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Occult Primary with Lymph Node Metastases

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  • dennyvol
    dennyvol Member Posts: 9
    edited October 2014
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    Diagnosed with breast cancer, after diagnostic mammogram, nothing on mammogram, but enlarged lymphnode, biopsied lymphnode tested positive for breast cancer on 8/11/14. Had, a breast MRI, suspect spot, breast biopsy negative, then pet/cat scan, nothing on breast, saw something on liver, liver mri confirmed that it was a hemogloma benign. Lumpectomy and level 1 and level 2 lymphnodes removed on 9/16. Lumpectomy revealed abnormal cells, no cancer, only 1 lymphnode affected, 3mm of cancer. Diagnosis confirmed as Primary Occult Breast Cancer, Axillary Only. Another cat scan done today, nothing shows after surgery. After much discussion between my surgeon and medical oncologist, case brought before the tumor board and looks like just radiation. I am 53, and protocol for stage 2 is chemo and radiation, not so clear with occult primary. Braca negative, still getting further genetic counseling and 2nd opinion. Anyone else has stage 2 primary occult breast cancer with only 1 lymphnode affected? Did you do just radiation or chemo and radiation? Like this message board because I'm a rarer type and have been looking for info and not found until this board.
  • moderators
    moderators Posts: 8,067
    edited October 2014
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    Dear Dennyvol, welcome
    to Breastcancer.org. We're sorry you have to be here, but glad you found us!

    You have joined a terrific
    group of supportive and knowledgeable people who can offer wisdom, information
    and their own experiences. You may also find articles of interest on our main site www.Breastcancer.org by using the Searcgh function there.

    The Mods.

  • kirklandgal
    kirklandgal Member Posts: 33
    edited October 2014
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    Hi Dennyvol -

    Sounds like you are even rarer than most of us - while Occult Primary Breast Cancers are rare, I think it is even rarer to have just the one lymph node.  As I look back through the posts, the vast majority of us were found to have more than one positive lymph node at surgery.  Given how unusual your case is, you might consider getting another opinion or two from other area breast centers.  Most insurance companies not only cover the cost of a second opinion, but some actually encourage it.

    I can understand what your treatment team is thinking in their recommendation.  From everything I read about Occult Primaries, it sounds likes the prognosis is slightly better than for someone who had the same nodal disease but had a detectable cancer in the breast (which makes sense).  It sounds like they are looking at your unique disease rather than treating you as a standard Stage 2. 

    Another question - are you HER2 positive?  If so, you should get Herceptin even if you don't get chemo!  

    Good luck with all of the tough choices!  Keep us up to date about what you end up doing!

  • dennyvol
    dennyvol Member Posts: 9
    edited October 2014
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    I am not Her2 Positive, I am also getting a second opinion from another cancer center, genetic counseling and a mammoprint.  I did fight to not go with the standard Stage 2 treatment with chemo, because my surgeon didn't feel it was necessary with only one lymph node, but I can change my mind, if my mammoprint is high or my genetic history reveals something genetic that might lead me to masectomy or chemo or both.  The first month was so stressful because of all the unknowns and the rarity, thanks for starting this post and I'll keep updating so I can let others know about the prognosis.  I am Estrogen positive, Progesteron positive and Her2 negative and have stopped taking hormones and after radiation will be on Arimidex for 10 years. 

  • dennyvol
    dennyvol Member Posts: 9
    edited October 2014
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    Just an update, I am awaiting radiation and even the 2nd opinion doctor said because of the size of my breast cancer in my lymph node, 3mm in only one lymph node, it looks like I can forgo chemo.  Anybody have experience with radiation?  It will be six weeks, 5 days a week, then Arimidex for 10 years, I am 53 years old and feeling lucky, but there is no guarantees.  My insurance paid for every single test ordered which ruled a lot of other stuff out, which I'm grateful for.  I'll keep you primary occult breast cancer friends updated.

  • dennyvol
    dennyvol Member Posts: 9
    edited November 2014
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    Hey all,

    I am on day 14 of radiation and unfortunately it's not as easy as I thought it would be.  I'm having pain in my left arm where the lymph nodes were removed and not enjoying the swelling of the breast that caused them to keep me still on the radiation table for 30 minutes each 2 days in a row, so I've finally had my cancer moment at the hospital where I was being treated and it wasn't pretty.  Everybody talked about the burning (which I haven't experienced) but not the pain, when they redo your set ups.  Also my radiologist is hardly ever at the location, so looking back I would have gone to the other center, hindsight is good.  Anyway, just wondered if anyone else had issues with radiation.  I'm counting the days and had to up anti-depressants and take an anti-anxiety to muddle through.  Looking forward to the two day holiday from work and radiation this week. 

  • alicki
    alicki Member Posts: 85
    edited November 2014
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    hello,

    may i enquire as to how they found the cancerous lymph node in this setting?

    Just wondering

    Thanks

    Alicki

  • kirklandgal
    kirklandgal Member Posts: 33
    edited November 2014
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    Hi Dennyvol -

     

    I'm probably not the best person to help you through radiation but I see that no one else has replied.  I had problems with radiation that I don't want to get into.  The best place to go for answers is your radiation oncologist - make sure you get a chance to see him!  It's not right for you to be going through this without adequate answers and supervision.  Also, you can look for a group in these discussion boards that is going through radiation right now and they can help support you through it.  I'm so sorry you are going through this!  My thoughts are with you!

  • dennyvol
    dennyvol Member Posts: 9
    edited December 2014
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    Hi Kirklandgal,

    I am through, thank God and the worst issue besides the pain, was not being able to see my radiation oncologist, even upon request.  I do have a follow up visit with him on January 20th and he will be getting face to face feedback.  I saw who ever was on rotation, which was a total of five doctors and my assigned radiologist only once.  Anyway, I guess I can be glad I didn't have chemo and radiation, because radiation, although I was able to work all except one day, was not that easy.  Luckily he is not one of the doctors that I even follow up with except I think this one visit.  Nice guy but NO COMMUNICATION.  Hope your holidays are good, I'm glad to have a break before Arimidex starts the end of the year.


     

  • ladyb1234
    ladyb1234 Member Posts: 1,237
    edited January 2015
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    Kirklandgirl, it had been a while. I am finished with Chemo and prepping for rads. I found out today duing my simulation that the RO only wants to do 25 rad treatments. In my research it seems the standard is 6.5 to 7 weeks where mine will be only 5 weeks. Can u let me know with no tumor being found if you had the standard? Thanks and hoping all is wrll with you.

  • kirklandgal
    kirklandgal Member Posts: 33
    edited January 2015
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    Hi LadyB - Congrats on being done with Chemo! 

    I also did 25 rad treatments - each with 180 mGy (total of 45 Gray).  I had 45 Gy to the breast, 45 Gy to the Clavicular field, and a little under 45 Gy to the Axilla (I stopped the extra axillary dose early because I was worried about getting lymphedema in my arm ... so I probably got closer to 42 Gy there).  The rad onc recommended 50 Gray but I chose to go with the lowest amount I could get away with (50 Gy would have taken 28 days instead of 25).  Because I didn't have a lumpectomy site, there was no where for them to give a "boost" of radiation to - those who have had lumpectomies get a few extra days focused directly at the tumor site.

    I hope that helps!  I'll be thinking of you!

  • MimiL55
    MimiL55 Member Posts: 84
    edited January 2015
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    LadyB-I also have occult primary with lymph node metastatis. I had 28 rad treatments as well to the entire breast, super clavicular and axilla. Like Kirlandgirl said, since there was no tumor, no need for boosts. I'm sure your RO has a great plan laid out for you! My skin held up really well all during treatments, I used the Calendula cream and at the end some aquaphor. After treatments for a couple of weeks it still "cooked" so to say so it was worse then, a little gray and peeling but nothing really bad and I am really fair skinned. Just remember to take care of yourself and take it easy. I worked all through chemo and rads, would do rads over lunchtime and by the end the fatigue was pretty bad, but I managed. Did mostly nothing in the evenings after work but rested. You will make it through this, hang in there!

    Mimi

  • ladyb1234
    ladyb1234 Member Posts: 1,237
    edited January 2015
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    Kirklandgirl and MimiL, thanks so much for your quick response and explaining the regular vs. boosts and dosages. It allowed me to ask my RO better questions. Sounds like our ROs are giving us similar treatment.

    Taxol was a bear for me so I hadn't really researched Radiation yet due to the Taxol roller coaster I was on. I am receiving a 3.5 week break between final Taxol and first Rad due to the level of fatigue I had with Taxol and becuase fatigue is one of the most common SE with Rads. I am relaxing and resting up. My Rads will occur in the morning before I go to work, so hoping that schedule works out.

    Thanks for the support and encouragement!

  • dennyvol
    dennyvol Member Posts: 9
    edited February 2015
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    Hope the radiation is going well.  I have Stage 2, occult primary breast cancer with lymph node metasis and also had 25 treatments.  The radiologist who was missing in action literally never discussed why he reduced it from 30 to 25, but I got told by the radiologist of the week at the hospital.  There was a big disconnect since my radiologist rarely goes to the hospital.  Anyway, the middle to end was not good with the fatigue and pain and my little "cancer moment" with the disconnect, but the result was really good with hardly being able to tell I've had anything.  I relayed all this to my radiologist afterward and he just summed it up to the hospital, but my feedback was also to him and the lack of communication throughout.  Good news, I don't ever have to see him, not even after a year, I'm done.  I will get my follow up mammogram end of this month and hopefully still will be cancer free.  I did end up getting a little extra attention because of the primary occult from my surgeon and my oncologist, not my radiologist though, I guess too many cases too little time.  Thanks all for the explanation of not having the boost, never got that!

  • dennyvol
    dennyvol Member Posts: 9
    edited April 2015
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    How did the radiation go?  Hoping you're doing well.  I'm post radation 4 months and glad. 

  • ladyb1234
    ladyb1234 Member Posts: 1,237
    edited April 2015
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    Hi Dennyvol, I am 4 weeks post Radiation. I had a huge "skin" melt down at the end and last week my skin really began to heal -- still tendor and sore but healing. I also had my Lymphedema (LE) flare up during rads. My RO was very good at getting me into an LE PT before, during and after RADs to manage the LE. I am still very fatigued but what I am told that is due to the skin healing and just what we have been through for 9 months. How long did it take before "fatigue" was not an issue with you after radiation?

    I am glad you are doing well and that we can now both look at our treatment in the rear view mirror.

  • dennyvol
    dennyvol Member Posts: 9
    edited April 2015
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    It took about 2 or 3 months after to feel less fatigued.  I didn't have chemo though, so just radiation.  I still have a little soreness under my arm where they took the lymphnodes out, that gets sore at night.  I don't even have to go back for any more visits to the RO, which is good because although he is nice, I really don't think he was available when I needed him, so hopefully I'm graduated.  I have a low white blood count so my MO is keeping tabs on that.  Each day further out feels more normal, but like my MO said when I mentioned my left breast (lumpectomy) feels heavier and looks different, "It will never be the same".  Gotta love it, cause as long as the scary "occult thing" never looms there again, I'll just have to learn to accept it as is.  Hope you're doing better a little bit every day. 

  • edwsmom
    edwsmom Member Posts: 270
    edited August 2015
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    HI all,

    I came across this thread and wanted to see if there was anyone else out there who had an occult primary or if those who had posted before might share how they are doing/how treatment went.

    An enlarged lymph node was found in my mammogram. Biopsy - carcinoma. MRI, PET/CT - all clear. They didn't see anything else anywhere besides the one node. I am triple positive.

    I start chemo (TCHP) on 9/17, then mastectomy, then radiation/Herceptin....

    Anyone still out there?


  • ladyb1234
    ladyb1234 Member Posts: 1,237
    edited September 2015
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    Hi Edwsmom, I am 5 months out of treatment and 4 months into my 10yr timeline with Tamoxifen. I am doing well. Had ny baseline mammogram in July and all looked fine. I will have my next 3 month visit with my MO next week.

    My Bc was also found due to several large lymph nodes that appeared on the mammogram. After a few MRI's they did not locate a breast tumor only cancer in the LN. I did not have Mastectomy nor neoadjunt chemo since there was no lump . Others my want to weigh in on this. Please let me know if you have any specific questions that I maybe able to help with. So happy that all your scans were clear.

    Have you joined the Sept 2015 chemo group? If not I suggest that you do. It will provide awesome support and invaluable information as you go through your treatment.


  • edwsmom
    edwsmom Member Posts: 270
    edited September 2015
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    Hi ladyb,

    Thank you for writing. I hadnt yetmet anyone yet with a similar do.

    Yes. I've joined the September group. I start chemo this coming Thursday.

    I'm meeting with another oncologist this week for a second opinion before I start treatment.

    My MO/BS team has recommended first this round of chemo, then mastectomy on that side. It's interesting that your treatment was different, though I wonder if my triple positive status plays a role in that.



  • kirklandgal
    kirklandgal Member Posts: 33
    edited September 2015
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    Hi Edwsmom - Sorry you had to join us here. I am now more than 2 years since my diagnosis - dx 1/21/13 with triple positive occult breast primary, 4 positive nodes (with minimal disease). I sought opinions from 3 surgeons prior to my treatment - all of them said I didn't need a mastectomy. You might want to try a second opinion from a surgeon to make sure it's needed. They said that they recommended radiation to the breast which would be as good as mastectomy in this setting.

    If anything, I wish I had done less treatment than I did. I had a lymph node dissection for my surgery (no surgery on my breast since there wasn't a lump to remove). My chemo started out as Taxotere, Carboplatin, and Herceptin but after 2 doses I was changed to Taxotere, Cytoxan for 4 more doses (plus the Herceptin) - the change was made due to neuropathic pain which continued to worsen throughout the treatments and now is unbearable. For Radiation, I had coverage of my breast, axilla, and paraclavicular area - the pain never went away in my radiation field and I have a painful/itchy skin eruption in the upper part of my radiation field that won't go away.

    If I had it to do again I would do the same surgery but wish I'd stopped my chemo earlier due to the neuropathic pain (I believed them when they told me it would go away after treatment). I also wish I hadn't done the paraclavicular field for my radiation. My life has been ruined due to my complications. It's a terrible story to tell to someone who's just starting the process ... but I wish someone had warned me ... everyone just told me the good stories so I thought I just needed to get through the year then everything would be ok again. Given all of the complication I had, I'm quite happy not to deal with all the potential complications that can come with breast reconstructive surgery.

    These are difficult choices to make. Don't hesitate to get a second ... and even a third opinion if something doesn't seem right to you. I wish I had consulted another oncologist when my neuropathic pain started ... I suspect a different oncologist would have told me to stop chemo earlier rather than placating me. I also wish I had gotten a second opinion on the radiation. The only treatment I got enough opinions on was the surgery.

    Good luck to you!

  • det1975
    det1975 Member Posts: 2
    edited September 2015
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    Hi Ladies! I also discovered my cancer in an axillary lymph node. I say I discovered it, because I was the one who found the lump, but it was discovered after a biopsy on the node. The mammogram showed nothing and the ultrasound at the time only revealed the nodes as a problem.

    I was sent to a regional cancer center, and after further testing (several biopsies, a PET scan, Breast MRI and mammograms with ultrasounds) began treatment for breast cancer. Still no primary site. I had chemo, bilateral mastectomy and radiation.

    Initially the first group of IHC tests done showed ER and PR as negative. HER2 was positive. Tests done at the cancer center had the PR as positive, the ER negative. So that means I am also able to take Exemestane.

    I finished my treatments just over a year ago, except for the Exemestane. The doctors have been following me very closely and all my test results have been clear. My doctor calls them "boring" with a great big grin on his face.

    This is an area where so much is not known as this is a very rare cancer. Each decision on treatment is very personal. Just be certain that you are well informed and feel good with the treatments you choose. Each one has potential downsides and you will have to be the one to live with or manage them.

    Praying for you as you begin this road...or these chapters in your story. Hoping for very good endings :)

    Debbie

  • det1975
    det1975 Member Posts: 2
    edited September 2015
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    Hi Ladies! I also discovered my cancer in an axillary lymph node. I say I discovered it, because I was the one who found the lump, but it was discovered after a biopsy on the node. The mammogram showed nothing and the ultrasound at the time only revealed the nodes as a problem.

    I was sent to a regional cancer center, and after further testing (several biopsies, a PET scan, Breast MRI and mammograms with ultrasounds) began treatment for breast cancer. Still no primary site. I had chemo, bilateral mastectomy and radiation.

    Initially the first group of IHC tests done showed ER and PR as negative. HER2 was negative. Tests done at the cancer center had the PR as positive, the ER negative. So that means I am also able to take Exemestane.

    I finished my treatments just over a year ago, except for the Exemestane. The doctors have been following me very closely and all my test results have been clear. My doctor calls them "boring" with a great big grin on his face.

    This is an area where so much is not known as this is a very rare cancer. Each decision on treatment is very personal. Just be certain that you are well informed and feel good with the treatments you choose. Each one has potential downsides and you will have to be the one to live with or manage them.

    Praying for you as you begin this road...or these chapters in your story. Hoping for very good endings :)

    Debbie

  • March-on
    March-on Member Posts: 1
    edited September 2015
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    hi pamdo-

    Just diagnosed in June 2015 with Stage IIIC, triple negative BC. No primary breast tumor can be identified. Lymph node involvement in axilla and supraclavicular area. I've completed 5 treatments with TAC with 1 remaining. The question now being discussed between all of my doctors is do they remove the lymph nodes above my clavicle if my PET scan shows complete response following my last chemo. They are planing on removing the axillary nodes.

    Do you or anyone else have any feedback on this issue

  • moderators
    moderators Posts: 8,067
    edited September 2015
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    Hi March-on-

    We just wanted to welcome you to our community here at BCO! We're sorry for what brings you here, but we're glad you've joined us, and hope you find the support and advice you're looking for!

    The Mods

  • ladyb1234
    ladyb1234 Member Posts: 1,237
    edited November 2015
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    March-On, so sorry for the late response. This thread disappeared from my favorites and this is one thread I try to watch since it is a rare presentation and I Want to help and support as much as possible.

    I don't have an opinion on your question. What was your decision? Did you get a second opinion or find help on another thread?

    These are difficult choices we face and throughout this journey don't hesitate on getting a second or even third opnion if something doesn't seem right to you. Remember you are the captain of your ship and all others aboard because we invite them on. Get the best crew for you from your doctor to your support group.

    Hope you are doing well! Thinking of you as you travel this journey.

    -Angie
  • marijen
    marijen Member Posts: 2,181
    edited November 2015
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    Kirklandgal THANKS!! For the heads up. Getting path report tomorrow to see if they found my missing primary with a lumpectomy that removed IDC 4mm area. Also axilla dissection. I did not want the clavical radiation they have planned. I will get a second if I need to. Just read through the whole topic. Will come back with results.

  • Sultana
    Sultana Member Posts: 3
    edited November 2015
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    I also have no primary, I was diagnosed with high grade DCIS in October 2014. January 2015 I underwent a lumpectomy and a sentinel node biopsy where one showed a 4mm metastasis. A further 10 were removed which were all clear, although breast cancer there was no indication that it came from the breast. I had 12 weekly Taxol and radiation to the whole breast, axilary area and clavicular area. Radiation went well for me. I am 59 and post menapausal and have been on Armidex for just over 2 months. A DEXA scan showed that I have osteopenia and my MO has suggested I have Zometa infusion every 6 months.

  • UdiStrong
    UdiStrong Member Posts: 6
    edited February 2016
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    Hi All,

    Before I post a bunch of detail on my own Dx and txt of occult primary BC with axillary node met I want to ensure this is still an active forum? Anyone out there?

  • marijen
    marijen Member Posts: 2,181
    edited February 2016
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    Not really. I have one too. Nothing happening here. Maybe if you start a new thread but I haven't seen much activity... anywhere at bco..