Lymph node involvement

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  • Tri-lady7
    Tri-lady7 Member Posts: 133
    edited September 2017

    Hi AliceAgnes- thank you so much for your feedback. It's so scary to me that there may be lymph nodes left in my body that are still cancerous but you are right I do need to trust my doctors and trust that the chemo and radiation will get it all. There is no easy answer unfortunately and I have no control which is hard. I go back to Dr. on Oct. 9th to set up the chemo treatments so I am just going to wait. I wish you all the best with your treatments and will be thinking of you in Oct. Also,I had a 3D mammogram in July and it didn't catch any lymph node involvement. It was only the MRI that I did after DX that showed one enlarged node.

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  • peppopat
    peppopat Member Posts: 90
    edited September 2017

    You would have hope by now that would've come up with some way to examine lymph nodes for disease without having to cut the damn things out It's most upsetting when you have a sentinel node that's diseased and then you take the rest of them out only to find that they were all negative. How sad is that?

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  • LeesaD
    LeesaD Member Posts: 383
    edited September 2017
    Trilady- I had 2 of 4 sentinal nodes show micromestasis which is considered less than 2 mm of cells. Over 2 mm is considered positive. My surgeon and oncologist both said chances very small thet any further nodes would be found. I was not comfortable not knowing status of axillary nodes so asked my surgeon to go back in and he was ok with it. Took out 14 additional nodes and 2 of the 14 were fully positive even moreso than the sentinal nodes. I am glad I pushed for the ALND as my Oncotype which was ordered prior to dissection came back very low at 3 so I would've skipped chemo with such a low score and radiation would not have been recommended with just the 2 sentinal nodes micromets and the BMX. I would've had the two positive nodes still there, never would've known and gone on my merry way with just anti hormone treatment. Just my experience. Best of luck to you.
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  • cubbieblue
    cubbieblue Member Posts: 68
    edited September 2017

    Tri-Lady7, I have almost identical stats and the same concerns about untested lymph nodes.  My MO said the same thing about prognosis being the same with reduced side effects, and that hormone blockers would take care of any isolated cancer cells the chemo and radiation might have missed.  Because you are also hormone positive, I imagine you will be offered this treatment.  I know it is very scary and the fear never completely goes away, but the doctors seem confident in their treatments, so I try to share in their optimism and take comfort that I have attacked this beast with four different weapons!  Good luck as you continue your treatment.

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  • Tri-lady7
    Tri-lady7 Member Posts: 133
    edited September 2017

    Hi LeesaD and cubbieblue- thank you both for your responses. LeesaD may I ask you if you feel any signs of lymphodema? That was my doctor's concern. I don't know which is better hoping the chemo and rads will get anything still there or going back in and risking lymphodema. I haven't really talked to my doc about the possibility of doing the axillary node dissection yet. I am going to discuss further with them this week. It's just crazy we have to think about these things



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  • LeesaD
    LeesaD Member Posts: 383
    edited September 2017

    Trilady- I've had three appts so far with a lymphedema specialist and he is going to see me on a regular basis just to be safe. The 18 nodes they removedhe feels puts me at a high risk and also now the radiation increases the risk. All of

    my measurements so far are fine and I saw him last week and my measurements had gone down even which makes sense as I've started back to exercising regularly. He puts me at stage 0 currently for lymphedema. They fitted me for sleeves and gauntlets which I wear when I exercise. I do feel heaviness in my arm sometimes when I've done too much.

    No swelling at all. I was very active prior to my dx with an advanced yoga practice, kickboxing, weights, running and trying to build up my stamina now that I've completed rads. From what I've read and been told it's a slow process and to not do too much. Honestly I was concerned about lymphedema but the fear I had of the unknown status of my nodes was far greater. I felt ican deal with the arm issues if they come about. So far so good. Again just my experience. Others have faired worse with the lymphedema.

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  • Singapore75
    Singapore75 Member Posts: 8
    edited November 2017

    Hi everybody,

    I am new here. I am 42 years old, triple negative, stage 2 , 1/26 lymph node involvement. I had lumpectomy with recon back in March 2017. I finished my chemo 7 weeks ago. Recently I got BRCA test result and it is positive though nobody in my family has breast cancer. My genetic councelor suggested to go for double mastectomy and oophorectomy. Radiologist suggested if I go for double mastectomy, I won't need radiation. His reasons are wide clear margin, 25 lymph nodes taken out for 1 affected node. So I should be in a good shape. Iwent for 3 radiologists opinion; 2 of them said same thing, other one suggested radiation n needed. I am confused to think how safe I would stay without radiation. I am worrying about lymph node area as there won't be any protection without radiation. It's just my thinking.What should I do now? I have to take decision within this week. Pls help me.

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  • Veee6
    Veee6 Member Posts: 2
    edited November 2017

    prayers to you

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  • Veee6
    Veee6 Member Posts: 2
    edited November 2017

    I received news today that my biopsy of my lymph node is not cancer , but Dr told me that future pathology is still being done . I’m confused about this . Has anyone ever went through this ?

    God bless all of you

    Sorry if I’m posting incorrectly

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  • canadaliz
    canadaliz Member Posts: 37
    edited March 2018

    Hi, I'm Liz and I'm ER+ PR+ Her2-, had my lumpectomy 2.5cm tumour right side on Tuesday and 3 sentinel nodes removed are positive. waiting on balance of pathology. Does that for sure mean chemo?

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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    Hi canadaliz, Yes, 3 positive nodes means you should have chemo. I, too, had 3 positive nodes. Chemo was not as bad as I thought it would be. I finished chemo two months ago and I feel good. You will be given several medications to prevent side effects. Be sure to read the threads from other ladies here on BCO who went through chemo. You will learn tips and tricks to avoid and/or handle side effects. I notice your cancer is ER/PR positive. So was mine. You will probably have a combination of chemo drugs such as Adriamycin and Taxotere. You will lose your hair for a while (I know that sucks), but that is usually temporary. Please keep us posted. We are all here to support each other through this journey. Best of luck.

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited June 2018

    After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast (with a 40% chance of cancer also showing up in my left breast), I had bilateral mastectomies on January 26, 2018. The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and so she just took the one sentinel lobe. On my followup appointment on February 7, 2018 with my surgeon, I was devistated to learn that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. On March 13, 2018 my ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! On April 25, 2018 I started 5 weeks of radiation to my chest wall and regional lymph nodes, I completed radiation with minimal side effects on May 31, 2018. I would like to find another breast cancer survivors of ILC and DCIS with lymph node involvement, that have skipped chemotherapy. Is anyone out there in my situation?


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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited June 2018

    May I ask what grade your cancer was and stage? I basically had same but only IDC with DCIS. I unfortunately did not get the oncotype test. I was told positive node bought me chemo. I had an additional 16 nodes removed all negative. What is the difference between ILC and IDC?? I skipped radiation.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited June 2018

    Dodgerick---I am similar but not quite.. Actually I still don't know what I exactly have or had.  4cm  tumor with ductal and lobular features (mixed) DCIS present in sample -tested 2 hot nodes (sentinel) 1st one positive (closet) was micro only 0.3cm invasion.  2nd node was negative.  I thought it was the standard during surgery that if lymph invasion was over (insert amount here) then they would also remove your auxiliary nodes.  I would think the radiation treatments would take care of any stray stuff going around, or your body simply passed those cells via normal process.

    My onco was also 17.  No chemo.

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