Occult Primary with Lymph Node Metastases
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Hi Udistring, several of us have this tagged as a favorite and try to respond since it is a rare presentation. Let me know if I can help/support.
Marijens, I apologize that I missed your post back in Nov. I hope all is going well with you.
Also by posting the thread gets bumped and others see it.
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Great! I should probably get some sleep since I have chemo in the morning and post away tomorrow while in the chair. Really happy I found this forum. I have read everything posted thus far. Thanks for the quick replies!
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Ok, see you tomorrow!
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Rest up and drink plenty of liquid/water before and after Chemo.
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This thread is a good one to read. The lack of activity is due to the rarity of the diagnosis.
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Hello <1 percenters
,It's nice to connect with others who have previously walked this road or actively doing so. I am 34, with NO family Hx of BC, and very fit and healthy (by profession a dietitian who ironically worked with cancer pts). I was dx in late November with Primary Occult BC with L lymph node metastasis. I discovered a rather large lump which was initially monitored and subsequently biopsied. As you know the diagonostic process is scary as you actually don't know where the cancer came from and where it has gone since it's in the lymphatic system. Even the initial pathology may not provide adequate information to exactly pinpoint the type of cells. In my case an initial fine needle biopsy as inconclusive with the possibility of breast, cervical, head&neck or melanoma. Core needle was performed subsequently and confirmed ER/PR+/HER-. Thankfully PET revealed cancer only in the axilla and of course MRI of the breast is negative for a breast primary. BRCA is negative!!
It was decided to proceed with neo-adjuvant chemo with dose dense ACT x 8 total primarily because of the urgency to address this systemically since it is in the lymph. I just completed my first Taxol today.
The treatment plan going forward has been laid out and 2 separate centers/tumor boards agree on the course of action which is comforting. However, I am left with 2 options to choose from and struggling to make the decision. The 2 options are ALND + mastectomy (either L breast or bilateral if I choose) OR ALND + whole breast Rxt. A recent paper by the MD Anderson group shows equal outcomes with both groups as it relates to local recurrence and overall survival. Therefore, the recommendation is for the less radical route with breast conservation since the outcomes are similar.
Initially I came out with guns blazing - lets throw everything at this nasty cancer. Chop my boobs off!!! I have a whole lot of life before me so let's do everything to minimize the risk in the future. However, in the last few days as a result of praying, soul-searching, many invaluable conversations with my MO, SO and RO; AND now this forum, I starting to feel over treating may not be best in this setting. I am getting this sense from some of you based on your posts - looking back you may have opted for less treatment? I am leaning towards NOT having a bilateral mastectomy.
I am just looking for your thoughts in this scenario. I have another 3 weeks to make a decision. Thank you in advance for taking the time to read this and respond.
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UdiStrong, if you've decided on chemo you should probably go to the chemo group for the this month? On mastectomy there are forums too. There's been a lot of talk about not jumping into that without a great deal of research. You need time to absorb all the options. Or there is the lumpectomy lounge - it's very active posting there. I would just copy and paste what you've posted so far. I'm sorry sometimes I just don't feel energetic enough for long conversations. I'm sure I'll see you out there. With me they found DCIS and removed it with a lumpectomy, plus I had the armpit lymph so I got the ANLD. And they are pretty much guessing I have IDC somewhere nearby the DCIS that might be gone with the letrozole. You should definitely be on Tamoxifen for ER PR positive
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Udisteong, I just lost my entire post 😩. This response will not be as detailed.
We are given a lot of options. I choose not to get a mastectomy after seeking second and third opinions since our presentation is so rare. I'm was given the option of ALND, chemo, mastectomy and radiation or ALND, chemo and radiation. I was not given the option to have a lumpectomy. I choose to have chemo and whole Breast radiation after tons of research, reading and getting input from this sight. I choose not to have a mastectomy as the overall reoccurrence and survivals rate was about equal as you state. I also weighed the invasivness physically and mentally of the procedure, number of surgeries required, etc. As you are doing continue your research, peruse the boards and seek 2nd nd 3rd opnions if needed to reach a decision that is best for you.
As you may have read myths and a few others who had WBR only recieved 25 treatments and not the 33 again there was no lump to target.
As Marijen states join threads of women and men that are going through the same phase of the journey with you. I found this to be the most helpful and rewarding part of my journey on bco.
Best to you and please post or PM meif you have any questions and let us know how you Are doing and the decision you make!
Hugs Angie
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I think I got the 33 because they are including the axillary and clavicle areas. RO told me even when they take out level I and level II there are nodes left behind in the fat and unidentifiable. That is why the lymph can still move from the breast
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Marijenn, interesting on the 33. Did you receive boost to the Scilla and/or superclavicle? My RO did 25 For Radiation, The treatment had coverage of my breast, axilla, and superclavicle lymph nodes area. Each treatment delivered 2 Gray for a total dose of 50 Gy over the 25 sessions. The 25 session Gy were equalient to what I would have recieved in the standard 28 sessions. Per my MO, I did not receive the additional 5 boost because I did not a tumor to focus the boost on or remaining cancer in the lump nodes to apply boost too. I have to say the made sure they got the superclavicle area 😄 and it was really raw. I had a pretty hard time with radiation. I had a complete skin melt down on the Breast, back, underarms and superclavicle. I barely made it through the 25! My RO almost stopped the treatments early. I had extended time off from work to recover.....
Love this site as i love to see and read the different treatment plans and reasoning.
I hope you are doing well with your radiation treatment?
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I'm getting five boosts to the surgery site (lumpectomy). If it gets too hard, I am the squeaky wheel. Not above making a fuss. Only on #4 tomorrow. I don't do pain well. Will let you know
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Ah I see, I missed in our exchange that you had a lumpectomy. Now I understand the additional 5 boost. I am with you I was a loud wheel during my treatment (smile)
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thanks so much for your quick reply in going to see my gp later this morning not taken my tamoxifen this morning going see what he advises as I have five years to go and can hardly walk with the other tablets I have taken over five years also I have breathlessness with tamoxifen more like a panic attack. Hope all is going well for you regards Sandy x
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thanks so much for your quick reply in going to see my gp later this morning not taken my tamoxifen this morning going see what he advises as I have five years to go and can hardly walk with the other tablets I have taken over five years also I have breathlessness with tamoxifen more like a panic attack. Hope all is going well for you regards Sandy x
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Thank you Marijen and Ladyb for the responses. I'm in the same position as Ladyb - no option for lumpectomy as there is no identifiable tumor. Honestly I'm trying purposefully not to expose myself to too much posts because I feel like our presentation is so different and therefore the decision making process different than other BC. At this very moment I just want to make the decision for or against mastectomy. I've made it through the most horrendous part of chemo - AC and just started Taxol which so far is treating me so much better and I'm so grateful. I have a two year old girl and the hardest part was not being able to do much with her in the last several weeks. I'm definitely like i said moving in the direction of no mastectomy. I reached out to my surgeon to confirm that all the lymph nodes go from the axilla and she said yes. I'm surprised to read per Marijen that some lymph nodes may be left behind??
Ladyb do you mind sharing both your experience after ALND (were all nodes removed?), recovery time etc. as well as radiation experience? You can pm me if you wish. It just sounds like we have a similar situation.
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UdiStrong, I did not have a tumor - I had DCIS, not quite the same. No cancer cells were found in my DCIS that was removed or in any of the surrounding tissue. Primary tumor is unknown, aka occult.
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Hi Udistrong, feel free to PM me for more detail.
I had an ALND on 7/11/14. I had 18 lymph nodes removed of which 8 were found with cancer. My Breast surgeon feels she got most of the 1st level if I remember correctly. I took a little longer to heal as I became to active to quickly. So my drain stayed in about longer than originally planned. Almost effected my chemo start date. Well radiation I didn't fair so well. I actually worked through chemo but went out on disability during radiation. My take my body had reached its limit and fatigue just took over and I had a skin melt down. However please remember everyone's experience is different. I also did 25 sessions at a higher GY than the standard 28 sessions. There are others that I know faired well during radiation. I Was out for about 8 weeks after my last radiation. Once my skin began to heal it healed rather quickly. My problem was extreme fatigue. My RO was very specific in ensuring she radiated the superclavical due to the number of positive nodes I had. I also had my ALND before chemo. I had a choice and choice before chemo. If I had to do it all over I think I would have had surgery after chemo just to see the reduction in the number of nodes and response to chemo.
Hope this helps, but PM me with any specific questions.
You will be in my thoughts,
Angie
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Hi all,
I was diagnosed in August with an occult primary breast cancer. I'm also triple positive and have some family history.....both my aunt and cousin (her daughter) were diagnosed in their 40s (like me). I did not test positive for BRCA 1/2 but I did test positive for a gene variant of "unknown significance".
Because my diagnosis is so rare it's been tough feeling confident about treatment decisions. My case has been discussed at the tumor board meeting three times now. I'm being seen at an NCI cancer center in a major city.
My breast surgeon wanted me to have ALNd with radiation. My MO disagreed and pushed me to have ALND, mastectomy and radiation. I had a second opinion with another highly regarded BS who felt that due to my family history and the gene variant,she felt I should go with ALND, BMX and radiation.
I finished 6 rounds of TCHP chemo and I'm 4 weeks post surgery (ALND and BMX). They were able to do everything in one surgery including reconstruction with implants. I'm healing well and hoy I don't have to have more surgery.
My post surgery meeting with the BS was frustrating. My pathology report said that no cancer was found in either breast, and I did not reach PCR. I had two nodes found with cancer cells. 21 nodes were removed. The pathology report was a bit vague in some areas. I'm still trying to get some info about a comment made that the cells had broken through o e of the nodes.
Met with my MO this week - another frustrating meeting. What no one really wants to say is that it turns out that my doctors are not very happy with my response to the neoadjuvent chemo (TCHP) since malignant cells were still found in 2 lymph nodes after surgery. I guess many people get a full response. Those two nodes (along with 19 others) have been removed. We can't know what/how much was there before chemo (if the chemo killed some but not all...or if it didn't do much). We don't know if any cells made it out of that area.Makes me very frustrated to not be able to have answers to things like that. Since my cancer is unusual(triple positive and an occult primary) I couldn't even get my MO to have a conversation with me about future risk of recurrence. She told me my cancer was too unusual. I was basically told that we are doing all the treatments we should according to the latest research and I should just go home, forget about it and live my life.
I was asking several questions trying to better understand the pathology report and she said something to me like, "you're in remission, ok?" Said to me in a frustrated way. I told her that was the first time anyone has said anything like that about my situation and got emotional. No one has said anything positive. I think all I've been wanting is someone to say something positive about my chances.. And even said that way it felt like a punishing statement not a celebratory statement.
Anyway....I'm wondering if anyone else was told anything about future recurrence risk? Anyone else triple positive and have an occult primary'? If so I'd love to talk about your experiences and what you've learned. I can't find much research out there.
I start my first Herceptin only infusion tomorrow. I'm still healing from my surgery and I should start radiation in 3-4 weeks. They had to postpone my radiation simulation because I'm not healed enough yet from my surgery.
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how could you know the size of your IDC if it's occult? I would be really upset with a BMX with no trace of cancer. And your nodes still positive after chemo. Something is wrong here
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The cancer found in my nodes was identified as IDC and triple positive.
I guess what I'm talking about is that they throw all these numbers at you and then later tell you that they don't really mean anything. For me it was that upon my first MRI and PET scan they identified a single lymph node with carcinoma that measured 3.5 cm (nothing found in either breast). Then the MRI that I had at the end of my TCHP chemo showed that node had shrunk down to 2.4 cm. Then the pathology report after surgery showed that lymph node still had 1.1 cm of cancer cells still in there (that's not the size of the whole node) and a second node with 2 mm of cancer cells found in it (a node we didn't know about until after surgery). When I asked for thoughts from my doctors on what if any progress they felt the chemo made, they told me they had no idea that it was apples and oranges (the MRI's compared to the pathology). So that's a little frustrating. And since my cancer is unusual no one will talk with me about future risk of recurrence.
Marjien, it's a very personal decision based on a lot of factors. I'm not at all upset that I chose to have a BMX with no trace of cancer showing after chemo and surgery. I'm a 43 yo mother of a toddler. I want to be aggressive with this. We don't know what was in my breast before chemo - the cancer in the nodes came from the breast, so cancer was there in some form at some point. Plus, I'm triple positive. Plus, its unusual to have a family history where everyone is getting HER2+ breast cancers in their 40's. So I chose to be more aggressive in the hope of perhaps reducing my risk of recurrance, I have absolutely no regrets at all - plus I got a nice breast reduction out of it all...lol (trying to focus on a silver lining in all this nonsence).
I'm sure I'm not the only person to still have positive nodes after chemo, though I'm very, very disappointed that I did. They really hype up to you how revolutionary TCHP chemo is and how so many people are getting a PCR so if you don't, it's a disappointment without anyone able to tell you a reason or what else to do (besides we cut out the remaining cancer).
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well in that case they determined I had IDC because it went to my node. And now nodes are clear with A LD. The original node was 4.1 cm, shrunk to 2.1 cm with Six months letrozole and finall 3 mm after surgery. BS said 3mm had thousands on cancer cells. Now Getting radiation to the axilla and clavicle.
What will you do about the positive nodes?
My RO and Bs seem unconcerned they can't find primary, as the letrozole may have knocked it out. Good luck to me
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They removed the nodes during my ALND.
I start radiation to the axila and left breast area in a few weeks and I'm working on finishing a year of Herceptin targeted treatment for Her2.
I'll also start Tamoxiphen in a few weeks.
Lots still to do. I sure hope it's effective.
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edwsmom, are you signed up at Winter 2015 2016 rads? I'm in my fourth week. Wow. I can see how messed up I've been with all the typos in my last post. These days can't keep too much in my head either. Good luck with your rads and tamoxifen. Didn't see your last post until tonight. Sorry.
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Edwsmom, my MO and BS also did not focus on reoccurrence rates but on course and treatment options. . Wth this said, they were not dismissive of my questions and provided as much info, data and details as possible to allow me to make the right decision with Thierry input and guidance.
I did not have a mastectomy. My treatment was ALND, chemo, radiation and now min 10 years of hormonal therapy. Please remember you are the capitan of your ship and you're medical team (crew) is hired by you to get the best treatment possible.
Am not sure if I read your post above correct but if your MO is dismissive and addressed your question with what seems like frustration. I would remind them this is your life and you want as much detail and information as possible and hopefully you have options to ensure you get an MO that helps you maneuver this journey and gives you what you need in terms of patient Doctor relationship as they will be a part of your life for a while.
As Matijen suggest join forums where woman are in the same stage of the journey as you. It is so supportive and helpful to walk the journey with others. So I would join the radiation and Tamoxifen threads.
Good luck to you during your next phase of the journey.
Angie
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Thanks Marijen and LadyB!
I'm in kind of a little break in the process and trying to enjoy it and let myself rest. In the final weeks of recovery from my breast surgery.
I go for my radiation sim next week. Then I suspect I'll start my 6 weeks of radiation shortly after that (late March)
I started my Herceptin only treatments and have been happy that so far I haven't had any unusual reactions.
I'm not looking forward to my next appointment with my MO after the frustration I experienced after the last visit. She was indeed defensive and short with me. I don't feel that I was asking anything unusual either (to better understand the pathology report, have some context around where I fell in my response to treatment). Honestly, I just wanted to know things like was my response to treatment typical? Reassurance that I did enough/made good choices, etc.
Question - for those of you on this thread, did you make any major dietary changes in an effort to reduce recurrence? If so what did you do?
Thanks!!
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I asked for a transfer from my MO and got it today. I just read at Medicalnewstoday.com that high wbc count might be connected to recurrence. Breasthealth.org has all the dietary information. Make sure you get sufficient skincare guidance before you start rads. There is a thing call radiation dermatitis that has four stages - you don't want that. Check it at medscape.com - you need to sign up but it's a great website
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Hey ladies, apologies if this question has been asked previously but I couldn't see it anywhere, I was just wondering initially how you got diagnosed with occult breast cancer if there was no lump? What symptoms did you have? And how did your oncologist determine it?
Thanks in advance,
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I had no lump so my BC didn't show up until a big lump in the lymph node. My primary tumor is still MIA - doesn't show up anywhere, even in pathology tests.
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Lottermarine, during my annual mammogram it was noted that I had several (3) mildly enlarged lymph nodes. I was called back for an ultra sound but there was no tumor in the breast and since I had just gotten over an illness they believed them to be reactionary lymph nodes and I was told to come back in 3 months. Well I watched like a hawk and felt a lump form under my arm in a little over a months time and went back to the breast clinic. They preformed an immediate biopsy and another ultra sound. Still nothing in my breast. However a few days later I got the call that I tested positive for breast cancer. Went through a myriad of test and scans (multiple CTs and MRIs and 1 bone scan) to try and find that tumor. Still couldn't locate - nada - No luck. After extensive scanning my tumor board diagnosed me with an occult primary based on the biopsy. I had an ALND with removal of 18 lymph nodes of which 8 were found to be positive with BC.
Hope this helps.
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Wow, good thing you went back after a month and didn't wait the three! I had whole body CT and Petscan but no bone scan? Same as bone density? Which bones do they scan? All?
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