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I'm new and I guess "Special"

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Category: TNBC Forums
Forum Name: Welcome New Members
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Printed Date: Dec 19 2018 at 6:07am
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Topic: I'm new and I guess "Special"
Posted By: duffyzmom
Subject: I'm new and I guess "Special"
Date Posted: Mar 12 2018 at 6:53am
Newly diagnosed (March 5th) with Stage 1 Grade - 3 Tumor is only 1.6cm and nodes look unremarkable.  I guess I'm special because I'm also 7.5 years out from treatment for Stage 4 Non Hodgkin's Lymphoma that was found in the same breast as this TNBC.

Gotta love when Dr.'s keep saying you're a special case.  Gee thanks Dr.

I've had an appointment with my breast surgeon.  Who I love and had a previous relationship because she did the biopsy that found my lymphoma.   She explained the Chemo-Surgery-Radiation vs Surgery-Chemo-Radiation options.   To say I'm adverse to enduring chemo again is an understatement but I have a 50th birthday vacation in less than 3 weeks that I refuse to miss.  So she's agreed to do my lumpectomy this week and then I can vacation and start chemo when I return.

I understand neoadjuvant can have benefits but I worry waiting until after the vacation might allow the cancer to spread into the lympnodes and at least doing the surgery will start the process.  Any opinions from others?

I see the oncologist this week and am thinking I'll use that appointment as my "second opinion"  Because my lymphoma required highdose chemo, I may be limited in the chemo available this time.  If he thinks neoadjuvant is more appropriate, I can always cancel lumpectomy and reevaluate.

Sorry this is rambling.  I plan to read through the forums so hopefully I won't be redundant.  

Posted By: cheeks
Date Posted: Mar 12 2018 at 10:52am
Hi duffyzmom,

I'm so sorry about your new diagnosis and that you have already been through so much. You are apparently doing really well for having had a Stage 4 cancer ?
over seven years ago.
I will offer my opinion based on my own experience, not statistics.
I am 9 years from my first diagnosis of TNBC in my left breast. I had a mastectomy and chemo last time.
This Thursday i will be having a mastectomy of my right breast with chemo to follow soon afterwards for a new primary. So far, they have not found any genetic reason this has happened again so many years later.
I asked my cousin who is a radiologist at Mayo what would she personally do if it her? I didn't really want to lose another breast. She said to me, Take it off. No breast, no more breast cancer unless it has metastasized. TNBC is very aggressive and has no "targeted" treatment like some hormone positive breast cancers do now.So, my decision is to remove the breast, it's not being nice to me anymore. My oncologist at Vanderbilt wanted to do the mastectomy first. Other doctors might do chemo first. Ultimately, it is your decision.
I wish you the very best and hope you have a wonderful BIRTHDAY vacation.


Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.

Posted By: Kellyless
Date Posted: Mar 12 2018 at 12:15pm
Welcome! I too am "special", with my completely new yet the same recurrence 8 years after treatment. I found the worst thing about being this kind of special is that there are no studies, no tried and true options for treatment of your particular circumstances. It's especially scary paddling down uncharted waters. Since I just went thru this, I'll give you My personal thoughts and opinions - it's what I was looking for when I was diagnosed a second time - but I couldn't find any survivors to talk to!! There's another rare recurrence patient currently in treatment here too, perhaps she'll speak up as well.
My best advice is to get a second opinion from the best doctor at the best NCI rated cancer center that you possibly can - remember, they're flying blind with you, making it up actually, so as many educated opinions as you can get makes more sense than for the usual patient. #1 Step to take that may be life saving.
I 100% understand not wanting to cancel your vacation! But, I would do my best to set that aside - try to not use it as a factor - when listening your options, not let it color your decisions. Then ask what option B is, taking the trip delay and timing into account, what does that do to your risk? You only get one shot at this, so it's important.
They especially wanted to do chemo first this time with me because I could not do what's considered the front line chemo treatment plan a second time, for the same reason you may not be able to - suggested life time dosages already met. So I was left with those "uncharted waters", doing something different. Would it do the job? The only way to know was to scan regularly during chemo treatment and look for a response. This was so important that we drove 5 hours to MD Anderson for my scans every 3 weeks during treatment because they have the best scanning equipment and technicians in the world,(And even tho I was sick as a dog this time, awful road trips, but I'd do it again!) Remember, it's not really the cancer in your breast they're worried about - it is the escaping cells that travel that are too small to detect with any known testing. TNBC tumors outside the breast are rarely curable. If your chemo is killing the breast tumor, it's most likely killing your tumor cells anywhere they may be - success. Sometimes even the usual front line AC & T does not work - tumors grow instead of shrink. If you're one of those patients that need a different chemo to kill your TNBC, the only way you'd know that is to do chemo first before surgery.
My first time with TNBC I had just 2mms spread to the lymph node - wouldn't show up on scans, but I had surgery first due to a botched Biopsy the first time. Theres no scan that detects all early stage spread. The best defence for stopping the spreading is usually starting chemo ASAP. Again - not as afraid of cancer in your breast, it's the spread within your body no matter how miniscule.
Finding out just how very rare a recurrence like mine was with a lumpectomy and full on treatment proved to me that a successful lumpectomy & radiation is 100% as good as mastectomy for ultimate survival -in a first time cancer patient, with successful full front line treatment. And importantly, Only if you have NO genetic predisposition for cancer. To doctors, my unusual recurrence makes them think of me as risky a patient now as any BRCA positive patients, even tho so far they don't know WHY I've had this again. so again - despite my recurrence, I'm a firm believer in the science that says lumpectomy is as safe, but that's only in the right circumstances. Wouldn't they think the same for you - they don't know WHY you've had cancer twice in your breasts, but you have, you've grown cancer in your breasts twice now, I'd explore opinions on why they think you should do a lumpectomy at this point? Another thing both of my surgical oncologists and both medical oncs weighed in wanting a double mastectomy this time is the problem you have finding chemos you can do to treat cancer a THIRD time - your options are even more limited then, so minimizing risk becomes more vital as treatment options dwindle. Finding survivors of cancer in the breast 3+ times is way more rare than even your or my circumstance so far....above all you want to do everything to avoid that scenario, so keep that in mind as you make decisions.
Please feel free to reach out to me anytime! My recurrence was a harrowing and scary time. Having Donna and Mainy and Steve from this site helping me, listening to me....because they KNOW this disease unlike my Real Life friends and family - I will always be so grateful for their support and comfort. I hope you find that as well. We are here for you!

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

Posted By: duffyzmom
Date Posted: Mar 12 2018 at 3:15pm
Thanks Blair and Kelly,

Some great information to use when I see the oncologist on Wednesday.  

Kelly...the trip is only about two weeks away so actually getting a second opinion would be more of a delay than doing the lumpectomy and taking my trip.  Is it possible to get a second opinion following lumpectomy?  


Posted By: Kellyless
Date Posted: Mar 14 2018 at 9:15am
Absolutely!  Since you aren't probably going to do the standard, first time diagnosed at your young age chemo, there would be great value in meeting more than one medical oncologist.  Have they done updated genetic testing?  There have been many new genetic mutations relating to cancer and breast cancer in particular since your first diagnosis.  That info will be vital in deciding your next steps if you haven't already received it.  They should be able to get the results by the time you return from vaca! 
If you have issues getting into the best TNBC docs in an area you can reach for the second opinion let us know.  Steve - SagePatientAdvocate here on the board - was able to get me an impossible meeting at MD Anderson (they told me six months and I had 3 weeks before chemo had to start!) and that meeting changed my treatment plan.
Are you going somewhere dreamy for vaca? You will be in a much better frame of mind going into treatment because of it! I was hellbent on going to the beach between chemo and radiation during my first go round - best vaca ever!  I was sweating it to get my white count up high enough to travel in the limited time I had - a week on the beach with my entire family was the best medicine ever. 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

Posted By: duffyzmom
Date Posted: Mar 14 2018 at 10:41am
More great advice - Thanks Kelly!

I've been asking around in my lymphoma groups but haven't had any luck finding anyone else in my boat.  I'll ask for a referral from oncologist today and see if he thinks I need different approach due to previous lymphoma treatment and if there is any correlation.  I do know chemo often leads to secondary cancers(especially child blood cancer treatments) so maybe there are trials involving those.

I am awaiting the BRCA results but have told everyone....Please hold results until I return from trip.  

Yes, it is a special trip.  I finally convinced husband to travel to Europe.  We are doing 3 days in Barcelona and then cruising on the brand new megaship Symphony of the Seas from Royal Caribbean.  


Posted By: Tulips
Date Posted: Mar 15 2018 at 11:57am

I'm so sorry for what you are going through.  I haven't had the exact same situation as you, but I am also a "collector" of cancers!  I dealt with Stage 2 TNBC in 2015 (neoadjuvant, learned I still had residual cancer at time of lumpectomy, which helped me decide to do a bonus 6 months of Xeloda chemotherapy after my radiation....I was grateful for that information obtained by the neoadjuvant because otherwise I wouldn't have known the chemo wasn't 100% effective for me.).  Anyway, last year I had melanoma to deal with (not stage 4, didn't require chemo or immunotherapy, just surgery, but still scary and my odds of additional melanoma are off the charts for an assortment of reasons).  So I think I can relate to some of your situation!  I also had a VERY important vacation planned after learning about my melanoma, and if I did the surgery first, it would have ruined my vacation.  My doctor wanted the surgery ASAP but I ultimately chose to postpone my surgery 2 weeks to accommodate the vacation.  Maybe a crazy decision, so far so good, and I'm not recommending that, I just want you to know I can relate to how important treasured trips can be!

I totally agree with the great advice about the 2nd opinion.

But what about this possibility....even if you want to do neoadjuvant, I think many of us didn't get that sick after our first chemo.  Could you schedule your first chemo for right before the trip?  I traveled with my daughter on a plane in the middle of my chemo to California, no problem, and we had a marvelous time!!  My doctor was fully onboard with airplane travel, just take precautions.  So I wouldn't automatically rule out starting chemo before your trip.  Have your cake and eat it, so to speak.  Obviously you'd want to hear what your doctors think, but just know that is a possibility if you want neoadjuvant AND your vacation!!  Good luck, again so sorry!

Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016

Posted By: Kellyless
Date Posted: Mar 15 2018 at 2:31pm
Spain is dreamy. One of only a few places in the world i wanted to move to after visiting.The food, the people, just everything was the best. You're going to have a blast!

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!

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