Occult Primary with Lymph Node Metastases
Does anyone else out there have experience with an Occult Primary Breast Cancer? I was diagnosed this week with Breast Cancer in a Left Axillary Lymph Node but they can't find any cancer in my breast - I've had whole breast US, breast MRI, and biopsy of two small lesions in my breast that they didn't think looked like cancer but biopsied because they can't find it (and biopsy results were negative). I am still in the staging process - bone scan, brain MRI, and CT/PET scheduled. The BS said that if they don't find anything I can keep my breast and they would just do an node disecction, chemo, and radiation but I'm worried about them missing something. I would be interested in hearing what other people in this scenario have done????
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kirklandgal ~ Occult tumors are very rare, but the do happen. I had an experience where, after a lumpectomy, I was told that there were 2 kinds of bc cells in my sentinel node -- that some matched what was found, but that some cells did not. Thus my first surgeon suspected an occult tumor and recommended an mx. I decided to get a second opinion @ a much larger medical center, and I found out there that my first MRI had been very blurry, so they repeated the MRI, and -- voila! -- two additional lesions that surgeon #1 had completely missed. But the larger medical center (UCLA) didn't agree that there were 2 kinds of bc cells in my node, either.
So... what I'm getting around to is... maybe you need a second opinion, because (1) tests, if not done well, can miss things; and (2) not all pathologists agree on what they're seeing.
You may truly have an occult primary, but after my experience, I would encourage you to get another medical team to review your case -- just to see if they can find something that's been missed.
Good luck, and please let us know what happens. (((Hugs))) Deanna
PS ~ I'm not a doctor, but also seems a bit strange to me that they're not recommending a mx if they suspect an occult bc tumor.
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I find it really interesting that the repeat MRI gave more information. I am already in the process of getting a second opinion. I live reasonably close to the Seattle Cancer Care Alliance and have a consultation with their Breast Clinic next Tuesday afternoon. I wonder if they will want to repeat the MRI? My PET/CT showed nothing but the 2 axillary nodes that I already know about - they were wondering if maybe there was a cancer somewhere else in my body that had gone to my axilla but it doesn't look like that's the case.
Thanks for sharing your story! Stacie
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I didn't have a rare tumor but when I went to MDA after my intial DX and surgery at my regional center they repeated everything. New mammo/us/blood work/pathology and add in a PET scan. I go back to MDA every 6 months and the one thing they are very clear on is that regardless of whether I see an MO there all my scans need to be done there. The machines may be the same but sometimes better facilities are just better at using them. Also the general pathologist and general radiologist regionally missed stuff that the BC pathologist and BC radiologist specialists found at MDA. I definately agree with DBL that the bigger center may give you new info! Hugs and Good luck!
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Yes, I have the same.Occult cancer with primary right lymph node metastases. I have had every type of scan imaginable include a very exact CT-PET and marker tests which were all within normal range although the PET scan showed some uptake in the nodes. I had a 3.2cm node removed last month and now have had a level II axillae lymph node dissection. 36 nodes removed and 5 had cancerous cells. That in itself is a big operation that requires physio and my immune system in arm is knackered.They can't pick up breast cancer cells on the nodes but due to the fact that I'm also HER2 positive and it's under armpit, they deduce breast cancer. As far as Im concerned now, the cancerous nodes have gone.I have agreed to have radiation of the whole right breast (that also carries risks as lung just under breast bone and also it's close to ribs).I can just about cope with this but I am pretty much decided against chemo as it's so potent and comes with it's own side effects. I am going back in a week to see my onc after i have a chance to read all the literature. I didn't feel sick at all before I had my lump diagnosed and now I feel really ill due to both the operations and dealing with the future. My wound is continually bursting out with fluid and can't go far as it takes ages to stop leaking. I know it has to come out but I wonder when it will actually stop!
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MsSwiss - It sounds like you are a few weeks ahead of me in your treatment. I hope your wound heals soon! That sounds difficult to deal with.
I have been reading about all of the side effects of the various treatments. Like when you were diagnosed, I feel completely fine right now and it's hard to even think about what I will have to put my body through in the next year because of this cancer. I know that I definitely need to have a node disecction since that's where my cancer is and they also want to do radiation to my axilla when they do the whole breast radiation which, from what I've read, will increase my risk of lymphedema. I have consultations appointments on Mon with another surgeon and radiation oncologist to ask about my options.
Like you, I am Her2 Positive which apparently is a more aggressive cancer. I have also had concerns about undergoing chemo and haven't decided either way yet. I'm only 46 y.o. so everyone tells me to do everything possible and not risk it. But I've read sooooo much about the long term side effects. It sounds like after chemo, you're not the same person that you were before (postmenopausal, neuropathy, etc). I suspect I will ultimately do the chemo but, as you said, it's hard to start out feeling just fine and accept that you have to do that to your body. I thought about just doing Herceptin and Tamoxifen instead of the harsher chemo regimen (AC + Taxol + Herceptin) but I don't know if any oncologists would agree to do that.
Let me know what you end of doing. Sounds like we have a similar situation!
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For what it is worth, I did AC plus Taxol, but no Herceptin. It's not horrid. Personally, I had more trouble with the taxol than the AC, and all of it was doable.
Am I the same person? I guess it depends on how you look at it. I did have neuropathy, and I am now in menopause. On the other hand, I still do all the stuff I did prior to my diagnosis. Taking care of kids, exercising, working, hanging with my family, singing, going to sporting events, making art--all are still a go. Long-term side effects are a pain in the butt--I have lymphedema, which doesn't go away. But on the other hand, still around to do the important stuff...
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Hallo Kirklandgal - It's me again. Wot a week. Got shivers, shakes and a temp and now my whole right breast caught cellulitis.I think due to the continual poking and prodding and syringing fluid off, the skin had enough. It's really infected but after two lots of antiobiotics, the redness is starting to subside. I feel very washed out and even more tired now than before.It's because all my nodes are gone so my immune system under my right arm is knackered. Anyhow, I fought this one back and I will fight the next one.My radiation has been pushed back now until beginning of March. Am seeing Onc wed but I have complete faith in the scans I have had as they have been at top cancer centres and the radiologists are very experienced as that is what they do day in day out.Am still very reticient about having chemo due to the side effects but as I;m Her2 positive, I guess I am stuck otherwise. Am taking each step at a time as can't deal with it otherwise. I guess one question I have, is how quickly do to the cancerous cells grow if you are HER2 positive. I am still classed as occult with no primary (implied in right Breast). I see you are in Washington - my best friend lives there (I am in the UK) and had the most wonderful vacation in Seattle and Walla Walla and the shoreline. When I look back at my photos, hard to believe I had cancer at that time as I look so happy and well!!
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Hello... Yes... I also have an unknown primary.. With a 4 cm tumor in right axillary lymph node... Triple negative... I have had 4 rounds of AC chemo and my first of 4 taxol... The onc can't palpitate the tumor anymore so I am hopeful.. Dana farber in Boston agreed that removal of level I and II axillary lymph nodes is my best option after chemo... Does "survivor" refer to chemo or the cancer? This is so exhausting!
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My mom's situation is even more obscure. She was diagnosed with a malignant pleural effusion with an occult primary, but doctors cannot determine where the primary is/was. Based on family history and the behavior of the cancer, they most strongly suspect breast but cannot completely rule out the other two most likely scenarios (ovarian or lung). After being diagnosed she had 6 rounds of Taxol/Carbo, which got her to NED. The oncologist then started her on Arimidex. After a year, her tumor markers jumped up and an effusion formed again, and she is now half way through 6 rounds of Taxotere/Carbo (the onco avoided Taxol due to my mom's neuropathy). Again, her tumor markers have fallen, and she is NED. She is approaching 2 years since diagnosis.
We had never heard of occult or unknown primaries before my mom was diagnosed. I think there is another level of uncertainty and frustration when the primary is not found.
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MsSwiss - I have now joined the club of postoperative complications although my complication should resolve fairly quickly. I had my axillary node dissection and port placement last Friday as a day surgery and went home feeling great! After less than 2 hours home I had sudden onset of chest pain and ended up in the hospital with a collapsed lung. A chest tube reexpanded my lung and I'm hoping to go home soon. I'm finding the stress on my body is leaving me exhausted! And the surgery is supposed to be the easiest part of this whole process for me! I also have an abnormal heart rhythm which is acting up due to all this stress so now I'm fairly sure it will be a problem during chemo too! They have now decided to do TCH instead of ACTH due to my heart problem. Like you I am taking each step at a time and recovering from the surgery is my current step. Even when I get out of the hospital, I will have my surgical drain from the dissection for another week. I don't know how fast Her2+ tumors grow - that's a good question. They make it sound like it's quick but how quick ??? I hope your cellulitis resolve quickly! I'm sure that's leaving you exhausted.
Bethie - I am so glad your tumor has shrunk so well from your chemo. I am not looking forward to the exhaustion the chemo will bring. I appreciate your comment about "chemo survivor"!
Azul - Sorry to hear about your mom! I am curious as to what tumor markers they are following on your mom. I was told there are no tumor markers for breast cancer which makes it hard to look for a recurrence until a mass or metastasis is found. Glad your mom is NED now! That's great!
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Hi Kirklandgal, I found a lump under my right armpit after dilligent yearly mamograms and checks. Mamograms and Doctors usually don't check under the armpits. So had all the tests, biopsys and scans done. The diagnosis is Occult Primary stage 3, 4 lymphnodes involved. I have my last chemo tomorrow then modified-radical mx of right breast and mx of left in 6 weeks. Radiation to follow then hormone therapy. All my Doctors agreed surgery on right breast was a must and recommended mx on left breast. I am comfortable with the bilateral mx because I'm hoping it will prevent a recurrence or new breast cancer from happenning in the future, don't want to go through this again. From my Dr's view having chemo first then surgery is showing better results with this type of cancer. I would suggest a second opinion regarding a mx as all my doctors said it is a must.
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Hi keepswimmin,
I found the same. .. and it was clear from the pt and cat scans that the tumor was in my rt lymph node. nothing shows in my right breast and i had a biopsy on a small cyst in my left (neg) The pathologists says it is grade 3 breast cancer, no known primary. I immediately went to Dana Farber in Boston because I am also triple negative, and that is where clinical trials are happening. Saw the top Dr.s in Breast Surgery, Oncology and Radiology all in the same day, they all agreed to begin chemo to shrink 4cm tumor, then remove level I and II lymph nodes only, followed by 5 weeks of radiation in case of any microscopic spread. If after the lymph node removal the pathology finds any remaining live cancer than I will do a clinical trial chemo with the radiation. All of this treatment can be done close to home but it so reasurring that the Doc's at a top breast cancer center have told me their opinions, it will worry me for sure about the unknown, but I tested negative for the BRAC genes, so they say this is my best course. Have you had a second opinion? We all have different diangnosis so therefore different treatments!
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Kirklandgal - am so sorry to hear about your post op complications and hope you get better soon. I had 32 nodes removed - I miss them.....and 6 had cancerous cells in them. My cellulitis is almost gone and I'm starting 3-5 weeks or radiation next week (whole breast and upper chest wall). I now have a stinking cold but that is also going without ANY medication other than the odd decongestant. I am squeezing a whole lemon into water and drinking this daily. I am just about to watch the movie Living Proof about the guy who helped develop Herceptin.
I found the stress of surgery very shocking to my body physically and mentally. I did not have a drain as my doc using a special scapel to cut and burn the nodes off. Had a lot of fluid build up which either burst or was drained but last week had 15ml taken off compared with 300ml prior so this is finally the last of it. I believe it's my body expelling all the crap around the nodes and it's better out than in!!! Scar a bit lumpy and bumpy and loss of feeling under arm and back of arm (was told it would come back???) but I can live with that. I have been doing physio and strengthening exercises to music - maybe I will develop popeye muscles. Why did they do a port placement? What is this for? I hope you get lots of rest and good food while you are recovering. Will let you know how I get on when radiation starts.
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Hi Kirklangal - me too!!
docs found lump in my right axilla....biopsy showed cancer (triple negative) but couldn't find primary even after mammo, mri, needle biopsies. Did an axilla dissection removed 29 nodes - was in 9. some i upper clavicle area so was deemed stage 3c. surgeon wanted to do mammo I was reluctant...proceeded to have 15 rounds of chemo, 25 sessions of radiation to neck, breast and axilla. then I finally gave in and had mastectomy with immediate diep reconstruction. Diagnosed oct 09 completed active treatment 2010. recon in 2011. I am doing very well - but still always looking over my shoulder - monitored every 3 months for enlarged nodes in neck and lingual tonsils. So far stable....
it is very confusing and frustrating - I knew no one with occult, and couldn't get straight answers from docs on treatment - oncologist, radiologist and surgeon all had differing opinions.
I am comfortable with my decisions - wasn't easy haul, but hit it with all I could, and I'm still here!!
Feel free to chat me privately if you want...
Hugs
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I now look at my initial entry and realize just how little I knew back then. How in the world did I use the word "just" when referring to my treatment plan? I obviously was clueless!
MsSwiss - How is the radiation going? So, did you decide against the chemo? My port is for my chemo which I am reluctantly doing. I still occasionally think about refusing chemo but I'm too afraid that I'll get mets if I don't do it. I've delayed chemo until I felt better from surgery. I'm now scheduled to begin in 8 days - ugh!
Pamdo - Thanks for sharing your story! It's really great to hear from someone who is a few years out!! What kind of chemo did you do? I'm scared to death of chemo - I REALLY don't want to do it. But as a stage 3a, they say my chances aren't good without it. (Please let this be a dream!!!) I'm also curious about how hard it was to do a mastectomy after having radiation - does it make the surgery more difficult?
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Kirklandgal...
My chemo was supposed to be 6 x FEC-D - but I also have ulcerative colitis (jpouch) so the F was doing a number on what was left of my intestines...so had to switch it up. Ended up with 2 x fec, 1 x EC, 12 x weeekly taxol. The surgery wasn't any more difficult - it was a skin sparing mx with immediate diep - waited about a year after my radiation and it turned out just fine. longer to settle in...but that's about it.
As for chemo....I had no choice being triple negative - chemo is the only thing that would work, no hormonals. so we do what we have to do...it was the mastectomy decision that I had the most struggle with -was hard to see why I should remove a breast that has no tumour in....
Chemo was rough, but doable. just plan to take a good 6 months to get your strength back afterwards. I was 41 and did go through chemo pause...but my period came back after about a year after chemo. Once I got off the F, my stomach recovered ( but that was my UC that was giving me a rough time). The challenge for taxol for me was the neuropathy - they had to watch it each week, it worsened. Did do a couple of weeks with lower doseages to get through. Took about 6 months to fully recover from neuropathy. I still have no big toenailsthough...but these nailshops can do wonders - gel nails on my toes - who knew???
hang in and keep us posted on your chemo plan....
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Kirklandgal,
I posted on this discussion before but my timing and post were horrible so I deleted it. I must have been suffering from chemobrain!
Just want you to know my mom refused chemo when she was dx, she was given 1 year to live and went on to 12 wonderful more years of life, seeing kids marry and welcoming grandkids.
I chose chemo, (which they did before surgery, scheduled April 8) my last treatment was 2/21/13. This month I had an US, Mamo and MRI. This week I got the results...CLEAR! I am so blessed that I responded well, so for me it was a good choice.
We are all individuals and have to make tough choices, I am wishing you peace with whatever decision you make.
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Hi keepswimmn... Thank you for your post! We do all have different treatments but we all have similar goals.. To get thru this happy and healthy! I have my last chemo on march 29 and surgery scheduled for may 8th... Praying for a clean scan in between! None of this has been easy... But it is doable... Sometimes just practicing smiling helps me
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bethie and keepswimming - congratulations on end of your chemo!!!
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Hallo Kirklandgal.I hope you are feeling better
. I only have 8 more radiations left to do out of 25. It's a drag going daily but I did a spreadsheet of dates and sent it out to all my friends and they have been helping driving. It didnt really bother me until number 15 and then I started getting pain in right breast and itchy up to my ear (they are also blasting the right clavicle I think (towards up to my neck). The problem with me is that I have a large bust and of course gravity pulls it down which causes the pain. I have lots of acqueous cream to put on and the radiologists scan it every so often and they say it's going according to schedule. NOW to chemo. I felt sick to my stomach and couldn't sleep thinking about it and dreadful side effects. However, EVERYONE around me is trying to help, friends, nurses, work, docs etc etc. I have been to a chemo support group, a cancer hair care charity and a coffee morning - meeting everyone who are going through chemo. They want to give me 3x FEC and then 9-12 Taxol I think. I know deepdown, no one can tell me whether all the cells have been killed or not, so it's an insurance to do the chemo. I just keep thinking, it only takes a cell to mutate somewhere and it could come back somewhere else.I will have an update towards end of April when they need to put the port thing in as only have 1 good arm now so will keep you posted. I hope you are managing your chemo and resting as much as you can.
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I have read with much interest the posts here in the forum. I was diagnosed with CUP in Dec. 2012. It presented with the left axilla lymph node only. 7 nodes around the axilla were negative. My diagnosis is also triple negative. I underwent at least 10 tests, including diagnostic mammo, breast MRI, CT/PET scan, biopsies - you name it - I had the test (or so it felt). I am being treated at the Norris Cotton Cancer Center at Dartmouth Hitchcock Medical Center and I am just about done my chemo. I went every other week for 4 cycles of AC and I have completed 3 of for cycles of Taxol. I am meeting with a doctor today that would do radiation only on the left breast. They are proposing 5 minx5 days for 6 1/2 weeks. I am not sold on the radiation just yet, but am I keeping an open mind. I am going to also reach out to Cancer Centers of America and MD Anderson.
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Just wanted to update, I had my chemo then April 8 had bilateral, the path report came back showing NO cancer cells. I had 22 LN removed and right side totally cleaned out.
All of my drs were thrilled and obviously so am I. Today I found out I don't need radiation because my results were so good. I will do hormone therapy for 5 years.
This has been a tough road, but today's news has made me so very happy.
Praying for happy days for each of you as we are in uncharted waters with our type of cancer.0 -
Keepswimming, that is fabulous news. So happy to hear it.
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Ladies, I was also diagnosed with occult primary breast cancer in June of this year. After watching a lump in my armpit for about 6 months, my doctor finally sent me for mammo and ultrasound. Then a CT scan and finally core needle biopsy, which came back positive for cancer. After a PET scan which didn't show cancer anywhere else, I saw the MO who recommended axillary node dissection. 12 nodes were removed, with 11 being positive. So the tumor review board reviewed my case twice and recommended a short course of TC chemo-I have completed 2 of the 4 treatments, after which I will have 30 or so rad treatments of the entire breast, axillary and clavicular area. Chemo scared the daylights out of me but figured this treatment protocol is my best chance for long term survival. The first treatment was scary, not knowing what to expect. I had a lot of gastrointestinal issues, from diarrhea, nausea, horrible gas pains high in my chest, mouth tenderness, not really any mouth sores thank heavens, muscle and joint pain. Hair started to fall out at about 12 days, so I buzzed it shortly after that. Got a lot of cute turbans/scarves to wear and a wig from the wig bank (which I haven't worn yet-too hot). All in all this journey while frightening and life consuming and certainly one none of us would choose, hasn't been horrible. Yes I have bad times when I totally lose it, but mostly I am thankful for the advances today that give us all a chance at survival, my mother lost her battle to BC in 1979- the treatment options were so much more limited then, she was only 61 when she died. I am grateful to have a loving and supporting husband and daughter and wonderful friends and co-workers. I have gotten a lot of good advice and encouragement from these boards and am grateful. So keep strong ladies, we are fighters and together we can beat this nasty cancer!
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I have finally found the topic I have been looking for on BCO since my Drs consult on Friday, deep sigh. I was newly diagnosised with BC on 6/9 in a left Auxillary Lumph Node. The Mammogram and MRI are complete but they can't find any cancer/tumor in my breast. The Drs are calling it Occult Primary Breast Cancer? I am still in the staging process -- bone scan and MRI are clean. CT scan completed but need to redo. The BS said at this time it looks like I can keep my breast and they have scheduled a node disecction on 7/1, which will be followed by chemo then radiation. I was told I would get my staging, etc after the surgery since there is no tumor does that sound correct? I am looking for others that have had this type of diagnosis -- occult primary with first appearance in the lymph nodes and would like to hear what you have done and your experiences. I am told this is a rare presentation?
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Hi LadyB - It looks like you've come to the right place. I started this topic because I was trying to find others with a similar diagnosis. I was diagnosed 1/21/13 with a positive axillary node (found on a shoulder MRI). It was ER/PR/Her2 positive so they decided it must be a breast cancer. They looked with MRI/US/Mammo/Bx for a cancer in the breast without success so labeled me an Occult Primary Breast Cancer.
I had a Left Axillary Lymph Node Dissection on 2/15/13 that showed 4 positive nodes (one of which was the lymph node with which I was originally diagnosed). I had BRCA testing prior to my surgery - the recommendation was to do radiation to my breast without mastectomy if I was BRCA neg but to consider bilateral mastectomy (plus chest wall radiation) if I was BRCA positive due to the increased chance of having another breast cancer in the future (I was dx at age 46). I was BRCA negative so decided not to have a mastectomy. They told me that even if I had a mastectomy that they would recommend radiation which did influence my decision. I would have preferred to skip the radiation if possible. In retrospect, I'm not sure if I would make the same or a different decision if I had it to do again. But I think there is no right answer. We just try to make the best choice - but none of the options sounds good.
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Thanks for starting the topic kirklandgal! I gleened great informaiton as I read through the threads. I see this is a small group as my Dr indicated it is a rare presentation. I can't find much on it and glad to share experiences and support from others with the same diagnosis. I am just starting my journey. I was diagnosed on 6//9/14 and have my surgery scheduled for 7/1, which seems like a long time if they know it is cancer and in the lymph nodes. What was your experience with the recovery from ALND? They have told me 7/10 days off of work but actually it could take a while to have the arm get back to normal, thoughts? The planned treatment at this time is surgery, chemo then radiation.
The interesting thing is that I feel fine and would not have known if not for lump under my armpit. I guess I need to get ready for the journey as it seems like surgery, chemo and radiation my take me for a ride. But it will be worth it to get rid of BC.
Thanks in advance for your response.
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I had many complications from my treatments, including from my surgery. I had my port placed at the same time as my ALND and ended up with a pneumothorax (collapsed lung) which resulted in 3 days in the hospital with a chest tube - it is a rare complication but I seem to get all of the rare things!
I had axillary cording and breast lymphedema as a result of my ALND. My arm mobility was really limited from the cording but I was very aggressive with stretching and had it back within a reasonable range within a short while (I don't remember just how long it took but I think it was around a month). I saw a PT for both the cording and breast lymphedema. She wanted to snap the cords which I let her do the first time I saw her, but after that I decided I'd rather stretch them out. She also helped me with the breast lymphedema for which I got compression bras and for which I learned manual lymph massage techniques. Since I hadn't had a breast surgery, the breast swelling I had couldn't be blamed on post-surgical edema. I never got lymphedema in my arm even after radiation, but the radiation did make my breast edema worse, which is something I am still struggling with. I suspect breast lymphedema is much more common than is generally reported.
Like you, I felt great when I was diagnosed. I was active and healthy! If I hadn't had a shoulder MRI for something totally unrelated, I still wouldn't know about the cancer.
Good luck with your surgery - I will be thinking about you!
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Oh another thing unique to Occult Primaries - I was told they can't tell if it is ductal or lobular from a lymph node biopsy so that's a bit of information about my cancer that I never had. I would be interested in knowing if they told you the same thing. However, the ER, PR, and Her2 status are all things that they can tell you and would guide treatment decisions.
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Hi Kirklandgal, quick update. CT scan came back clear. The spot they noticed on my liver during the first CT Scan was confirmed to be a hemangioma. Spoke further with the doctor and surgery is scheduled for 7/11. My DX will be given after final pathlogoy report after surgery as the Dr. indicated information might change. The Drs have not specifically told me that they can't tell the type of cancer from the lymph node biopsy, but that is the information they indicate they don't know yet. I will ask that question specifically. I do have the information that I on my ER status.
Thanks again all for the support. Now preparing for surgery and chemo treatments then radiation, which they indicate is a must or highly recommended since the primary site can not be found.
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