Calling all TNs
Comments
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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!0 -
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.
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Lady Miz...def push and be your own advocate!
Maggie
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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!
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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!
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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!
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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.0 -
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.
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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.)
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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.
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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
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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).0 -
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
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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
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I think you can get LE from having a mastectomy regardless of ALND.
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Jenjenl - you are correct, my dear! It can also be brought on after a lumpectomy by rads. It's a beast we just can't seem to be guaranteed an escape from!
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I am about to finish chemo on 4/2...yay and I need some advise on radiation. I don't "technically" fit the criteria to have radiation - small tumor .7 mm, 1 node that was an intra-mammary node no axilla nodes positive.
They say it's a soft call and I can in the end make the decsion. In a way I want to do rads to ensure i was as aggressive as possible but at the sametime worried that if I have a local recurrance I can't use rads again and other draw backs of rads.
Can I get some feedback or advise?
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Me personally - I would go ahead as, even though the primary tumor was small, the positive node indicates it had made its way out of the breast tissue and the nodes are what the rads are supposedly very effective in treating. Others may have differing opinions but that my thought on it.
Good luck with whichever route you decide to take.0 -
Does anyone know how common is lymphodema after a lumpectomy and radiation?
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I don't know if there are any meaningful stats. (the usual crapshoot) You might want to ask on the lymphedema forum - there are some very knowledgeable ladies there. Binney and Kira come to mind. Maybe PM them.
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Today, the outside lumen of my new replacement port would not return blood.
One good thing today...
Had my favorite chemo nurse
Happy Spring!0 -
Hi ladies re lymphoedema. It doesn't always happen straight away or even a few weeks or months. If you have had surgery like us it can occur even years down the track. That is why I wear a special bracelet that reads no IV Leurs, No BP's and no injections (ever) in the arm that the nodes were removed in. You must always be careful of that arm and make sure you don't carry heavy things with it.
Karen my port never returned blood. Perhaps thats why it eventually blew a fuse.
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argynnis: Besides shrinking a very large tumour to improve surgical options, one of the chief reasons to do neoadjuvent is to reach any possible stray cells right away and see the effects of the chemo through tumour shrinkage; the onc can then switch up a regimen if the tumour is not responding.
That doesn't really apply in your situation as your tumour is mainly gone, so I can understand the argument for completing the surgery now, then moving on to chemo. You're getting opinions from a few docs which is good; ask lots of questions and go with your gut.
The risk of LE is lower with a SNB than an ALND; and for sure the surgeon will stop there if all looks good. However the SNB could still come back + on pathology, and then you have another decision-- based on size, risk factors etc., whether to do ALND or just rads.
I know LE is a real concern (and some women suffer greatly with it), but of course it is simply one more risk we weigh off against the benefits of a treatment, which may very well save our life. (and yes any breast surgery, rads or node surgery increases the risk.)
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Happy Vernal Equinox!
We have had rain, sunshine, wind, dark clouds, white fluffy clouds, gray skies, blue skies...all in one day.
I'm ready for Spring, but Mother Nature hasn't quite made up her mind yet!!!
Think Spring! ~ Shar
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Spica - we had the same weather in Idaho - on the Palouse.
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Per my genetics counselor, insurance companies are now starting to cover the extra test that you discussed, the BART - it's a BRAC Analysis Rearrangement Test, and the genetic counselor I went to stated that as of this year insurance companies are more commonly accepting it as a value-added diagnostic for the patient, and that they have already seen the information updated on the majority of the insurance carriers now. She has a database she can go into for each insurance company, and she said it's almost not contested now. She hasn't had one claim rejected in all of this year for this additinal testing, and she said they do many each day through a wide variety of insurance companies.
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Jenjen, I feel for your dilemma. When I was DX (5/2009) I did not qualify for rads. I had 3 positive nodes and it wasn't enough to get rads. Had BMX and TAC and a successful reconstruction with implants. When a year or so went by, I read somewhere here on BCO that the recommendations for Rads had changed. I asked my Onc about it and she said it was to late and since my PET scan was clean, there was no need. She reassured me that It was OK to keep Rads in our back pocket if BC should return. That being said, I am almost 4 years out and glad that I didn't have Rads. Any treatment comes with risks and SE. Maybe a second opinion is in order? Not sure if you have done that or not. Gosh, this is scary stuff, ins't it? Do what feels right for you. wishing you much luck.
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Ok we'll here's a little update! I saw my PS today..and that area I was worried about that had bad blood flow has gotten much better! The area actually came back and just has a dry very thin brownish scab that's flaking off..he said it looks great and he doesn't and wouldn't do anything to hold up my cancer treatment...his words were "everything is healing great...you need to take care of your health...nothing I do for you is more important than your cancer treatment...start your chemo, and if anything comes up I will work around your treatment...come back in 2 weeks and if you are feeling up to it we can start your fills, if you aren't feeling well we can delay your fills..we are working on your time here and I will wait as long as you need"...so my plastic surgeon is AMAZING! I feel a million times better knowing I'm healing good and my chemo will not be delayed...oh oh and the best news...........MY FINAL 2 DRAINS ARE OUT!!!!!!! I am soooo excited and I can't wait to wake up tomorrow and take a shower finally!!!!!! Some other news about tomorrow, I have very long thick crazy hair...but I chose to get it cut tomorrow to about my chin....I have always wanted to try out the short hair, but i use my long hair as a weight to weigh down my poof....but now is the best time to try it...if I hate it ill only have it for a few weeks before I start shedding and I shave it!! So I'm terrified and excited All at the same time! Thanks for reading my rambling!
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NavyMom,
Same here, I also did not have rads. Did you have the genetic testing done?
Keke,
I adore your PS too! He sounds like mine. He totally did not have me rush my fills. If I was too close to chemo, we would skip a few weeks. It helped as well that my natural breasts were an AA and I was only going up to a size B, so we didn't need a whole lot of fills to accomplish that. I too had hair long - down to almost my waist. I cut it short, but only about when a strand fell out. Now after growing my hair, it looked good super short, but now it's in an awkward stage, so I'm still wearing my wig! I'm so excited for you and all your updates!
Lady Miz,
I was so happy to read your post that John Hopkins medical team got back to you so quickly! That is awesome that you received additional information and a good heads up on where to proceed from a qualified medical perspective.
Thinking of all you ladies and sending out extra prayers for everyone tonight.
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