How do you know your stage if you only had sentinel node bx?

3girls
3girls Member Posts: 94
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I had a sentinel node bx that was positive- because of recent studies the standard now is to not do ALND.  With my size tumor and positive node I am considered stage 2A- but I keep wondering if I have more positive nodes.  If I have 4 or more that would put me as stage 3A- still considered early stage but with decreased percentage of 5 yr survival and I would assume closer monitoringie:scans.  I am her2+ so more aggressive and lately I just keep worrying about this.  Has anyone else thought about this?

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  • ali68
    ali68 Member Posts: 1,383
    edited February 2012

    Hi Hun , I have very small lump on breast and seven cancerous lymph nodes. I was shocked when told I was stage 3 but was told because of the nodes. Onco said they zap you with strongest chemo and I'm having FEC x4 & Taxotere x4. then surgery & rads. Will be checked more closely and what you have said. She was more worried about the nodes then the lump.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2012

    3girls, the purpose of staging is to set up your treatment plan. Since you are Stage II and Her2+, chemo will be strongly recommended (could be you're had it already). Also, since you had a positive node but no ALND I am assuming rads to the axilla will also be recommended. So whether you are Stage II or Stage III at this point might make a difference to your own emotional reaction to this whole situation but not to your treatment.

    As far as follow-up, that's something you should discuss with your onc. If you feel you need a closer follow-up than what s/he recommends, ask about it. You should feel comfortable with all decisions made.

    Best of luck.

    Leah

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  • greenfrog
    greenfrog Member Posts: 269
    edited February 2012

    I understand your concerns. Seems a litle odd that after finding one fully positive node that they are not going to investigate your other nodes too. Personally I would want to know the full extent of node involvement and I would also want cancerous nodes to be surgically removed. Lymphoedema can be caused by radiation just as much as surgery so I don't see what is being achieved by their policy of non removal. I "only" had ITC in the SNB but I still had a full clearance.

    I get rather peeved by rigid "policies". All that matters is the most effective treatment for you as an individual - that includes peace of mind.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2012

    You are raising a very current issue!! But, you are experiencing a closer matched treatment than you would have years ago. By staging, oncs were able to give anyone a "blanket" standard of care and then hope for the best. But they have found over the years that it is better to treat the patient individually. So, they can stop the ALND (you can get permanent numbness and quite a crater!) to ease your recovery and give you what your TUMOUR needs, not your stage.

    I have read that soon we won't even be using the staging numbers. I think that is a very proactive move and salute the industry. Some women were WAY over-treated, and others WAY under-treated!! The oncotype scoring is helping individualize treatment and that is a fabulous move forward!

    I wish you only the best!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    3girls - don't assume it is standard of treatment to bypass ALND for all patients.  My surgeon, who is very progressive, insisted on it and while I only had a micromet in the sentinel node, I had a 6mm node further up.  I am not sure I would have wanted to rely on chemo and rads to eradicate a node of that size.  It was never seen on my MRI before BMX.  The skill and technique of your surgeon is very important - while I do have very mild LE I do not have any permanent numbness or any disfiguration in the underarm.  My ALND was done 5 weeks after my BMX.  Good luck to you!

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    I am stage IIB. I know to other women also triple positive stage III that also had 6 tx of TC and 17 tx of herceptin. Both of them got rads because of node invasion. I did not have nodes but in a gray area and got a pass on rads.

    My point is a few percentage points aren't the issue here. It's treatment. IIA or IIIA you will still be getting the same exact treatment. That's what's really important. BTW they did get all there nodes removed I only got level I. We all have LE.

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  • greenfrog
    greenfrog Member Posts: 269
    edited February 2012

    When I was faced with the option of having axillary clearance my surgeon spun me the old "if everyone keeps having clearances how will we know if they are really essential" line.

    Fair enough - except I had a 1 year old to bring up so I advised her politely to find another guinea pig. The multi-disciplinary team at my hospital took a vote on it and 6 doctors said I should have clearance and 6 said I shouldn't. The medics are utterly divided on this issue. Until they sort themselves out and can give some definitive guarantees I will always opt for what some might regard as overtreatment. 3girls - how about getting a 2nd opinion on this?

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  • ali68
    ali68 Member Posts: 1,383
    edited February 2012

    I have just got back from seeing my surgeon and my lymph nodes and breast lump has shrunk by 50% after two chemo's. I asked her again what stage I was and she said I don't like staging. She said staging will be a thing of the past soon and she goes of every person. She also said never read about another Cancer patient and think why am I not having that treatment. Everyone is different and there are so many different breast Cancers.

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  • Elizabeth1889
    Elizabeth1889 Member Posts: 1,036
    edited February 2012

    My SNB appeared negative during my lumpectomy, but the final pathology report reveal a 5mm tumor in the lymph node.  My BS did not want to remove any more lymph nodes, but he was overruled by the other surgeons on the hospital board so I had an ALND 18 days after my lumpectomy.  I am really glad I had the ALND even though all the other nodes were negative and I now have mild lymphedema.  The peace of mind of knowing the rest of the nodes were clear meant a lot to me.

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  • 3girls
    3girls Member Posts: 94
    edited February 2012

    Thanks for the replies.  Talked to my MO yesterday and he is willing to do scans for my peace of mind- that was what I was looking for.  Not knowing how many nodes are involved I am just so afraid about not knowing about distant mets

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited February 2012

    3girls, look at my signature :-) I'm the same as you! Difference is that My surgeon would have done the ALND but after researching the latest research (I have full access to academic papers etc because of my job) I chose not to have it. As your doc has said there is no statistical advantage to ALND...



    I know this means committing to axilla rads but I think for my HER2+ status my aggressive RO would have pushed for that anyway. The stats for developing LE after ALND are potentially up around 30%. The stats for developing it after rads is below 10% although my RO has said that if anymore of my nodes are involved the stats go up to between 10-15% for post rads LE.



    Because of the positive node I did get a scan after surgery where nothing was visible which was reassuring...



    What we are doing is looking like the new standard.



    Regards Jenn

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