 out of 14 positive nodes. Does anyone have any idea why they did not do a full axillary clearance when they knew up front the area was affected, and will this affect my prognosis?
— It just occurred to me that he may have added the 6 to 14 which makes 20 by mistake! Very silly mistake but it may explain things.
I understood that some tumours are an irregular shape with bits like arms sticking out which makes the size estimate difficult.
I hope this helps, but why don’t you ring up your breastcare nurse and ask her to find out what you want to know? This is what I did.
—unknown number —Kelley, you have a right (at least here in the US) to receive copies of anything and everything you have had done. If you have this right,exercise it and get copies of the pathology report. If you don’t understand the results, just Google pathology reports and you might find the answer there.We women have to take a stand against, what I call “Daddy Doctors”.We are adults and should be treated as such.
Love and Hope
— Thanks Frobbi
I have got a copy of my report but it is not terribly detailed. I think the problem was my consultant answered my question with a guess and i assumed he was giving me facts. It let to me having a misconception. eg he said he’d taken out 20 nodes the report said 6/14 were tested. When i asked what about the other 6 he said “they don’t test them all”
From what people have said to me on this site, it sounds like there were only 14 and they were all tested. It was the consultant who confused me and caused me to spend a lot of time worrying about the “missing 6 nodes which hadn’t been tested”.
It just shows how important clear communication is.
Thanks
Kelley
More comfusing than mine Perdy i feel for you as i have been in a state about these darn nodes.
when i had my lumpectomy they thought the tumour 1.5 by 1.7 she said anything over 2cm she just did total lymph node clearance, but as i was worried about lymphodeama she wud do sentinel lymph node biopsy.
i had 4 glands removed all clear which i was so pleased about but the tumour was eventually 4.4cm after i had a mastectomy so i asked about the glands, oh well she says we are going to do chemo that will sort the glands out.
Do they know what the hell they are doing this is our LIFE???
I dont trust anyone.
ruth xx
Ruth Perhaps it isn’t as bad as you fear. The nature and extent of a tumour can only be fully discovered after it is removed. In your case unfortunately it turned out to be larger than suspected, but the (very) good news is that you had clear lymph nodes. The surgeon was probably right when she said chemotherapy would “sort the glands out”, because it is a systemic treatment so will attack any stray cancer cells which might have been present but were too few or tiny to be seen in the post-op. pathology.
However, since you have worries and/or doubts, you should tell your medical team precisely this. Tell them frankly what is bothering you, and above all get them to explain the points which don’t seem clear to you.