TNBC recurrence in my clavical lymph node
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weimlover- how frustrating and scary! And to have to do the waiting game again when so much hangs in the balance seems especially cruel. So very sorry you are in pain and in limbo.
It’s probably possible to find out from wherever you go to get a second opinion ,if you do, what that will entail. More tests, just reviewing tests, specialists, etc. before you expend precious time and energy. Some places will do online consults. I know Dana-Farber does, but I think it’s out of pocket, just discounted.
I hope they can help with your pain And start some active treatment ASAP. Sending hugs and strength.
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Weim, Scary stuff... I have friends who are Stage 4 TN and have lived years, happily... There's a lot of treatment, plus immunotherapy did cure one stage 4 TN woman, so there's hope.
Question.. did you say you had 3cm tumors (plural) initially? Or did you mean 3mm tumors. I'm just a little confused because 3cm is considered fairly large and I'm not sure why they'd say no chemo to that size for TN. 3mm though.. that would make sense.
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Initially I had one barely 1 cm tumor in my left breast AND a 2cm tumor in my right breast. Right out of the gate, my first ever mammogram.
The staging of my initial tumors was stage 1a and stage 2 but no one else told me that. I actually just looked it up in my old pathology reports.
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Yeah, no point in regretting the past, but for newer viewers reading this... that size is definitely something chemo is warranted for with TN... I believe anything over 5mm chemo is recommended.
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Weimlover, my heart goes out to you. This disease is so unfair. It's not the news we hoped for, but there are still many treatment options available to you. I'm glad you're looking into second opinions too. Wishing you strength and healing as you go through the next steps.
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Weimlover, Thank you for the updates. I've been thinking of you. The doctors will do everything they can to get that painful area under control. It is unfair and it sucks.
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I think the doctors are doing the most important step first, treating your painful area with radiation.
You probably won't know the answer to this until after your course of radiation, but will your medical oncologist then start chemo after the radiation is done? The doctors might not know the answer to this right now either.
If you decide to get a second opinion, do you have to go in person or can the radiation oncologist or medical oncologist send your records to the second opinion doctor and do the second opinion over the phone or computer?
And don't let any doctors push you around. You can start radiation treatment or chemo treatment and still be in the process of getting a second opinion. I did. If you have to miss radiation one day to go in person to your second opinion doctor, you can do that as well.
In fact, you can freak out and cry on the phone and tell them to quit calling you, you are never going back, and they will still make you an appointment when you finally decide to go. (Don't ask me how I know this...okay, yes I did that) You can make as many appointments as you want or just keep going with your doctors for now and in a couple months when you are feeling up to it look into second opinions more.
Please know I will be thinking about you.
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Dazzling Eagle,
As a older woman in my 40ies it seems kind of cool and millennial to use peoples screen names. I only picked mine because my real one was taken. Yours is much cooler. I have a Weimaraner. I do love her but I just needed something no one had taken yet. I could care less about anonymity. As if anyone cares what I’m ranting on about here.
still love your screen name.We are going to call about a second opinion today. We actually don’t even know how to start but hey a phone call. Called insurance company and they will cover it.
So from Mississippi will I be traveling to CA, TX or MN? I don’t know yet. I’m hoping y’all will continue to help as you and buttonsmachine and cpeachymom have will your experience to give me some guidance.
Chemotherapy will begin after radiation because the one week of pain in my tailbone sacrum etc has changed everything. I’m on heavy pain meds and they have to address that first.
Why is everything taking so long? I can tell you. I live in a very poor area in the 50th state of the union and have poorly positioned myself for medical crisis. Why? Becuase I thought it was OVER.
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Lisey,
For newer reader reading this I would also like to confirm that the top post is why most women who have no node involvement should no have to use Chemotherapy.
Although I do not like to get technical but the chemotherapy request did not come to me until after the window for neo adjunctive care had passed in the words of my MO. She was waiting on my pathology which took so long that the window passed by the time she was able to present it to the tumor board after my BMX.
If your suggestion that I should have had chemo because my tumors were bigger than 5mm, and they were, then I would agree now I suppose. At the time I was told there was no evidence that chemo could help nor harm or that any cancer was in my body so did I want to take it anyway 4 months (past the window of best help) anyway?
Now what that MO recorded on her chart was that I refused because I didn’t want to lose my hair. She didn’t include that she couldn’t get the final approval from tumor board and that she waited until 4 months after surgery and diagnosis. Also both surgeons suggested there was no reason to do chemo.
So for the new people reading this post. I’m sorry I didn’t take the chemo. I knew someone would pick up on that and use that fact to suggest there was my failure as a BC patient. I should have insisted on chemo. You are right.
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Hi Weim, I think the biggest thing is the triple negative ONLY has chemo to help stop it. I had a 1.8 cm tumor, and because I was ER+ and it hasn't spread, didn't do chemo. However, ALL Triple Negative tumors - whether in nodes or not, if over that minimum size of (I think 5mm) the standard protocol is getting chemo. And while there is a window for 'optimal' effect of chemo (<120 days).. Many women have chemo 6 months after diagnosis.. In addition, while getting chemo before BMX is optimal (to see how the chemo is working on the tumor) for TN, many TNs also get chemo after the BMX... so there's no black and white window or reason why doctors should not have pushed you to do chemo given you a TN.. I would honestly look at a malpractice lawsuit if indeed the doctors dissuaded you from chemo. It is the ONLY defense for TN that there is.
Here is the guidelines for Early stage TN... The doctors should have followed it. I can't imagine you were an 'ineligible patient' (those are people with diseases that chemo would harm or kill) nor did you have a extremely small tumor (<5mm).. so your doctors didn't follow standard treatment protocol. I'm soooo sorry you are dealing with this, but you should consider getting an attorney. I am NOT blaming you.. I'm blaming your doctors for shitty care.
Early-Stage Systemic Treatment for Triple Negative Breast CancerAlkylator + anthracycline + taxane-based chemotherapy backbone for all patients.
Exceptions made for:extremely small cancers
ineligible patients
Consider neoadjuvant approach to tailor use of adjuvant therapy with capecitabine on the basis of residual disease burden at surgical excisionConsider platinum drugs if patient has a known BRCA1/BRCA2 germline mutation
Full article here: http://ascopubs.org/doi/full/10.1200/JOP.2017.022632
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Wendy- I don’t think you should take any blame. There is Soo much to learn at the beginning that we don’t even know what to push for. Most assume their docs know best. Along the way we start learning more and more. I did assume you had chemo and was surprised when you said you didn’t. Sounds like they dropped the ball big time.
None of that helps you now...but definitely don’t think anyone is blaming you!
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In the end it was my decision. I had to sign off on not taking it. I understood they wanted me to. It is not their fault. Maybe I was upset about my hair. I made a poor choice. I choose to focus on my immediate reconstruction. I wanted to walk away from cancer. My fault. Poor decision
No law suits. I don’t have time to try to look back and punish. I should have taken the chemo
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Wendy, it is very brave of you to admit that. Now, it is time to move forward and do whatever it takes to keep this in control. Don’t waste time in regret. It won’t change your situation. I am glad that you are looking for a 2nd opinion, hopefully at a NCCN facility.
I saw on your FB page that your mother had breast cancer, as well. Have you been BRCA tested? I ask only because sometimes treatment is different, based on those results. I also have two daughters and those results are important for them, as well. I wish you well and hope you keep us posted.0 -
You were under treated but there is no way to know if the chemo would have worked or not. You are blaming yourself but I am concerned about your medical care. Your doctors should have pushed it. Whats done is done and we do not know the future. I will pray for your health. A TN woman with mets in my cancer support group recently became NED. Please get yourself the best of medical care. It could save your life
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I am very sad reading this. I think it is safe to say that most of us want to beat this disease doing the least amount of damage to our bodies and that includes the loss of our hair. I believe I would have made the same choice that you made. I have ready many posts from others who did everything, including chemo, and the disease returned so I don't believe any of this is a result of anything you did or did not do. Having said that, I have a dear friend who has been dealing with triple negative IV to her bones and skull for more than 16 years. She plays golf nearly every single day and has a pretty good quality of life. I pray you have similar or even better results with your treatments.
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Weimlover, My heart goes out to you. I was diagnosed not long before you and I was in such a fog trying to take it one day at a time. I was very fortunate to have a friend that immediately guided me to the best treatment center in our area opposed to the local hospital my OB sent me. I know this is such an overwhelming process and you shouldn't beat yourself up over past decisions. I really hope you are able to get a second opinion.
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Wendy, do not blame yourself for not having chemo originally. I had Stage 2 breast cancer in 1998 and had surgery, chemo, radiation and 10 years of hormonal therapy, and now literally on my 20th anniversary of thinking I was free of cancer, I too have discovered a lump in a lymph node at my clavicle only right below it, on the same side as the original BC tumor. Unfortunately it is very large and I think I did not feel it growing because it is under the pectoral muscle which is naturally rounded, it is 30 X 40 mm! I am terrified. I am scheduled for core biopsy end of next week. So I had chemo, did everything by-the-book, and it looks like the cancer has still recurred, so don't blame yourself. You may actually have more options, having not had chemo before. You are in my thoughts
take care,
Amica
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Thank you Amica. That’s so sweet of you. I think you may be better off though since I’m at home in pain with this pelvic suscpected bone met.
I’ll have hope for both of us
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good to hear from you Wendy. I feel for you. I am so sorry you are in pain. Yes, we shall keep hope alive, somehow, through all this horrible stuff!
Amica
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Wendy - Hang in there. You're going to get through this. Sending lots of prayers your way.
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Thank you Nonomi. I want to get through this and I appreciate your words. As I sit at home with my newest journey appliance, a catheter
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Do not look back. Look forward. One day at a time. Triple negative responds very well to chemo.
My mom’s friend was stage 4 de novo triple negative with bone Mets, AC+T plus radiation to the bone and she’s Been NED for well over 10 years. Assume you will have the same response until proven otherwise.
(((Hugs)))) sorry you are dealing with this
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weimlover- How are you doing? Were you able to get a second opinion? I’ve had a catheter for a few days before, it sucks!! Hopefully you don’t have it for long.
Sending strength your way.
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Hi all.
reading your posts tonight has been really helpful. I am currently scared out of my mind of either thing potentially wrong. I am losing function of my left hand quickly and the pain and buring is spreading up my arm. so its either radiation induced brachial plexopathy or recuurence. juck either one. I have had only a emg in dec 2018 and no new imaging but they are already saying recurrence? currently trying to schedule pet ct. This hit the fan yesterday.
oh yeah my primary dr called at 5pm to say the Mayo Clinic has accepted my neurology referral. virtual puking
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miss302, I am sorry you are dealing with this. I hope they get you in quickly so you get answers. Hoping for brachial plexopathy. I developed severe carpal tunnel and cubital tunnel after treatment and it hit quickly and progressed rapidly. Surgery helped immensely.
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It was just posted on the memorium board that Weimlover (Wendy H) has passed away. I thought since this was her main post, I'd let everyone know.
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Lisey - this is crushing. Thank you for letting us know.
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So sad. Rest now Weimlover. May the love you gave your sweet daughters sustain them. Our hearts go out to you and all your loved ones.
PS - I don’t really understand this “window of opportunity” stuff for treatment. What if her initial cancer had been found four months later? That argument makes no sense except that it is someone’s CYA protocol.
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farmerlucy,
I was thinking the same thing. My tumor was large, and had probably been going for a few months at least!
Also, my MO and BS were incredibly firm about what they recommended. They would have fought me hard if I had declined. They had stats and percentages to back up all of their recommendations and were very unified and insistent. (They would probably have held me down and chemo'd me anyway, even if I had declined!) Or at least they would have said, "without chemo you will die!" I had a huge tumor and a huge lymph node and they hustled me *straight* into chemo. It was made very clear that it was the best way to save my life.
Further, it was made clear that TNBC tumors do not always respond to chemo and that by doing chemo first they could gauge the response of the cancer, and switch chemos if I was not responding. Counterintuitive, but correct. It makes me wonder how many "stage 1" patients do have lymph or v
I am so grateful to have had firm, blunt, competent doctors who gave me the stark news, and pushed/guided me on the right path.
It's heartbreaking to read this story. I send condolences and love to weimlover's family.
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Lisey- How sad. 😢thank you for letting us know.
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