Occult Primary with Lymph Node Metastases
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I went in for a mammogram and they saw a single enlarged lymph node on the scan. They did a biopsy and it was found to be carcinoma breast tissue. I had an MRI and a PET scan - nothing but that one lymph node lit up.
I chose to have BMX due to family history/genetic testing results and had an ALND. They removed 21 lymph nodes and two came back with cancer cells. The pathology found no cancer cells in any of my breast tissue (though we know the cancer originated there). It's all very strange and mysterious.
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I wonder if the scans will find it - if it's behind the sternum? I read that it could be anywhere in the upper half of the body but most probably in line with the lymph node.
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Thanks ladyb1234, marijen and edwsmom for your responses, it's really useful to know. Sounds like the main symptom is large or enlarged lymph nodes. Thanks again
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@edwsmom it sounds as if we have pretty similar presentations and course of txt. And we are also mom's of toddlers
! Your hormonal status is different from mine (I'm not her+) and you're a little further in the txt process than I. I have just finished my 2nd to last chemo (ACT) and go in for surgery 4/15 for an ALND. I posted previously to the group that I was deliberating between having BMX with ALND or BCT with ALND and radiation to left breast given that I do not have fam hx and all genetic testing is normal. I opted out for BCT after all with ALND and whole breast rxt in large part due to this paper published by the Sloan Kettering group in 2014. It is the paper that the "standard of care" for Occult primary with lymph node Mets is based on (if we can truly say that there could be a standard of care with such a rare cancer and paucity of data). But it's the best data out there. Here's a link to the paper. I would strongly encourage you to read it if you haven't already. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC432978...This paper addresses two important issues. Survival and local recurrence rates with two treatments paths (i.e. mastectomy with ALND vs BCT with ALND and whole breast rxt) and prognostic info for this type of BC. In summary, they found that women who undergo ALND with mastectomy have similar overall survival and local recurrence rates as those who have BCT, ALND and whole breast rxt. In other words a less invasive/radical surgical approach is just as good as a more radical approach with mastectomy. In your case, however @edwsmom, you have a strong fam hx and something in the genetic panel so I whole heartedly would have opted for mastectomy as well. I was still considering it even in my situation. The ONLY prognostic info available at this time to those with our dx is related to the number of lymph nodes found positive after surgery as you will see outlined in the paper. The authors found that hormone status did NOT have a significant impact on prognosis but only # of positive lymph nodes. In your case you have two nodes which means you have a more favorable prognosis! I'm not a medical doctor nor am I dismissing the concern over the response to TCHP chemo but from the standpoint of positive lymph node status you have a more favorable prognosis than a person who had more than 4 lymph nodes according to the current data! I think your MO could have given you that positive piece of info!
You will also note in the paper that ~1/3 I believe of women who did have their breast tissue removed had no cancer found. So who knows what happens? It's indeed very strange...does chemo zap it, does your immune system attack it in the breast but some cells escape to axilla? There are some theories out there...but that's besides the point. As far as neoadjuvant chemo is concerned there is some debate going on and how it can make "the waters murky." Meaning for pathology after surgery since you've already treated with chemo but in our case I think it makes a whole lot more sense to treat systemically first with chemo since the cancer is in our lymphatic system in a regional lymph node and you want to make sure you "zap" everything that could possibly be "floating" out there.
I feel like I ranted a lot. Really what I'm trying to get across is that I think the treatment you have had is the right one for you and there's good news in the fact that you had only two positive lymph nodes! You will also get additional cancer zapping with the radiation to the axilla. Aggressive screening and imaging will be pivotal going forward. I hope this came across as positive
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Udi Strong,
Thank you SO much for writing all of that out. I'm going to read the study in full.
You seriously made my day.
My BS did tell me that there was no difference in outcome found between Mastectomy + ALND and ALND with radiation. You're right that I chose to go more aggressive due to family history (my cousin has had a metastasis since her lumpectomy 7 years ago, and I'm kind of willing to do anything I can to possibly avoid that - fingers crossed).
I was absolutely not told that the number of positive nodes found impacts future prognosis. I'm very grateful that only 2 were found (we only knew about 1 before surgery). That's good to know and makes me feel a bit better.
I start radiation on Tuesday - a little nervous about it. Mostly the grueling schedule and worry about the fatigue I keep hearing about.
Thank you again!
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That makes me very happy :-)!
I hear your concern about rxt. The schedule is tough but truly in comparison to chemo it is typically much easier to tolerate overall apart from the fatigue towards week ~4 and some possible skin burnout. I used to work at a radiation center as a dietitian. Most folks faired well with Rxt :-).
Positive thoughts and prayers your way!
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- I had a swollen lymph node (2.7cm right axillary) discovered thru mammo/Ulltasound. Nothing else showed up in breasts. I had the node biopsied and it was positive for breast cancer cells. Followed that with breast MRI , ct scan of pelvic, abdomen,chest and whole body bone scan. Aetna wouldn't approve PETscan. All tests were negative. (Yay! And phew !) Getting ready to have a contrast enhanced Spectral mammo in a few days.
Oncologist is advising neoadjuvent chemo: taxotere and carboplatin
W/Targeted therapy: Herceptin & Perjeta (ER+ HER2+) every 3 wks, 6 cycles. Supposed to start by end of Sept
Re-eval with tests/scans to determine type of surgery next , if still needed
To be Followed by radiation .
Herceptin for a year.
Still looking out for the hidden cancer, but on here is the first I heard of "occult" cancer. That's weird that neither dr mentioned that. Sounds like that's what I have since we haven't found anything other than the node. I've only been diagnosed 2-1/2 wks ago, but so much has happened already my head is spinning. Afraid to make the wrong decision in haste , scared to death to wait!! I'm surethat's how everyone feels. Scary. They said it's rare but glad to connect with others in a similar situation, where we can learn from and support each other!
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Welcome HopefulYogi, not the place you want to be but a wealth of information here on these boards. I am a Brit living in Dubai in the UAE, but follow the American medical system here.
I also did not hear of Occult cancer until I read these boards and like you my doctors did not mention it either. I had a routine mammogram where they found 'high grade' DCIS, I had a lumpectomy and during the operation as a matter of course they took the sentinel node, there attached to the sentinel node was another node which after a biopsy proved positive for breast cancer, I had an axillary clearance, but no other node was positive, but cancer in the node was a different cancer from what was in the breast, which was as originally thought pure DCIS. I went on to have 12 weeks of Taxol, followed by radiotherapy, I had a FISH test for HER2 which came back negative so I am on Arimidex. The doctors were and are at a loss as to how to treat me as after numerous scans cannot find the primary, they have explained that this is extremely rare but they are continuing to monitor me with regular scans, tests etc.
It is scary stuff, but as you will read from other boards, it does get better once you have a treatment plan in place. For me the most difficult decision was whether to do AC chemo after taxol, my MO went to a board of oncologists to discuss my case and it was 50/50 whether I should or not so she left the decision to me. I choose not too and just went with my 'gut feeling' at the time.
Good luck, it is all "doable" the worse is the unknown.
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sultana,
Ugh the unknown is so scary!
My mystery continues.... Had my enhanced contrast mammogram to day and no cancer lit up in my breasts at all ( which is great and is consistent with previous mammo, MRI and U/S). But for some reason the rt axillary node that is swollen and biopsied (FNA and core) positive for breast cancer cells did not light up at all either. Very weird and puzzling. They did some more U/S testing todayand really went over the right breast for quite a while while propping pillows under my back/shoulder to really get in there. Then head of radiology dept came in and did U/S again herself. Now they "think" they are seeing a hint of something down deep in the breast. So tmrw I am going in for a rebiopsy of rt axillary node and a core biopsy of the rt breast.
I'm so confused by it all. Hate waiting the 2-3 days for results!!
Good luck to you, and thank you for reaching out.
Btw, how are you feeling now???
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Goodluck HopefulYogi with the biopsy and any other tests/scans at least they are being thorough and once they get to the bottom of it all they can work out a treatment action plan.
For me there has always been a suspicious area in my spine, so at the end of the year (12 months since my last one) I am to have a PET/CT scan to compare with the last one, I am unable to have an MRI as I have metal in my body from 2 hip prothesis and a badly broken elbow. In the meantime I am having 6 monthly Zometa to cover all eventualities especially as the bone density scan after chemo showed I had osteopenia.
So for me nearly 2 years on I am still not clear and still playing the waiting game. I can deal with it all in between my 3 monthly appointments (unless I have any bad aches and pains and then my mind goes into overtime), then the anxiety builds before each test, scan and appointment.
I hope you get the results soon.
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Hi, I found a very large swollen lymph node in my right axilla. I had US and biopsy and the node contained ductal cell carcinoma. This was on May31 of 2016. I had mammograms then of two suspicious spots but both were negative. Then I had MRI mammograms and there was one "something" that looked suspicious but the biopsy of that spot was also negative. I had something on the nipple surface that showed on the mammogram so a punch biopsy was done to rule out Pagets. That biopsy was also negative. I had completed full body CT scans and bone scans somewhere in that time period and all were negative. The cancer cells in the lymph node were tested and they had no PR or ER receptors but were strongly positive for HER2. My treatment plan is to treat the lymph node cancer just as though it was found in the breast.
I am one week away from finishing my neoadjuvant 12 weeks of targeted therapy. I am receiving Herceptin, Perjeta and Taxol every three weeks and on the off weeks, I only receive Taxol. The enlarged axillary node is no longer palpable and my oncologist says that with my particular cancer we can use the word cure now that we have the targeted therapies. I lost my hair about the eighth week and in the beginning I had some nausea and diarrhea but they prescribed Phenergan and Immodium and as I learned how to use those, the only side effect was fatigue. The fatigue got worse with each treatment and this last week I have very little stamina. Part could be that my rbc and wbc counts are down so I am anemic. I will get about a month to get some strength and blood cells back and then I will get surgery one the +node.
They tell me they will remove the node and do a frozen section during surgery to look for residual cancer. If there is none, they will check two more nearby nodes and if they are clean, that will be it. Depending upon what they find, I may get radiation to the node area. Due to the type of cancer and the effectiveness of the targeted therapies, there is no need to remove the breast. I will get increased scrutiny for follow up just as in any breast cancer.
This has been a very strange journey for me but overall, I feel very fortunate. First, the Herceptin and Perjeta are very new and if had been diagnosed even two years ago, I would not be in such a fortunate place. Also, if my cancer had been found in my breast, I may have needed a mastectomy. I am also fortunate to live in Houston where there are several major cancer treatment centers on the cutting edge of research in cancer. My neighbor across the street from me is a MD,Phd. breast cancer researcher with MD Anderson Cancer Center. I could not have been in a better place. I wish you a safe and effective journey thru this and if I can help, just ask.
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Thank you for posting the link to the article from Sloan Kettering. I read it with great interest.. Something that might be able to increase hope for some is that the latest data analyzed for the article is 2006. A lot has happened in cancer treatment since then with new treatments that were not available then so the good news has gotten even better.
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Here is a link to final published version of the article linked above by UdiStrong:
This page includes a list of "Citing Literature" at the bottom of the page (click to expand).
This is a direct link to the pdf version.
BarredOwl
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sultana- sorry for all the anxiety and worry you have to go thru with the tests. Hopefully things will continue be clear. Stay positive!
I just had a suspicious spot in my right breast biopsied, but it came back negative. Right axillary LN is adenocarcinoma BC positive. All other MRIs, cats scans & bone scan negative. So we proceed with original plan. Just got mediport put in Thurs and first neoadjuvent chemo (TCHP) will happen this Friday.
HattieHouston: your story sounds familiar and encouraging. My doctors say how rare it is to have BC only in the lymph node. Was this a more common situation in a big hospital/cancer center that you are in? My Drs also say how fortunate that I will be able to receive the Herceptin and Perjata as well.
Sounds as tho your fatigue was really bad. Where you able to work at all? That's one of my biggest fears - not being able to work! Are you on Neulasta
Do your Drs feel that in your situation with the cancer cells only in LN at this time that it makes you any more/less at risk for recurrence? Good luck with the upcoming lumpectomy.
I hate that any of us have to be in this situation at all, but it is a little less scary when you can connect with others going thru similar scary stuff and share your experiences and ask questions.
Thank you guys for sharing! ❤️
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Hopeful yogi,
My oncologist said that sometimes the body fights off the cancer of the breast but not before it sends out a cell to get captured in the lymphnode where it takes up residence. He did not say anything about any difference in prognosis. I will ask him next time. I missed some days of work but I only work 3 days a week. I missed most of the days during all my diagnostic testing where my schedule was so erratic and I had no control over it. Once I settled into treatment every Friday, I was able to be productive until the last 3 weeks when I had the treatment paused due to fluid build up. Had to get some more testing and more cardiology appointments I missed 2 treatments meaning I went without treatment for 3 weeks. During this time I missed some days work due to having retained so much fluid I could barely walk. I did not get Cisplatin as you list you are getting so dont know how that compares.
I have not had Neulasta. Im typing this while getting my 12th and last treatment. My wbc count is 3.88 and this is a low as it has ever been during treatment. It came down very gradually and while I was off treatment for 3 weeks, the wbc rebounded nicely. My hemoglobin is 10.3 and I dont think they plan to give me anything to boost my cell counts. Herceptin and Perjeta are both listed as main side effect if fatigue. I am very weak right now, but improved now that they were finally able to get the fluid off. I usually weigh 157 and I had enough fluid to weigh 170. Today I am at 159 so I am almost back to square one on the fluid. I think the doc said these side effects of the chemo are reversible.
My doc spoke of our situation as very rare but he recalled a case he had where the patient refused treatment for her breast cancer and she came back several years later with no sign of her cancer. Her body apparently took care of it.
Im also glad we have this community to share with and rely on. Sometimes I like technology!!!
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HI ladies,
I was diagnosed with IDC triple + breast cancer after a lymph node looked enlarged on a mammogram. After a biopsy on the lymph node that found it was BC and malignant, I had an MRI and PET scan but they were unable to find any cancer in the breast.
I saw breast surgeons at two NCI Cancer Centers and after getting their advice decided that between the occult cancer combined with some family history of the disease I was going to do bilateral mastectomy with lymph node removal. I completed 6 rounds of TCHP, then surgery and then radiation(as a safety measure since they never found theIn addition to the breast tissue). During the mastectomies they removed 20 nodes and two were found to have cancer cells. They did my reconstruction with implants at the same time.
It's a few weeks shy of a year since I completed chemo. I'm having surgery to remove my port in a couple of weeks. I feel very good and am optimistic.
The only thing bothering me is that the tamoxifen I'm taking has caused weight gain which causes me stress (I need to reduce my weight to prevent recurrence risk) and discomfort (I don't want to be this heavy).
Anyway....soldiering on. Trying to set up a new exercise regimen to see if that helps with the weight issue.
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Edwsmom, I dropped almost 30lbs during active treatment. Kept most of it off the first year. I excerise regularly and lift weights and I still gained almost 20lbs back. I was stressed and had to change my eating habits and switch up my excerise routine. I added yoga again and it seems to help melt the pounds away.
Good luck and as my MO states keep adjusting until you find a routine that works for you. Again mine seems to be yoga. Just walking and treadmill didn't quite get me there
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Getting into the final phases of neoadjuvent chemo (2 more TCHP to go). Need to meet with surgeons to determine what surgery will follow the chemo. Breast cancer cells in 2 rt axillary lymph nodes, no trace of tumor in breasts. The lymph nodes have reduced in size by about half at the time they were tested after 2nd chemo treatment.
Just don't know what way to go. The info on occult primary is so sparse and so outdated. So stressed right now. I don't have the family history but I mostly just want to get rid of every bit of my breasts so I don't have to worry. But I'm not sure that means I still don't have to worry. And I worry about the magnitude of that surgery if I don't really need that right now. They say radiation for sure no matter what surgery. Won't that make any later surgery that much more difficult to heal if I didn't do BMX now?
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Hi Hopeful,
I had the exact same conundrum. I got a second opinion, which I did find helpful. My breast surgeon was pushing me to just have the axillary dissection with radiation, but I just couldn't get my arms around the idea of leaving the breast tissue there when we knew that the primary tumor had to have been there at some point. To me it seemed like a mistake to go through this year of treatment and leave the breast tissue there.
There's really no way of knowing if they got everything out, but I opted for bilateral mastectomy because I felt it would help me sleep better at night to know that I did all that I could to prevent a recurrence. I do have a family history - though those women did not have an occult primary and chose lumpectomy, they had recurrences/mets.
Anyway - you have to make the decision that's right for you. My breast surgeon was against me choosing bilateral mastectomy (she said I need to treat the cancer I had, not a potential future cancer), but I'm only 44 and have a 4 year old, I really wanted to do all that i could. The second opinion breast surgeon suggested bilateral mastectomy for my case. Both surgeons were at NCI cancer centers.
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edwsmom- thanks for sharing what you have been through.
I have met with breast surgeon at MDA. My case had been presented to tumor board there. Recommendation is to remove lymph nodes only. They say the chemo has already reduced the nodes so it's working, I will have rads , Herceptin for the rest of the year and Arimidex hormone therapy for 10 years. They say chance of recurrence is less than 10%. They had me also talk with a plastic surgeon regarding possible mastectomy ( thought originally that's what I wanted no matter what) and I will be talking to Rad onc about whether rads will be only under arm for lymph nodes or the right breast also, if I go with the node only surgery.
After hearing about the difference in the surgeries, amount of drains, length of time under anesthesia , recovery time, and time off work and supposedly the same outlook... I'm definitely even more confused and uncertain than ever. ( btw. I'm 52, widowed , with one, recently college graduated daughter.
)Anyone else who's been in a similar circumstance, please share your story. I could use all the input I can get! Last chemo scheduled for Jan 19!! Can't wait for this phase go be over. I want so badly to be able to eat and enjoy food again!!
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HopefulYogi, after a second and third opinion I opted to not have a mastectomy. Well I should say I was highly encouraged not to and agreed after weighing the information and options I was given based on my diagnosis. I have to say they searched high and low for any signs of cancer in breast and didnt find anything. I went through several scans at separate Medical facilities. My initial stance was cut them both off and now. But time,research and understand outlook based on my personal information helped me make the decision and feel comfortable with it. I do admit at times I wonder if I should have had the mastectomy and begin to second guess but quickly put those thoughts to rest.
Please understand your options and do what is best for you based in your diagnosis.
Hoping you the best and that you reach adecision that you and your medical team feel comfortable with.
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Thankyou ladyb1234, for sharing your experience.
Wondering for those of you that had lymph node dissection surgery, did you have radiation only in the under arm area or did they include the breast or breasts in radiation treatment? Going for a radiation consult this week so I will be asking them., but curious how Things were handled for others.
Thanks!
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There are earlier post between me and Kirkland girl where we talk about radiation. Since I didn't have a mastectomy I had whole underarm, whole breast. chest wall and up to my sub-clavicle due to the number of nodes I had that were cancerous. I have to say radiation was worse for me than chemo. But I think my body Finally broke down.
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Hi all. This seems to be a pretty quiet forum but I am thankful to find it at last! I was dxd with bc but it only presented in my lymph nodes under one arm. An MRI found no breast tumors but a PET scan showed numerous bone and liver mets, which means I am Stage IV from the first dx. This means no surgery. I was put on a targeted therapy of Ibrance and Letrozole, which is a daily pill, and have been on this regimen for 13 months now. I will continue this until it no longer works. About 9 months into the regimen, a new PET scan showed all of my mets have resolved, meaning they are no longer present and/or active, and my markers are now in normal range. I am not cured, this won't happen in Stage IV, but the cancer is stopped (for this month anyway) and I am able to function. The ses of my medications are increased fatigue, some nausea, low immunity, alopecia, and some diarrhea, but it is all manageable. I have read the notes on this forum with interest because I was scared at first that just taking the medicine alone was not aggressive enough, but my results are good and I now have relaxed a little. I am a "managed cancer care" scenario instead of the harder hitting surgical/chemo/radiation scenario of times past. I just wanted to share in case someone else here shares my same journey.
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IntoLight, I am so happy to hear that you had such good results.
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Intolight this is a quiet forum as not many cases present occult. With this said someone does try to respond when a new sister posts.
I am so glad that you have had good results with your treatment! Also, so glad you posted to share with others who have or will share your same journey.
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Hi all! I've been diagnosed with occult Primary with Lymph node metatases. After various testing - mammogram, ultrasound biopsy, CT scan and breast MRI, no tumour or cancerous lump was found in the breasts. My tumour is in my lymph node and pathology has identified it as being breast cancer. I'm currently undertaking 6 sessions of chemo FEC-T after which it has been agreed that my lymph nodes on the left side shall be removed. Here is where I really confused. The ball is in my court as to whether I should opt for mastectomy or breast conservation. I shall behaving radiation therapy after surgery. My breast season has stated that the odds re prognosis are the same. Many a time mastectomy have been carried out and once tested at the lab no cancer was found. I'm so confused. Any advice/experiences will be really appreciated. Thanks my dear friends.0 -
Akire, welcome to our most special club, very unusual cancer. It is a shame you had to join! To answer your question, I was diagnosed in 2013 with occult primary-only in axillary nodes. Mastectomy was not recommended to me, so I had the lymph node dissection, then 4 rounds of TC chemo, then 28 sessions of whole breast, axillary & clavicular radiation. Mastectomy kind of seems overkill in my opinion, another invasive procedure, but only you can know what is right for you. Good luck with your decision & may sail through your treatments easily ! Wishing all pain free & peaceful days. Mimi
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Dear MimiL55
Thanks for your lovely warm welcome. This is indeed a special club where I find comfort in the fact that others know exactly how I feel. Thanks for your honest opinion regarding mastectomy. I tend to agree with you. This is yet another invasive procedure which has not been recommended to me as a better option by breast surgeon and his team. My last chemo session is scheduled for end of January 2018 so I still have time to change my mind should I decide to do so. The thing is that irrespective of mastectomy or not, metastasis to other parts of the body is still a great possibility so why remove breasts if that doesn't give me a better chance of no recurrence!?? I'm reasoning this way because of the professionals opinion even though they have left the choice entirely in my hands. It's so scary to be diagnosed with any cancer but even so when it's such a rare one! On Tuesday I have my 3rd chemo session. Tough but plodding along. How about radiation? Was this very tough? Is it much worse than chemo? How long does each daily session last approximately? Please excuse me and all these questions but they are very much on my mind? I shall be having all my axilla lymph nodes on the left side removed one month after end of chemo. Is the recovery a long haul? I'm aware that complications may arise,
Thanks dear Mimi for your prompt reply. I hope that you're doing welll and wish you all the very best. I look forward to hearing from other lovely ladies with similar diagnosis. Take care. Love Erika
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Erika, glad to hear you are making it through your chemo. It is definitely not a walk in the park, but not nearly as scary as it was years ago. I worked through all my treatments, wasn't easy but managed. The actual rads treatments are like 10 minutes total.
The longest was the mapping session, laying perfectly still for that was rough. I have major back issues, so I was in tears, but after that initial time. Not bad at all.
Radiation was just exhausting. I went over lunch time & had to work an extra 30 minutes each day, but got it done. I finished on Christmas Eve, getting 2 treatments that day so I wouldn't have to come back. My doctor was very accommodating. My skin did pretty well, you will continue to "cook" even after the last treatment, that's when some of my underarm kinda turned gray & sloughed off. No open sores though. Just remember this is the time to put yourself first & let other things slide. Take care & keep us posted on how everything goes. Wishing for peaceful, pain free days for all.
Mimi
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