Occult Primary with Lymph Node Metastases
Comments
-
Erika, the surgery wasn't too bad. The worst part was the bandages, by the time they came off my armpit was very painful. You will have drains which are a bother , but I went back to work with them in. Feel free to ask as many questions as you want. You will find out the reality of stuff here more than wirh the medical professionals, since most of them haven't gone through the actual experiences!
0 -
Hello, I a newbie!! My mammogram found enlarged lymph node on left side. Local surgeon removed it instead of completing a biopsy. Traveled to MDA after that mistake, and am recovering from left auxiliary lymph node dissection. Will have my drain removed on monday and find out how many nodes were taken. Will also find out details on planned chemo, herceptin and radiation treatments expected. I too have had a difficult time processing feeling perfectly well to adjusting to this journey of being sick. Mystified by the fact that there is no primary source found. Have a thousand questions and have found little information matching my case. Refreshing to find these posts - so thank you. I was given same option of mastectomy but also told no improvement of recurrence so was not recommended. Questions topics include living w/lymphodema, my prognosis, and how will I know chemo or other treatments are working if I have no tumor to watch? Am I doomed to end up with another cancer or just a recurrence? I am generally a calm person, but all of my questions are driving me a bit crazy. Actually looking forward to my dr appnt on monday in hopes of getting more answers. All help is welcomed
0 -
Dera Kelli6,
Welcome to the BCO community. We are sorry for your diagnosis and glad that you reached out here to our members. We hope that you will find support and information along the way that can be helpful to you. Please keep us posted on what you learn at your appointment on Monday. PM us if we can help with navigating our site. The MOds
0 -
Nov 24, 2017 02:07PM MimiL55 wrote:
Akire and Kelli, sorry we met virtually under these circumstances. We welcome you both to this thread though short it has a wealth of information for our rare presentation of BC. I was diagnosed in 2014 with an occult primary-only in axillary nodes. I had many test and 2 MRIs. Nothing I mean nothing was found in the breast. After the first board presented my options I had a second opinion due to the rare presentation. Both boards did not recommended the Mastectomy so I had only the lymph node dissection, then 4 rounds of AC Followed by taxol then 28 sessions of whole breast, axillary & clavicular radiation. No boosters.
Akire, only you can know what is right for you. I choose to not have the mastectomy following my breast surgeon's recommendation which was support by another facilities 2nd opinion. Good luck with your decision.
Kellie, I had the same thoughts and fears. How will they know if the chemo was working? This site and joining a thread of ladies that were traveling the journey at the same time as me was my life line. I do have lymphedema which set in during my radiation treatment. I have learned to manage it. There is a thread just for lymphedema that has a wealth of information.
Prayingthat each of your treatment plans aregoing well with minimal to no side effects.
Angie
0 -
Hi ladies im sorry i found this board unit now as it would have been very helpful through my diagnostic. I was diagnosed with cancer after i had a biopsy done in March, they said it was some form of breast cancer as it was found under my axilla but could not say anything more. Long story short my mammograms did not catch anything ever neither did my blood, even after i was diagnosed with cancer, not even the MRI caught anything. They started me on chemo first, did the FEC-D treatment then surgery to be followed by radiation. My surgeon opted to not remove my right breast as he stated he did not know if that was the source of cancer or not. His fear was that cancer could reappear somewhere else but removing the breast would not change anything. He removed 14 lymph nodes 8 of which tested positive for cancer & a lump that was found under my axilla. I am getting ready to start radiation on Thursday & will be getting it on my right breast, lymph nodes & thyroid. He wants to make sure to get all those areas in case cancer comes back. as that was his fear He told me i did not need to have my right breast removed as that would not change the situation & would make things a bit worse as im heavy chested & he stated that would hurt my back. There was never any cancer found in my breast & after surgery he stated oh we found the source your lymph nodes but its still concerning as it must be triggered from somewhere else in my body . Now as i head to radiation on Thursday (21 sessions) i head with the fear of A.- developing lymphedema from my lymph node removal & B - having a reoccurance of cancer coming back elsewhere. Ladies i pray that all of us are good & that nasty C does not come back & to the ladies that are starting chemo don't be scared its totally doable & if i can give a piece of advise if you are having docetaxel in your chemo treatment get your hands iced or put in ice as that helps with keeping your nails, i had that for both my feet & hands & nothing turned black or fell off. As for the surgery & drains it was not too bad i had full movement in my arm started stretches pretty much the same day of surgery 2 months ago, was a bit sore but started slowly getting movement in my arm. I was told that even if i had pains to try as much as i could. Ladies i wish us all luck as we battle this hard battle & continue to battle it.
0 -
Hello fellow occult breast cancer warriors,
I just signed up for an account so haven’t figured out yet how to enter information re diagnosis and treatment plan so I apologize. I was diagnosed 2/1/18 Stage II, ER-/PR-, HER2+, left axillary lymph node tumor 3mm under left arm. Mano, MRI, CT/PT Scan negative for any other cancer so diagnosed in March 2018 wth occult BC (we are a small club aren’t we). Started chemo 3/12/18 carboplatin, Taxotere, Herceptin, Perjeta. Had #5 of 6 chemo rounds yesterday. Scheduled for follow up appt with surgeon on 7/11/18; an ultrasound to see the results of chemo on tumor and lymph nodes; surgery scheduled for 7/30/18. Surgeon said she will remove sentinel nodes and what remains of tumor and if biopsy is not clear then will go back in and remove auxilly nodes. Then will have radiation. I have not yet been told all the details of the radiation sessions that will come after surgery. My surgeon and oncologist have recommended against double massectomy and in favor of surgery as described above followed up with radiation. I am naturally concerned about developing lymphedema and found an article about a home therapy program after PIS technology of electrical current assesses body fluid volume that is highly effective in identifying appropriate home therapy patients to try and reduce lymphedema. So I would love to hear about any results you all have had regarding lymphedema.
After surgery I will continue on herceptin and perjeta every three weeks for the remainder of one year since I began my chemo. I am wondering if the side effects will be less on these two drugs than the full chemo protocol I am on now? Hoping my hair will start growing again while I am on just herceptin and perjeta?
I noticed my case seems to have similarities with Hopeful Yogi and would love to learn the outcome of her lymph nodes dissection surgery.
So grateful to have found this Occult BC group and again apologize for mistakes in posting my info. Best wishes to everyone
0 -
PVM and OcculBCWarrior, praying that your treatments are going well with little to no side affects.
PVM there is an awesome lymphedema thread on BCO! It helped me out a lot and still does when I have a flare-up or have questions that docs or therapist seem to just want to give the standard medical answer.
Again hope all is going well.
-Angie
0 -
ladyb1234 Thanks you so much for your thoughts & prayers i hope you are doing well as well & continuing to kick butt & kick the ugly C to the curb. I love seeing success sorties & you are definitely one of those
OcculBCWarrior hope you are doing good as well. I am going to knock on wood that so far so good with me. I do daily exercises & so far so good with my arm. I bought 2 sleeves & gloves that i have used when i have flown. The one thing i have found is that i try to live a better life & am more appreciative of things. Wishing you ladyb1234 & all the amazing ladies here lots of health & continual kicking the ugly C to the curb 0 -
hi i’ve Been absent a while due to , well .. LIFE! It’s busy and I have been feeling relatively well, thank goodness. Just checking in now as I am looking for help with hair loss due to Aromasin.
Sorry and welcome to OccultBCWarrior and all others who have the need to join this group.
- To OccultBCWarrior. Sorry this is so late in response to your post above. I hope you are doing well and not dealing with too many difficult side effects of treatment at this point. I had my lymph node dissection surgery in Feb 2017 (18 LN removed) 1 drain that stayed in 4 wks. No other problems. Started radiation in April 2017 on Rt breast, axilla, clavicle. Had very raw clavicle area by the end of treatment. Looked like raw meat, but healed great with only a freckled appearance in that area now. I took only the herceptin infusion for one year following chemo (Er+,Her2+). My hair started growing back in during that time and I had no side effects of the solo Herceptin. I started Aromasin (exemestane) aromatase inhibitor in March 2017. Side effects so far have been joint pain, weight gain and hair loss (again!? Seriously?) Most didn’t start until several months after starting. This is the 10 year pill - oh joy! I have previously had arthritis issues in back, knees and hip so it’s hard to know if my aches and pains now are from the pill or maybe it just acerbates what’s already going on there.
- I feel that I made out fairly well thru all my treatments and surgery compared to some of the complications that others have experienced. I worked with a holistic nutritionist from diagnosis and started juicing. Tired to eat an alkaline diet. No sugar. I also recommend yoga and meditation as helpful coping with all of this. And of course let your friends and family help you out as much as possible. That was hard for me but eventually just went with it. I was able to work thru most of my chemo & rads.
- Just had my 3D mammo and ultrasound this week and all is clear!!
- Sending out positive healing vibes to all.
Take good care,Hopefulyogi0 -
Your case sounds very similar to mine. I had lumpectomy surgery first, then 4 months of chemo (taxotere, carboplatin, and herceptin), followed by 33 radiation treatments. I had no side effects from the radiation. Now I am getting herceptin every 3 weeks until March. I'm just wondering what kind of post treatment tests should I be getting. I am scheduled for mammogram in December but my occult breast cancer never showed up on any mammogram. Should I insist on an ultrasound or MRI?
0 -
Your case sounds very similar to mine. I had lumpectomy surgery first, then 4 months of chemo (taxotere, carboplatin, and herceptin), followed by 33 radiation treatments. I had no side effects from the radiation. Now I am getting herceptin every 3 weeks until March. I'm just wondering what kind of post treatment tests should I be getting. I am scheduled for mammogram in December but my occult breast cancer never showed up on any mammogram. Should I insist on an ultrasound or MRI?
0 -
Bebe2: I get my one 3D mammogram and ultrasound per year. At six months I get a bilateral breast MRI, since insurance only pays for one mammo per year, the MRI gives a look at what's going on in there halfway thru the year. I also see my oncologist every 3-4 months for blood work and physical exam.
My oncologist also order tests as needed when I had complaints of joint/ back pain, which we assume was arthritis or inflammation from the Aromasin. I was glad to have the test anyway to rule out any possibility of more cancer. It’s scary... let Dr. know of any new aches and pains and get them checked out
Good luck
0 -
I was just diagnosed the same. What did you do az nd your outcome?
0 -
Hello Kirklandgal,
I have just been dx'd 5/8/19 with occult triple neg bc. This is my second visit of breast cancer. No it is not recurring BC but a new, totally different BC.
My first BC was treated at Mayo:
Malignant Neoplasm Of Breast Female Left (HCC) ER+/PR+ didn't know about HER2 back then
Modified radical mastectomy with TRAM flap 06/28/00 for two separate breast cancer primaries. One was a 1.5-cm infiltrating ductal breast cancer with angiolymphatic invasion, and the second was a 1-cm high-grade ductal carcinoma in situ without invasive cancer. Axillary lymph node metastasis seen in 1 of 16 nodes. Tumor was ER positive, PR positive. Her-2/neu untested in those days.
The patient received chemotherapy with AC and then Taxotere from 08/23/00 from 01/24/01, followed by chest wall irradiation.
Tamoxifen was provided from June of 2001, and then she was switched to Femara June of 2006 for approximately 4 years. Endocrine therapy completed.
As of 5/8/19 I have:
Site #1:
The location is the right breast.
Mammography demonstrated no abnormalities (Calcification within a lymph node)
Breast lesion 1 US demonstrated: Calcifications within lymph node.
Histology: invasive mammary carcinoma (Pathologist felt this was a high grade cancer with necrosis)
Grade: 3
ER: negative
PR: negative
HER-2: negative
Axillary node: Right
Right axillary US was suspicious.
Right FNA/Core biopsy findings: Positive
They are unable to find the primary. I just had PET/CT scan with no sign of tumors in my body. I'll have an MRI on my breast next week trying to locate the primary. Has anyone out there dealt with a similar situation?
Thank you and God Bless
0 -
My case sounds very similar to yours. I had no primary tumor anywhere. In 30 years, I never had an abnormal mammogram. MRI of both breasts was clear. The cancer was in my axillary lymph nodes. I had lumpectomy, chemo, radiation and now getting ready to start Nerlynx because I am HER2+.
0 -
BCBBadour1, My case sounds very similar to yours. I had no primary tumor anywhere. In 30 years, I never had an abnormal mammogram. MRI of both breasts was clear. The cancer was in my axillary lymph nodes. I had lumpectomy, chemo, radiation and now getting ready to start Nerlynx because I am HER2+.0 -
BCBBadour1, My case sounds very similar to yours. I had no primary tumor anywhere. In 30 years, I never had an abnormal mammogram. MRI of both breasts was clear. The cancer was in my axillary lymph nodes. I had lumpectomy, chemo, radiation and now getting ready to start Nerlynx because I am HER2+.
0 -
Although I have not been officially diagnosed, I believe the final word will be Occult Breast Cancer. I’ve had a needle biopsy of one axillary lymph node that was positive for likely breast cancer. Since then, all other tests have been negative. Negative mammogram, negative MRI. I’m headed to Dana Farber for a consult and second opinion in about a week. I’m hoping tests are done and we can finally move to treatment.
I have not been genetically tested. But I have a strong familial history of breast cancer on both maternal and paternal sides of my family. I pretty much know I want a BMX when surgery is done.
How many of you had surgery first vs. chemo first? Is one better than the other? I sense my Oncologist is leaning towards chemo first. Isn’t it harder to know how many lymph nodes to remove when surgery is done if chemo was done first?
I’ll update after my visit at Dana Farber. I’m relieved to know there are a number of us with this unusual diagnosis rather than me being super rare. But, I can understand that my local Oncologist may have not seen this very many times or at all. Thus calling in Dana Farber.
Thank you for all your posts in this thread so far. Reading them has been helpful
0 -
Snaffle53, I will be interested to know what they say at Dana Farber. Did you find out whether you your biopsy report showed your one positive node was ER PR positive, HER2 negative? That would have a lot to do with chemo being a first treatment. Some breast surgeons remove all the level I and level II nodes. Please keep us updated.
0 -
All I know at this point is that it is ER negative
0 -
Hi,
So it is TNBC - Triple negative breast cancer? Yes that is more of a problem. I had letrozole for six months prior to surgery to reduce the size of the node and to see if the letrozole was an effective treatment for ER positive. That would be the reason for the chemo first. Once the positive node is removed they wouldn't know if the chemo they chose was effective for you. When is your date at Dana Farber? And how are you doing with your diagnosis?
0 -
The ER status is all I know at this point. The appointment at Dana Farber is this Friday. I hope they don’t want more tests. I’m fine more or less, so long as we get into the treatment phase soon
0 -
How big is the node? I hope all goes well. Please keep us updated.
0 -
I’m not sure of node size. But I went back through my pathology report and see my MO ordered more tissue testing.
It seems I am TNBC. And Occult Triple Negative to boot. I’m quietly having a seizure over this. The more I read the more scared I get. Really hoping Dana Farber has answers and that treatment can start soon.
Prior to this in spite of familial history on both sides of my family, genetic testing was not advised. Bet that changes. I’ve feared breast cancer for years. Already know I will opt for BMX. I’m generally fairly tough. But this is shaking me to my core. I’m scared stiff at this point
0 -
It is all overwhelming to start. Most doctors don’t take the time or have the time to explain everything. And so we find our way here to educate ourselves and get support. There’s not much you can do to rush the process. But the good news is they have (so far) only found one node instead of a very large tumor. Do you have anymore details on your family’s history of breast cancer? You coukd take this time to document it. I would think Dana Farber would want to do genetic testing, it’s only a swab I think. Stress is not good for your health, it increases inflammation.
0 -
My paternal grandmother died from breast cancer. One cousin on my father’s side died from breast cancer. One my mother’s side, I have one Aunt and her daughter (a cousin) who both had breast cancer but neither died from it.
There are at least two enlarged and likely cancerous lymph nodes.
I’m trying hard not to be anxious. This waiting is terrible, though
0 -
So treatment for Occult TN breast cancer is likely to be the same as for TNBC. Have you joined the TNBC thread yet? There is a LOT to learn. You can also do a search on Dana Farber to read other’s experiences there.
0 -
Thanks so much for the link, Marijen…I think I finally found my tiny tribe!
GlobalGal
0 -
Hello, everyone! I am someone whose breast cancer has an "occult primary". My cancer was discovered in one very enlarged lymph node that was bursting at the seams. (I picture my lymph node wearing a flowing cape with hands on its hips!)
My cancer was ER-, PR+, HER2+, which is a strange little combo. (We even got a second opinion at UNC-Chapel Hill before starting chemo.) My TCHP chemo went from early March until the end of June. Lost my hair, and it did a number on my nails. I'm hoping I don't lose them, too! I wish I'd worn those chilling gloves and booties during each infusion...
My surgery was just this past Friday. It was not a SLND, but they did take about seven lymph nodes and had to put in a drain. We're expecting to get the pathology results next week. If no cancer is found, then I will heal up and start radiation in four weeks. (That will be five times a week for five weeks, on the right breast, right axillary, and clavicle areas.) I am a teacher, and will have to take the first part of the school year off. Just too much going on...
Well, I wanted to introduce myself, and this seemed like the best thread to do that in!
0 -
MMinNC, boy, it’s been a while since this thread has been active, so I’ll just say hello. I have an de novo occult primary. I was diagnosed Stage IV from the get go.
Please let us know the results of your pathology. I’m sorry you had to join the group. There are a lot of great women here with lots of knowledge.
0
