TNBC recurrence in my clavical lymph node
I found a lump under my collarbone. My GP got the radiologist to do an US guided biopsy the next day. Day after (yesterday) pathology comes back. It’s my original cancer which wasn’t in my neck nor my lymph nodes before. Here’s the kicker, I’m TN. I think I’m going to die. I thought it was over. My ONC appt is Monday. Ive looked up articles. It looks like my survivalist rate just plummeted.
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Wendy- so very sorry to hear about your recurrence. I know little about TN, so I can't offer any advice or consolation. I just wanted to reach out because you sound so scared, and I don't blame you. Sending virtual hugs and some strength your way. One day at a time...
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I am scared. The statistics are bad. So many of my friends and family cannot understand why I’m losing my mind when I wasn’t like this with my first dx. They don’t understand. It’s breast cancer yes but it’s totally different when it’s triple negative and it’s already spread to your lymph nodes when they find it. It grew fast. They were looking.
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I'm guessing you had chemo the first time around? I’m sitting here waiting for my Lupron injection for ovarian suppression and knowing that I’m lucky I have the options for treatment of Er+. I’ve said on this site before that I was ok with my first diagnosis, but not sure how well I’d handle a recurrence. It is a scary beast.
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I didn't do chemo the first time. I did the surgery. My tumors were small and we did a bmx. I haven't had chemo but with triple negative I'll do anything and everything they recommend to live. I just want to live with my girls and see they grow up.
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Weimlover,
So sorry to hear of this. It's scary, but you are going to do what you have to do. Bet chemo will kick ass for this now. It won't see it coming.
Try not to look at the statistics. I remember when my sister was diagnosed 9yrs ago with Inflammatory Breast Cancer. It's staged automatically as a 3, she was 3b. She looked at everything she could find on it. Of course most was not good. She is still here. She's had some scares afterwards, and still living life, has seen one daughter get married, have a baby..... You will too.
((hugs))
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Of course you want to see your girls grow up! And you know what? You’re a mom, so even though you’re not feeling brave right now, you will be brave. Because we do what we have to, right?
I agree with beach2beach, not having chemo the first time could be a good thing. All the options are open to you still. (try to find as many silver linings as You can in this mess, they might help you through the next 5 minutes)
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You had TNBC before and survived. The same will happen this time since you can do chemo. Lucky you, many TNs don't get this option. Keep us posted.
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Dear weimlover,
my heart goes out to you, I have three little girls and I had my initial TN diagnosis in February 2016. I know how you must feel.
Did your onc advice against chemo the first time? I am just curious as my tumour was only 6mm and I had full chemo protocol and BMX. I was never given a real choice.
Chemo will work well on your recurrence, there es so much around for TN as Olaparib etc. You will be fine again.
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My onc took the decision of whether or not to do chemo to the tumor board. There was no node involvement and there was no evidence that there was any remaining cancer. By the time she got back to me the window we needed to take the chemo had passed..
I am the most frightened that I am triple negative and that the cancer in in my Supraclavicular lymph node. Every thing I read seems to point to the cancer must have spread. The pet scans next week will show. In the meanwhile my whole arm is numb and hurting. That came on very suddenly overnight a few weeks ago
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Dear Weimlover,
So sorry for what you're going though. The chemo is going to be very effective. You will be there for your daughters. Stay strong. Prayers and hugs.
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First of all I would consult a TNBC specialist. If your recurrence is still considered local, chemo should work well, especially for BRCA1. I have read a few studies on TNBC that say local recurrence does not automatically mean distant metastasis for TNBC.
But I am a bit shocked that the tumour board did not give you adequate advice when you were initially diagnosed. For tumours more than 5mm in size, chemo usually is considered even when node negative.
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I was just diagnosed with a local recurrence. It is the clavicle lymph node too. The surgeon said it was not operable. I'm getting radiation to the area and resumed Herceptin/perjeta. I'm so sorry to hear your news. It's just shocking.
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Dazzlingeagle,
I am very sorry for you, too. Many prayers coming your way.0 -
Dest77, I live pretty far away from everything in Mississippi but finding a TNBC clinic to help is probably out of my financial capabilities as well. I hope my oncologist will be real with me and suggest this even if he doesn’t think I can afford it. My tumors were under 3cm very small but occurred in both breasts. I can’t beat myself up now about now taking chemo, I don’t think it will help with my current problem if you know what I mean.
DazzlingEagle, I’m afraid mine will be inoperable as well. I don’t what they will suggest to do with it. I found it myself. Mine is a recurrence though.
So nice to have replies from real women dealing with the same crisis. Especially being in a remote rural location, this website is a life saver.
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Hi dear weimlover,
Of course you are scared out of your mind right now, and not at all brave or hopeful. But please take a deep breath and then go step by step. I am not you, but I think I understand what you are going through. I found my cancer via lump in my underarm that was biopsied and came back positive for cancer...I was devastated that I had cancer that had already spread to my lymph nodes. Thought I was going to die and I was in deep panic and sadness. Also, after chemo and surgery, two lymph nodes were still positive for cancer, one with extra-capsular extension. I also have two kids who need me; when you get news like this and you start to think you are going to die and won't be there for your kids it's devastating. Then you start getting the facts, and you get a plan, and start taking steps that will take you to a better place and you will feel better. You are not alone. You are not alone. We are right here and you sure have many who love you and will be right there for you.
There is no evidence that your cancer has spread to distant organs, and it could be a regional recurrence. And you have not had systemic treatment yet. Here is hoping that this is a local recurrence and that chemo will blast that bastard out of existence.
This cancer crap is full of uncertainty but don't despair. Best of luck with the appointment on Monday. Take it one step at a time.
LaughingGull
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Sending prayers your way. Try to have a peaceful weekend. Good luck next week. Let us know if there's anything we can do. Big hugs.
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Weimlover,
I do so empathize with you. We are on a very similar timeline, and if you look at my diagnosis information you'll see my original dx was near the same time as yours. I'm also TNBC so I totally relate. I also was diagnosed with a recurrence in April. Also likely inoperable. And I am also a parent, of a teen, but she was a middle schooler when I first got the news and it's never easy. I offer you my heartfelt empathy.
The statistics do not tell your story, and I can tell you I know of not a few women with stage IV TNBC who have been living active, working lives for 5 years or more now. I am currently on Xeloda and Taxotere, and there are many clinical trials and research centers actively working to beat TNBC right now. If you want resources, let me know and I can offer a few ideas.
But of course the shock, the worry, the statistics for our type are worrisome. I hear you. This is the time for radical self care. Rally whatever resources feel healing to you, and let yourself cry and scream and fear and all of it. No time to censor or feel strong right now. Take things, in this dark forest, tree by single tree.
Wishing you love, comfort, and sisterhood.
Jojo
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Weimlover, I'm HR+ not TN, but I had TWO local recurrences, and have no sign of distant mets yet. I only say this to try to help you: now that your case is more complicated, please get an opinion from a university teaching hospital or NCI designated cancer hospital. I did, and I ended up transferring my care there. It made all the difference - I can't stress that enough. The reality is that not all doctors and facilities are equal.
Give yourself the best doctors you can find. There are ways, even if you're low on money. There are need-based programs out there. Most big cancer hospitals will have social workers, and they know how to get you connected with the care you need. Best wishes to you and please keep us posted.
https://www.cancer.gov/research/nci-role/cancer-centers/find
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Dear weimlover, I was just checking to see how you are doing. How is the pain in your arm? I wonder if a nerve is getting pressed into by the swollen clavicle area? Let us know how your next week is. Thinking of you.
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thank you for all the check ins. My MO said he feels Chemotherapy is the best option. He was very positive and upbeat as soon as he entered the room my eyes filled with tears. He wasn’t phased. He told me that after the pet scans we will know what kind of Chemotherapy drugs to use and get started as soon as we can get a port in. He told me the PARP is a targeted therapy forTNBC/BRCA patient like me. I feel better. He has plans and ideas. Path repor still incomplete to confirm cancer subtype.
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weimlover- Glad your feeling better. It’s reassuring to know there are options and you sound like you got this now!
Best wishes!
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Glad you are getting a plan together. The whole process is upsetting and sucks. And it takes so long. Hang in there. Chemo is awful but not the entire time. They will give you a "teaching session" on the treatment, the chemo. I am glad you are getting a port. I had a different targeted treatment, Herceptin and Perjeta, which I still get, and it's not nearly as bad as chemo. You have more good days than bad days.
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PETSCAN showed no cancer in any of my organs only in my lymph nodes. Weird. So many questions for my oncologist tomorrow
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Wendy. That is awesome. I am so happy for you! Congrats
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Weimlover, - I just came across this thread and see your most recent post! I am SO glad to read that PET scan was clear!! HOORAY!! Once chemo gets busy doing it's thing, you will be FINE!! Chemo is not fun, but is a do-able hurdle, you will see!
Get yourself in the 'fight mode' and think GOOD thoughts! Your family and your friends on these boards are here to support and help you on this 'journey'.
Hugs from NYC
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Wendy- with that news I hope you are now feeling Brave And Hopeful!
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weimlover-
FABULOUS news on the results. So glad to hear you now have a plan and are moving forward. Take it one step at a time. Keep us posted!!
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Glad the PET scan was clear. I know many long term survivors of TNBC which had spread to nodes. Chemo works very well for TNBC. Chemo is your friend...a powerful weapon in your arsenal in this fight. I reminded myself of that every dsu
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Chemo has been taken off the tables. I started having pain in my lower sacrum and went to the ER. The ER did CT scan and a radiologist says it looks metastasized bone. Saw the oncologist a week later when I was supposed to start chemo the next day he says no we are going to have to do radiation first because of your pain.
Now I’m in pain and on heavy meds waiting to do radiation meeting with the radiation oncologist today. I’m so frustrated. I’ve been at the clinic once every 3 months since first diagnosed. I went from a full life to stage IV in 3 weeks.
To make this even more confusing the MO says you can go get a second opinion if you’d like but of course that will delay any chemo starting.
I was at the gym everyday. I wasn’t hurting for 2 years recovered from 3 surgeries and now, I’m facing a terminal illness.
I’m having my husband call our insurance company today to see if they will cover a second opinion. My current clinic is the most reputable in a 2 hour driving distance. I guess I’ll look at MD Anderson.
If my life has turned terminal and I have mets to my pelvis plus lymph node invasion (all happening while I’m under treatment which no one noticed) then what’s the point? Will those doctors just put me through more tests? Mets are mets right? I don’t understand. I’m only 40 years old. I have 2 little girls 6 and 12. This is overwhelming
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Oh and by the way the PETSCAN was not clear. Initially what the doctor says was an are of activity they are now saying because of last weekends ER CT scan is bone mets. Of course a biopsy would be useful, my last biopsy is still not been finished from 3 weeks ago. The biopsy they scheduled is 2 weeks out. I bet they just start radiating without it. After all I’m terminal right? I can’t wait to see what new and frightening news awaits me with a new radiologist oncologist this morning.
I haven’t been able to walk around much or get out of bed without full throbbing pelvic pain. I know they want to help and I want the pain to cease too. Oh the bone biopsy has to be done in Memphis and they cannot do that for 2 weeks.
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