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to Babyseeester, regarding sentinel nodes

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Posted 2/11/2006 12:41 AM (GMT 0)
Hi Kathy, I read your post to Chloe about the sentinel node and I'm very, very curious about your experience. Can you tell me more about the fact that you had 4 nodes removed with only 1 involved, yet it wasn't the sentinal node.

I have always wondered how the sentinel node plays into dx and such. I really appreciate your honesty, candor and full experience. Thanks!!!!

I wish you the best,

Laure'
Posted 2/11/2006 3:49 PM (GMT 0)
Hi, I have always wondered about this, too. My first specimen was radioactive but not blue and it had one sentinel node which was negative. Next specimen had 3 positive nodes which were also not blue and there appeared to be no other blue nodes in the specimen. However, final analysis showed I had a total of 5 positive nodes. I have never asked about this, but have wondered about the first being negative, the blue - not blue thing.

Anyone have an answer?

Judy

Posted 2/11/2006 6:39 PM (GMT 0)
OK, now I'm worried.  I just had the sentinal node done and it was negative.  I don't know from the blue thing
Posted 2/11/2006 8:37 PM (GMT 0)
Many doctors have the radiologist inject both a blue dye and the radioactive isotope. The blue dye makes it easier to see the lymph nodes that have taken up the dye compared with using the "geiger counter" to just find radioactive nodes. What the literature says is that if you have a surgeon who performs many, many sentinel node procedures, the success rate is better than 98%. Still, whenever I hear about someone like Kathy or Judy having the first node negative but others positive, I get worried, too. Just too many chances for errors, IMHO.

Laure'
Posted 2/11/2006 10:26 PM (GMT 0)
My surgical oncologist does only breasts and always does a sentinel node. She finished her fellowship 5 years ago. I have always wondered about my "biopsy". My tumor was just below the nipple and that surgeon decided to cut a wedge from the nipple because a needle biopsy would likely shoot through the tumor since it was so close to the skin. (Final report said tumor extended to but not through the epithelium). I had to wait 4 weeks after the biopsy for the surgery. My first surgical oncologist said I could wait from December 1 until Feb 20 for surgery since my biopsy diagnosis was mucin carcinoma. Ha-Ha what a joke -- "Infiltrating mammary carcinoma".

I have always been concerned about "spreading the disease" after that "cutting" biopsy, even though my plastic surgeon, who saw me through those treacherous 4 weeks, assured me that cancer does not spread that quickly.

Still, I wonder.

Judy
Posted 2/12/2006 12:42 AM (GMT 0)
From what I have read, whether or not you have positive nodes doesnt make a difference on your course of action...does it? It simply confirms if the cancer has spread outside of the breast. But since cancer can spread without having any nodes positive, the procedure, IMHO, is redundant. Having no nodes positive didnt change my chemo, and is only good for determining my stage of cancer. So I'm a stage 2 instead of a stage 3, yipee. It certainly hasnt changed my outlook - I still feel that it will come back someday (since my cancer was a grade 3), and now I have to deal with lymphedema as well. Whether or not you have nodes positive doesnt seem to change anything, and only seems to add to the whole ordeal.
If I am wrong, please, please correct me.

Chantry
Posted 2/12/2006 1:33 AM (GMT 0)
Chantry, when you hav 4 or more positive nodes, you must have radiation -- at least that is the standard of care in the US. Also, breast cancer spreading outside the tumor to the nodes means that there is more risk of other organs involved or cancer cells wandering throughout your body looking for a place to affect. I, too, had an agressive tumor, but as my med oncologist said, my risk for recurrence was greatest because of 5 positive nodes.

I think it is great that you have done genetic testing. My onc would like for me to do this since 5 women in 3 generations of my family have had breast cancer. However, only one had breast cancer prior to 50 years old, so I really don't think testing is necessary. One more family diagnosis, though, and I will reconsider. After rads, I now take Arimidex with no symptoms but a head pain maybe once every month or two (I think it's when I take it on an empty stomacy). I guess we will all just have to make our individual decisions about treatment and learn how to cope with stressing about recurrence. I am sure your anxiety is much greater than mine since you are so young and have a baby.

Judy

P.s. Those nodes also got me 12 Taxol treatments in addition to the 4 AC.

Post Edited (JUJU8872) : 2/11/2006 6:38:47 PM (GMT-7)

Posted 2/12/2006 2:31 AM (GMT 0)
Hi Everyone

I just had to put my 2 cents in, If you google sentinal node biopsy you will see that the sentinal node does indeed have alot to do with your staging and what type of treatment you will have. I was told that the sentinal node is like a guard to the other nodes and it is the first node that the cancer would attack. That is why they do the dye and hopefully get the sentinal node, instead of having to take 15 20 or even 49 these are numbers I have read from the ladies on this site. That is way too many nodes and causes lymphodema. Anyway correct me if I'm wrong but this is what I have been told. My cancer was stage IIB and grade 3. I had one out of 3 nodes positive and I have had to have alot of treatment.

L&H
Bernadette
Posted 2/12/2006 2:46 PM (GMT 0)
Good Morning, everyone. Sometimes I wonder just how much I do know about this disease's treatment. I believe, Bernadette, that you had a lumpectomy and that is why you have rads, not necessarily because of the positive sentinel node. I don' know, however, why you had to do the Taxol -- perhaps because of the grade 3. I don't know what stage my tumor was -- I asked but was ignored. I am either stage IIb or a stage IIIa -- the difference between the two for me is whether or not the nodes had attached to each other since my tumor was only 2 cm.

I know we can not compare ourselves to each other, but I do worry because my sister's treatment and resulting symptoms were so different. She is almost 7 years from diagnosis and I can't help but feel I won't make it. Not only did I have more treatment than her, I also responded so differently to that treatment. I lost 17 #, she gained 50 #, she could not smell anything, I smelled everything, she had to have shots before every treatment, I had none.  She felt sick almost all the time, I almost never did. She was tired at the end of her AC, I felt great and only got tired at the end of Taxol. With the AC treatment, she got the C first, I got the A.  It's all so crazy.

Oops, I believe I am beginning to worry again and I promised myself not to do that this year.

Love you all, and thanks for listening to my fears and Chantry, sorry if I made you worry more. Somehow it has just got me this weekend.

Judy

Posted 2/12/2006 3:07 PM (GMT 0)
Hi all....weighing in here too...
My SNB was 6 years ago when it was much newer. I switched surgeons because my first one had less experience and was less sure of her ability, but bou did I love her for the first go-round, she was a gem. Any way, the SNB status back then impacted the treatment as well. Positive nodes may not have dictated whether one got a mastectomy vs a lumpectomy but it did mean rads to the axilla area and also it would have meant taxol treatments as well. In 'the old days', standard was 4 AC for negative nodes and add 4 T if positive nodes.
It may also influence how screening and surveillance is done afterwards.

The SNB also saves our nodes and saves the nerve. I had 15 removed, much to the doc's surprise. Each time he thought it was 1 sample it was 3 or 4 tiny nodes. I have been lucky and have no lymphedema issues, doc said it has to do with what and how much gets cut as opposed to number of nodes.

As for the blue dye and radio tracer, I was told that some hospitals did both, just to add an extra bit of measure...they were looking for the hot blue nodes...but some were hot and others were blue...or a combination thereof (warm blue, cool blue...). All I know is that the radioactive injection was the most painful part of the whole surgery for me.

As far as differing treatments, we need to keep in mind that there is more than one way to tame the beast...2 teams may approach it differently to get to the same end, and also standards change. We have to trust our doctors and teams or find new ones that we can trust.

L&H,
Lori
Posted 2/12/2006 5:41 PM (GMT 0)
Hi Everyone

Here we go again, I know that a big part of my treatment was because I had such a large tumor 4cm. That has alot to do with how they determine treatment. Each Dr approaches it in a way that Im sure has worked for them. We all have had simular but different treatments. (does that make any sence)

I agree with Lori, the most painful part of all of my treatments was having the dye injected for the SNB. I wish there was a way to do it without so much pain.

There are areas on the net for more information on all of this, including staging and treatment.

Judy pleas don't worry, I know that is easy to say. You had a mast right? That is your safest way of avoiding a recurrance. We all worry too much about it coming back, I wish there was a way to just put it behind us. With everyone I have talked to they all feel like it is only a matter of time before it comes back.

L&H to all
Bernadette
Posted 2/13/2006 12:41 AM (GMT 0)
Thank-you everyone for your replies and assurances. For some reason, it too hit me a little hard this weekend. It is sometimes so difficult to be thankful for the days which you are given when you are worrying about something yet to happen, and yet, there are women here who are going through so much more than I have yet to encounter. Thank-you for putting up with my groans and complaints. Some of you have more courage than I can imagine.

Chantry
Posted 2/13/2006 6:50 PM (GMT 0)
Wow, I guess I opened up a can of worms, huh?  This is a great discussion.

 

I never had a SNB.  During my lumpectomy, they removed 4 nodes that were clumped together.  The first one was very large and the cancer was spilling outside of the capsule.  The other 3 were neg.  My surgical report doesn't say anything about a blue dye.  One thing that I remember, though, is after the mast. 3 weeks later, the surgeon came to my room and said there were no positive nodes, but there is no mention on the surgical report about taking more nodes.  I never asked him about it. 

 

I may be wrong, but isn't the sentinal node in the chest area?  The nodes taken on me were all from the axilla.

 

Anyway, I was a stage IIIA, with the main tumor 6cm along with smaller 'satellite' tumors.  The largest node was 3cm.  My treatment was a little different than most.  I had FEC followed by 4 rounds of taxotere.  Then radiation.  It has worked, because my tumor marker remains well below normal.

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