Calling all TNs

TasiaB

Hi everyone just an update im 25 and was diagnosed at the end of January with breast cancer then had a right masectomy on valentines day ... After surgery found out I have stage 2a no lymph nodes involved but triple negative ... Met with oncologist last week and will be starting chemo. I will be given FEC for 3 treatments then DOX for three treatments .. Just was wondering if anyone else was on anything like this for treatment..

Any responses would be great

Thanks

Keke713

Hi TasiaB..I'm 27 and was diagnosed end jan 23rd...I had a bilateral mastectomy with no lymph nodes involved and I'm also triple negative....I don't know much about the different types of chemo, but I start mine on the 25th and I'm doing 4 cycles of A/c and 4 cycles of Taxol....I'm not sure why you would hat any diffrent than most of us ladies but I'm also not a doctor..so I'm sure he/she has a good reason for giving you what they're giving you... Sorry I can't be much hep to u except support since we're both going though this so young!

TasiaB

That's what I was wondering like I do know my mother has the braca 1 mutated gene but other then that I have no clue why I'm on this treatment .. I'm seeing a lot of people with the same treatment you are on .. I guess I will have to ask on Thursday when I go for my first treatment.

Keke713

I also curious why they didn't recommend you to do a bilateral mastectomy instead of just your left if the gene is on your family... I tested negative for the gene, but I was told by my breast doctor that if I was to test positive for it (which i eas negative) we would have to also discuss removing my ovaries since I would be at high risk for cervical cancer also...I don't want to scare you, and your treatment is completely up to you...I was in no way pushed to do the surgery...it as my decision in the end, but the doctors recommendation was important to me...was it the doctors recommendation that you only have your left removed? Or did you choose to go that path?

TasiaB

Well the thing was I just found out about my moms genetic thing ... And know knowing this my oncologist has already sent out urgent genetic testing for me to see if I have the gene and if I do he wants to talk about removing my left breast .. So once the testing and chemo is done we will talk about other surgery ..

Keke713

Ohh ok ok..good good! Well I hope you test negative for it! It's a scary thing for sure! I was a wreck waiting for the results to come back! Keep me updated if Can and stay positive :-)

Cocker_Spaniel

Titan  hip hip hooray.  You made it to four years.  Congratulations girl.  I bet you will be around for the next forty years or so.  So go party and have a ball.  Luv yer. Annie 

Hopex3

Titan...Many congratulations to you! I love your spirit and of course all your advice! I'm glad that you have remained on these boards to help us newbies through this! Thank you! And party hearty!! Whoo hoo!

Spica16

Michelle ~ you're right -we could have sung duets during that year!

Take good care of yourself, bosum buddy ~ Shar

Spica16

Titan ~ You go, Girl!!! 

but about Ohio State...ahem, I'm originally from Michigan...so you know how that goes...

Luv ~ belated Whoo Hoo!!!

Think Spring! ~ Shar

slv58

TasiaB, hi, diagnosed in jan. also. Are you in Canada or Australia by any chance? I'm in Canada and FEC D is pretty common from what I've read-that is what I'm on. Wishing you minimal SE, I have found the FEC part very doable. I start next segment next wed so can't comment yet. Make sure you hydrate before during and after and keep smiling!

GuyGirl

Titan,  Way to go.  So happy for you.

LuvRVing

Congratulations, Titan!  Wishing you many more years!!!

Luah

Tasia, welcome. FEC-D is considered equivalent to AC-T (though the E is easier on your heart than the A) and is commonly used in regions other than the U.S. Your treatment plans sounds pretty typical, imo. Good luck with it. 

Titan: Big congrats on your 4 years -- and all the life milestones you have experienced!! I can't believe how the time slips by - seems like yesterday that you were starting up this thread, which is now the only one I regularly visit. 

LadyMiz: I'm with navymom. If you're not getting action fast enough from your onc, pop in on your PCP. When I had pain in my back, mine ordered up a bone scan right away. You deserve to have an explanation for your symptoms, it's just too worrisome to be waiting so long. Hugs to you.  

TasiaB

Slv58 thank you for the response and the heads up on fec I Amin Saskatchewan .

Luah thanks for the response didnt know it was common.

Lady_Miz

Thanks Luah!

I have my question in to Johns-Hopkins and have my scans and reports with another MO for a second opinion and evaluation.  I will keep y'all posted on this latest little adventure.  Cancer - the gift that keeps on giving!

xoxo...

mags20487

Tasia..welcome to the tn bco family...I am so sorry you had to join us here at such a young age. You sound strong...go conquer!



Titan :D ♡♡♡so happy to celebrate your 4 yrs...party on girl..and open up a nicebottle of cabernet!

Lady_Miz

Well, I followed a suggestion and went onto the Johns-Hopkins Q/A service and this was my response:

"Further evaluation and biopsy (if possible) should definitely be done. If this is recurrence, therapy should start now. Would recommend BRCA testing if not done already which could influence clinical trials for PARP inhibitors. I'd get a second opinion ASAP.

Consider an academic medical center breast center for breats medical oncologist with clinical trials. If we can help, call new pt referral office @ 410-955-8964."

...and that was without even listing the symptoms I've been having - I just informed them of the nodes and their development/radiology reports since October.

I guess I need to push for a biopsy or find another doctor.  No excuses for waiting now.

...to be continued.

mags20487

Lady Miz...def push and be your own advocate!

Maggie

argynis

Hello!

I am a 28yr old that got diagnosed with triple negative end of February when they removed a presumably bening lump of 4.5cm - I just got my BRCA test reuslts and I am negative - they will now do another genetic test. Does somebody know what test that may be?

I will have a mastectomy with expander placement and lymph node biopsy on April 3rd. I am very worried that they do an axillary dissection as well if some nodes are positive as I do not want to get lymphodema afterwards. To my understanding lymph node bopsies are used for staging and to decide if chemo and so on is necessary. I read studies that said that there is no difference in survival rates for women that have no axilary dissection vs women who have. As it is already 100% sure that I will have chemotherapy afterwards I do not see the effect that this would have other than maybe removing a little more cancer cells but increasing the risk for lymphodema a lot. Do I miss something with that?

Would it not also make sense to start chemo now as the big tumor chunk is out (although with positive margins) and maybe see if the lymph nodes (1-2 may be positive indicated by MRI and PET/CT results) react to the treatmant and do a mastectomy afterwards?

Thanks!

Lady_Miz

argynnis -

I really don't know what goes into the decision to do adjuvant v. neoadjuvant chemo.  I had my surgery and sentinal node biopsy first and then started chemo but I have known others who have done the opposite.  Had i known more beforehand, I definitely would have asked this myself! This is something that you have every right to ask your doctor before everything starts and make sure you feel comfortable with ALL of the answers.  with an aggressive tumor, sometimes we have a tendency to just "go with the flow" and do what we're told without asking why certain methods are being used as opposed to others.  I congratulate you for wanting to know the "when, where, why, what and how" behind your diagnosis and subsequent procedures and treatment.

Plenty of amaxing women will be following my comments shortly, I'm sure, and maybe they will know about why one is chosen over the other.

Blessings to you and I will keep you in my prayers!

Stay strong and vigilant!

InspiredbyDolce

TITAN!!!! That's wonderful news.  Oh I hope you are doing something very special today.  I'm so thrilled to hear this!

Have a really special day x 10!

placid44

Arginnis,



I've looked into this a lot since it was my situation. It's a little complicated.



Re: "survival rates are the same...". : I believe you are referring to a study that showed there is no difference in survival between these two groups: 1) women with MICRO disease (ie less than 2 mm), or isolated cancer cells, in ONE positive node, only; and 2) women with ZERO positive nodes (ie node negative). Based on that study, in some cases surgeons are doing a sentinel node biopsy (where they take 1-4 nodes) and NOT doing an axillary dissection if only one node is positive.



It's tricky timing-wise, though, because while the surgeon gets some idea of sentinel node status while the patient is still on the table (they use a blue dye to see whether the sentinel node is positive), they don't know for sure until days later when a pathologist has had a chance to look at the nodes under microscope. In my case, while on the table they thought sentinel node was negative, but pathology then showed 8 mm cancer in the sentinel node. This is a "macro" deposit, not micro. The other 3 nodes removed were negative. So I then had to decide whether to have an axillary dissection later, when I did my mastectomy. I chose not to.



Chemo: From what doctors have told me and what i have read, you want to know your true nodal status before chemo starts (ie before chemo shrinks or changes the tumor) which means doing the sentinel node biopsy before chemo starts. If you do the biopsy after chemo, then you don't really know what stage you were. Stage affects other treatment decisions, including radiation. MRI does not definitively tell you the node status; only pathology of the nodes.



Chemo: yes, it makes sense to me to have your sentinel node biopsy (ie surgeon takes 1-4 nodes) and see how many are truly positive, then do chemo. You would not be able to see how the nodes are affected by chemo because they will have been removed. But doing the sentinel node dissection/biopsy before chemo will tell you your number of nodes and whether axillary dissection is warranted when you have your mastectomy. And maybe the remaining cancer in the breast (positive margins) can be tested at mastectomy to see how it responded to chemo? Not sure whether such a small sample would tell you anything meaningful. My tumor shrank from 3.1 cm to 7 mm from the chemo and the ki 67 (proliferation rate) dropped from 70 to 17 percent.



With a grade 3 tumor, I'm also a fan of starting chemo quickly. I did as well. Get the systemic treatment underway to kill any cells that may have escaped, then deal with local situation.



Radiation: Given that I had a positive node, in order to skip the axillary dissection, I definitely had to do radiation. Radiation helps kill any cancer in the nodes. Chemo does, too, but radiation is the extra help that in effect substitutes for the axillary dissection. I'm starting radiation next week and they'll zap 3 levels of nodes.

placid44

Clarification: They use a blue dye to show which is the sentinel node. The dye goes to the node the breast drains to first. The dye doesn't tell them whether it's positive. But sometimes they can tell during the sentinel node biopsy whether it is positive. Or sometimes it looks negative but turns out to be positive upon pathology.

Luah

argynnis: placid has provided an excellent reply. I second everything she has said. 

(I had micromets and chose to have an ALND after much consternation. Research was just emerging then showing the efficacy of rads, I might choose differently now....although I was relieved to KNOW -- through surgery -- that no other nodes were positive. I have not had any problem with LE, luckily. But be aware too that rads heighten risk of LE too.)

argynis

Thank you all for your replies!

I talked to my Oncologist and he is absolutely against starting chemo berfore mastectomy. He also said that it is the surgeons decision to do a ALND or not but I can tell him not to proceed after the sentinel node biopsy as he can't wake me up and ask me. I would definitely prefer having radiation instead of risking lymphodema.

I currently have two more opinions on that from other breast cancer specialists (both in Europe): One agrees with my Oncologist and the other one says that they would start chemo before surgery (which is also what I think would be good)

I also just heard that my abdomen MRI and my ovarian US are clear.

Spica16

Hello & Welcome argynnis,

I, too, came up with negative BRCA1/2 testing. There is a second test called BARD that they do if the BRCA results are negative. BARD is more intensely focused on certain areas of the BRCA genes to see if any positivity is picked up. When you filled out your paperwork for the testing, did they ask you about having this additional test, if needed? It is optional, and costs about $750 or so, and since insurance usually doesn't accept it, you have to agree to pay for it, if insurance denies it. Luckily, my insurance did pay for it. It also turned up negative, so barring any other genetic mutations that are not tested at this time, I do not have a gene mutation to pass on. That makes my BC "sporatic/spontaneous". One of the benefits of going through this testing is that you are kept in their database, and if any other genetic mutations are discovered (and surely there will be), you supposedly will be notified. Being so young with TNBC, insurance should be required to pay. I lucked out, because I was under 60 yrs old (57+11 mos) with TNBC, and therefore considered at "high-risk".

 ~ Shar

argynis

Spica16,

Thanks for the info about the BART - I just asked and it was already included in my test. I think they said I will have p53 testing or so.
I think my insurance pays for this second genetic test as well (I think I do not even have a copay - I have Kaiser).

Spica16

argynnis - Hooray on the other tests being clear! 

Ask your surgeon if your sentinal lymph node biopsy (SLNB) will be sent for frozen section during surgery, or just sent to pathology for later diagnosis. After the SLNB tissue is obtained, it is rushed down to histology/pathology (or in larger centers, may even be performed next to the surgical theater) in a fresh state, immediately flash-frozen, cut into extremely thin slices and placed on glass slides, stained so that the cells are visible, and viewed at the microscope by the pathologist, with the results called to the surgeon, while the patient is on the table.  This whole process is supposed to be accomplished with a 15 minute turnaround. If the SLNB is positive, then the surgeon would probably want to do the ALND with the mastectomy. If negative, then that should be all they need. Of course, as others have said, the final word comes from the pathology report done afterwards, which involves exhaustive examination of all the tissue submitted.

If the SLNB is to be viewed after the surgery, it is placed in a preservative solution, and processed the same way as other surgical specimens. The report comes out at a later time, although biopsies always take precedence over other surgical specimens.

Oh, the memories...and adreneline flow! ~ Shar, aka former Histotechnician and Frozen Section Cryostat Operator 

Deyla7641

Hi argynnis- I'm 33 and I had neoadjuvent chemo of four cycles AC and four Taxol. My tumor was 9cm. It really came out of no where. I just had my second child and was breast feeding when this big lump just formed. I just thought it was a clogged milk duct but boy was I wrong. They started me on chemo right away just because of the size of the thing. It shrunk to 4.5cm and then I had a bilateral mastectomy with left axillary node dissection because at least 3 nodes were positive. When pathology came back it was actually 9 nodes that were positive. They took out 21 total. I'm currently doing radiation and I am having some lymphadema issues arising. I'm going to be evaluated and start lymphadema treatment next month. I was doing fine until I started the radiation. I'm hoping the lymphadema doesn't get too bad but I had to have the axillary node dissection just because of how many positive nodes I had. Good luck to you and hope the info helps! Deyla