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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 10:06am
Lee,
neuropothy for me I think startes after the 2nd Taxol,and yes I had both toe and finger nail problems. They both started hurting, the nail beds hurt and were sensitive. They started to grow out and fall off, my suggestion to you is keep them short so you don't catch them on anything.
Hope this helps :) btw, it doesn't hurt when falling out, because the new nail already started. You will see, if this happens to you.
I know one day I put my socks on, put my feet in my sneakers and felt sommething like what the heck is in my shoe and low n behold it was a toenail.
This too shall pass :)
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 12:17pm
Hi Lee,

I was very fortunate that I did not start experiencing the numbness and tingling until close to the end of Taxol- # 9 or 10 of 12. I did not have any nail problems until the week after I finished treatment and they hurt like mad!!! They never did fall off, but were discolored and looked like they had patches underneath where they were not attached, kind of like voids. As they grew out, there truly were spots not attached to anything. For all I know, that was damage from the A/C months earlier.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2012 at 3:36pm
Hi everyone!

TAC#3 went ok yesterday. The ativan at the beginning is very helpful for me. The only anti-nausea drugs I take are emend, dex, and zofran on days 1 & 2, but decided to drop the zofran on day 3 due to the constipation. Eating starchy food helps with the nausea. Also, I found a way to tolerate the mouth gargle with the salt/baking soda mix: I drink a little koolaid first, then gargle a few times (changing the wash out several times) then another sip of koolaid. I also am giving a try a "mouth spray" I had bought from my dentist a while ago called "breathRx" you spray it on your tongue, then scape your tongue. It is supposed to kill germs in your mouth. My mouth felt the best it has been (I also broke down and flossed, I couldn't stand it anymore), although my taste receptors are almost gone. I can taste sweet and salty, but not really nuanced flavors in between. So far, no neuropathy or other notable side effects. My neutrophil count was in the normal range, but platelets and hemoglobin low, but all other stats look pretty good. I want to maintain this so I can finish the chemo as scheduled and hopefully be NED!

Lee, I hope the taxol works on your tumor! 

Best wishes everyone, and thanks for thinking of me and all the positive thoughts. I have just tried to stay busy with housework and gardening (planted some native species to attract butterflies) in preparation for the neulasta shot, which has for me brought about the worst side effects.
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2012 at 11:09am
Hi Turtle,

Good to hear from you.  I'm glad that you found a way to tolerate the mouth wash and started flossing again.  One thing I want to pass along -- when I had my "training" at the skills lab (fancy name for those who are about to get whacked with chemo) -- they told me not use any kind of mouth wash with ethanol (I guess because ethanol will dry the mouth out).  You might want to verify that the mouth spray doesn't have ethanol. But if the spray works then that's the most important thing.

I know what you mean about tasting -- there's some weird taste in my mouth that I can't quite describe (I think some call it a metallic taste) so nothing tastes quite right. For some reason, citrous fruits and spicy foods taste better -- maybe because the strong taste comes through. 

Everyone -- thank you for sharing.

I have been so anxious about Taxol, more so than about AC.  Partly because AC have not worked as well for me and I'm down to the wire with Taxol. Although AC have so many long term side effects, Taxol seems to have a lot more immediate side effects (hypersensitive reactions, bone pain with the Neulasta, peripheral neuropathy, nail problems....).  Just focusing on getting through the next 8 weeks.

I've been reading about the synergism between chemo agents and immune response and I am hoping my immune system will kick in and fight the tumor (except with lymphocyte counts being so low -- technically I have severe lymphopenia -- I don't know how my immune system will fare).

Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2012 at 7:06pm
Hi Lee,

Just thinking of you...I hope that the Taxol is treating you kindly and that you are feeling somewhat better!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BethP Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 7:54pm
Lee, I hope you're doing well and the Taxol isn't too rough.

Beth
Dx November 21, 2011: IDC, not staged; Gr. 2 nodes, largest 2.6 cm; Gr. 3 breast 1.2 cm; neo-adjuvant TAC; lump. + 16 nodes PCR
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 9:33pm
Lee-

You've been in my thoughts...  hoping you're 'hanging in' & Taxol is working well without many tough SEs.

My very best,
Mindy
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 10:16pm
Dear Lee,

please add me to your list of wellwishers...

sending you ++++++ vibrations.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2012 at 10:30pm
Lee,

Thinking of you.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2012 at 8:30am
Hi Lee,

I just wanted to say that I am thinking of you and hope that the Taxol is treating you kindly. I hope you were able to get back some of your energy after your counts rebounded.

Wishing you the best,
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 12:11pm

Hi everyone.  It’s been a while since I last posted and I just want to give you an update.

 

DD-AC, DD-Taxol was completed on 5/14/12.  There was a week delay in starting Taxol due to low hemoglobin and fatigue.  Taxol was not a walk in the park as the med onc told me – in fact, in some ways, I tolerated Taxol more poorly than AC.  Although I wasn’t as foggy and fatigued as I was on AC, I had a lot of myalgias (not so much bone pain) and peripheral neuropathy, which I found more debilitating.  Another unexpected side effect was the development of a hypersensitivity reaction at the start of my third Taxol infusion.  I can only attribute it to the drop in Decadron (20 to 12 mg) and possibly to less of a time delay between pre-med and Taxol administration.  It was a little scary, not so much the symptoms (flushing, chest constriction, some nausea) but whether I would be able to complete the regimen.  They maintained Decadron at 20 mg and increased Benadryl so cycle 4 was not a problem.  Glad it’s over with.

 

I chose to have a central lumpectomy with excision of the nipple-areolar complex (the surgeons here were convinced there was extension to the nipple, due to the fact that I presented with nipple discharge – according to the path, there was no nipple involvement).  Like everyone else, I wrestled with the choice between a lumpectomy vs. mastectomy but ultimately went for lumpectomy: 1) MX wasn’t going to get me out of radiation (post chemo breast MRI still showed a significant amount of residual disease); 2) LX was a smaller surgery and recovery would be faster; 3) there was really nothing convincing in the medical literature that said MX was going to improve DFS or OS over LX + rads.  My surgical path showed residual disease with a therapy effect.  However the path details were a little vague, not clarified by a re-review requested by my rad onc (e.g. no mention of size of tumor bed, % change in cellularity).  Therefore, I am in the process of getting it re-read elsewhere.  It turns out the staff person reading the pathology was barely out of training (still a fellow).  The whole scenario makes me wonder why we can’t select the pathologist, just as we select other members of our onc team.  To entrust such an important path reading to someone who is inexperienced is just crazy.

 

I also wonder if they had checked a MRI after my 2nd AC cycle and saw minimal change, and at that point switched me to another regimen, whether that would have improved my odds of getting a pCR (my tumor was not palpable).  As it were, my interim MRI was after the 4th AC cycle, and I was already switching to Taxol at that point.  I know I am second guessing but I still feel there was a lost opportunity.  It would have been nice to achieve a pCR but then again, neither Adriamycin nor Taxol crosses the blood brain barrier so if there was seeding already in the brain, doesn’t matter what happens locally. 

 

Radiation treatment was started last week and I have finished 8 out of a planned 30 fractions.  I am getting whole breast radiation, without nodal irradiation since I had a negative sentinel node biopsy.  Because the tumor is on my left, I ended up having to have respiratory gating to have my heart out of the radiation field during the pulse.

 

A f/u meeting with my med onc is scheduled for next week to discuss post adjuvant care.  I understand that there will be a lot of post-treatment anxiety re: surveillance, recurrence and how to adjust to a new normal.  I already had such an encounter.  During chemo, I had 3 episodes of vertigo.  Since I was still experiencing vertigo the day before surgery, the surgeon had me go to see my PCP.  I was a little shaky performing some of the neurological testing and so a brain MRI was ordered.  I scheduled it as far away in the future as possible thinking I would cancel it if all my symptoms disappeared.  Well, that was a mistake.  I developed more symptoms including a headache that lasted weeks and had a very anxious 3 weeks.  Finally I got my MRI and there were no brain lesions.  The neuropathy has not gotten better (numbness in fingers and toes, unsteadiness, clumsiness) and it’s been 2 months since the last dose of Taxol.  My hair and eyelashes are starting to come back (hair about 0.5 cm, lashes, about 1 mm).  My energy level is better than it was during treatment but I still tire earlier than I expect and I guess when I get farther along into RT, I will feel more fatigue.

 

To decrease the risk for recurrence, I am following the advice of one of my med onc: 1) Exercise – I am aiming for a 5K walk in under an hour for most days, hopefully improving my speed as neuropathy and exercise tolerance improve with time; 2) Diet – I have been on a pesco-vegan diet since my diagnosis and am now aiming for a 30 gm fat diet (getting close but not there yet); 3) low dose aspirin daily.  Also trying out yoga - really makes me realize how stiff I have become.

 

Deb – I read your post elsewhere that you’re getting mammograms for f/u; I was told by my surgeon the exact same thing.  I’ll ask my med onc next week what she thinks.

 

Snickers – I have been following your posts and I really feel for you.  But as Turtle said, none of us know when our time is up.  Just today, I read the news about a shooting in a movie theatre in Denver, 12 people died tragically.  It’s like the on-off switch was just flipped for those people.  I am glad you are not feeling much discomfort from the mets.

12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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turtle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 2:03pm
Lee,

I'm so glad to see you back again, and I hope that you'll be posting lots of scientific articles in 'open access' so we can keep up to speed on the latest research findings!

I applaud you for your ambitious 'to do' list to reduce recurrence--I think it's these things we do for ourselves that help us take back control of our lives, and in so doing, reduce anxiety (and hopefully recurrence as well). I am not walking nearly a 5K/day, and still feel more tired than 'normal' in the evenings, but I am making an effort to exercise more, to try to get back to my pre-chemo fitness level. My biggest problem is with overall stiffness, and not sure if this is muscle stiffness or some kind of arthritic pain. I am also enjoying having my tastes back, so while I am trying to eat more healthy foods, it's been difficult to cut back on calories.

Welcome back friend, 
huge cyber hugs! Hug
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 3:23pm
Lee!!!   It's SO GOOD seeing you again!

I've missed your always intelligent, enlightening posts!  You've certainly been missed.  I'll never forget the articles you pointed me to re: Taxol and BRCA positives during a disturbing time when Taxol wasn't working.

Wishing you the very best!!!

Mindy
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 3:39pm
Dear Lee,

welcome back...

thank you very much for posting and bringing us all up-to-date on your journey.

I am so very, very sorry you have had such an arduous time.

The two things I would like to suggest are-

please try to concentrate on today and tomorrow
please try to find the beauty in each day

although we haven't met, I feel that I know you and I admire you on many levels. So I am sending you a giant cyber welcome back hug and hope we see you as often as you have the strength/inclination to post. You have been sorely missed.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 3:52pm
Hi Lee!

So glad to see you back! I'm sorry that the neuropathy is still plaguing you but it sounds like you are doing amazingly well with the other things you are doing!

I understand the second guessing; it is so hard to not when we don't get the results that we are really hoping to have. I wonder if they had done the interim imaging, if they just plain would have gone to the Taxol and called it good and not have switched to another regimen. Yes, you wouldn't have had the additional toxicity but you also might not have gotten any further tumor shrinkage. It is so hard to know and so frustrating.

I was disappointed with the change in the UM policy with the breast MRI. However, the radiologist did not hesitate to have me back for more images when something was not as she liked to see it and on their own they did an ultrasound of an area that has been tender without my asking. While I would prefer to have the security of the MRI, they were thorough, which is comforting at a certain level. I considered switching to having my mammograms done at the center where the oncologist is, but if I needed anything further in the way of surgery, then hands down, I would want to be with Dr. Newman, so for now I will continue to make the six hour drive!

Congratulations on putting chemo behind you!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 4:54pm
Lee, you wrote:

My surgical path showed residual disease with a therapy effect.  However the path details were a little vague, not clarified by a re-review requested by my rad onc (e.g. no mention of size of tumor bed, % change in cellularity).  Therefore, I am in the process of getting it re-read elsewhere.  It turns out the staff person reading the pathology was barely out of training (still a fellow).  The whole scenario makes me wonder why we can’t select the pathologist, just as we select other members of our onc team.  To entrust such an important path reading to someone who is inexperienced is just crazy.

______________________________________________________

Sorry if I missed it, but I'm not sure if you said where your pathology was performed / read. 

I too addressed some of the points of concern you mentioned in bold.  I felt my pathology was rather nebulous - no tumor bed size reported (even if void of carcinoma the bed size can be seen microscopically and duly noted) and a few other missing links I expected to see in the report.  Hence, I questioned my oncologist.   She said with all pathology, just like many other functions & procedures, it is their policy (MDA) that more than one pair of eyes evaluate - At least 2 and more likely 3 pathologists must concur.   Since you're having your path re-read this is irrelevant.  (I'd do the same in your shoes)   My path was signed off by an assistant professor- not an associate professor or professor- which further raised cause for questioning.  I do believe we should have the right to pick our pathologist like the other medical professionals we hire.  Talk about a most critical aspect in all of this!!

Take a look.  You'll have to copy and paste into your browser.

http://www.archivesofpathology.org/doi/pdf/10.1043/1543-2165-133.4.633

Maybe the reason I can't open when I make this hot (I tried in another post) is because it's a PDF.. (?) Not sure.. but it talks in-depth about neaoadjuvant pathology, tumor cellularity and other important factors that should be reported in neo pathology.

I hope the residual chemo effects get better for you ASAP.  You've been one of most thorough researchers and advocate every step of the way throughout your treatment- extending much knowledge to others here.  Are you looking into adjuvant clinical trails for residual?

Adjuvant therapy decisions can be anguishing.  I had an inner struggle with my choice in not having radiation.. even though I had a bilateral mastectomy + node negative + no LVI.  I'm finally coming to terms (and peace) with the decision.

Always wishing you the best,

Mindy




Edited by mindy555 - Jul 20 2012 at 11:08pm
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 5:55pm
Lee,
So good to hear from you again.  You have been in my thoughts and prayers and that will continue.  Hoping that your radiation continues with no problems and life returns to "normal" for you as soon as possible.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 8:32pm
Lee,

I feel awful.  I went back to read this entire thread.  I didn't know this is basically your update thread or that it even existed.  I could've been more helpful during chemo and various issues had I known.   That's also why some of my responses probably didn't make much sense.  Please accept my apology.

With warm healing wishes,

Mindy 
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 9:11pm
Lee,

Thank you so much for updating us.
So good to hear that chemo and surgery are behind you now......and with 8 out of 30 radiation
treatments done, you are a quarter of the way thru radiation.
Sorry to hear of your chemo experiences.........now the chemo residual side effects just need to
decrease and resolve.
Realizing that everyone is different, I still have some slight peripheral neuropathy in the fingers
and toes at over a year past last taxol........neuropathy did continue to decrease with time.
Just a thought.......in addition to your oncologist, consider seeing if your cancer center has a
survivorship clinic?   If yes, maybe check if there are services for chemo related neuropathy?   
I continued the Vitamin B6 100mg daily for a year after the last taxol with my onc in agreement.
(Some resources that I saw said 6 months and other said a year.)
Some say in general, for many/some, it takes as long after treatment as was the entire treatment
time to approach one's before diagnosis baseline before diagnosis......again, we are all different.
Still scratching my head and trying to figure out the pathology services at your cancer center.
Very wise that you are getting a 2nd path opinion.
Sounds like you have all the bases more than covered for decreasing risk of recurrence. As your
radiation schedule continues , know that you know to adjust the exercise as needed depending
on your fatigue level.

With lots of caring and positive thoughts,
Grateful for today......Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2012 at 10:07pm
Lee,

I have a pathology story you won't believe. In 2010 when I had my recurrence I went to another oncologist for a second opinion. Yes, this was an NCCN facility and they retested my original tumor pathology. Well to no surprise it was TN, but the path report was full of errors in my opinion. I corrected my history and faxed it to the pathologist and my oncologist. She talked to the pathologist and got my history/story corrected. The pathologist that wrote it called me to apologize. Subsequently they issued a revised report.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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