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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2018 at 8:22pm
Hi Peggy5,

Have you had your thyroid level checked?  Many of us were left with major thyroid issues following treatment.  If you haven't had your TSH levels tested, ask your primary for a blood test.

Also, do you know your Vitamin D level?  Most of us diagnosed with breast cancer had extremely low or deficient levels of Vitamin D at the time of diagnosis.  

Hope you start feeling like your old self again.  

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 Peggy5 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2018 at 9:50pm
Hi Donna,
I guess I should edit my original post: I was diagnosed in July, 2016, not 2017.  I've been taking 2000 IU of Vitamin D for years now, since where I live is known for low vitamin D levels.  But I haven't had my thyroid levels checked...I will ask next month when I get my blood pulled....thanks.


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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2018 at 9:53am
Hi Peggy, welcome to the site, but I'm sorry you have to be here. Fatigue is a very common side-effect of cancer treatment, so yes, this is normal. Your job, post-treatment, is to heal and that means listening to your body. Feeling worn-out at the end of a day is very normal for me, in fact, I can't make it through most days without a rest/nap. Like you, cardio sounds daunting to me too. For now, I'm doing yoga as well as strength and tone before I try cardio again, I do my best to include a walk every day (sometimes that means to the pick up the mail). What you're experiencing is part of the new normal for you, something well all learn to figure out. Wishing you good health as you heal, Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dolphingirl1224 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2018 at 11:09am
Hello everyone, I do not know if this is the place for me to be but I am at a loss right now so I am hoping that someone here might have some insight for me. I am 40 years old and have been having mammograms since I was 22 due to breast density and extremely fibrocyctic Breast tissue. Jan 2nd, went in for annual mammogram. Got called back for diagnostic (not uncommon for me). Went in on 1/18 and was told that I had L breast BIRADS 4 mildly pleomorphic tightly clustered microcalcifications. Went in for stereotatic biopsy on 1/24 mind you they had to go in twice because the tissue is so dense that they couldn't get what they needed from top down approach. Radiologist called me and told me that they found ADH; however, I just got the pathology report and this is what it says. Sclerosing adenosis and atypical lobular hyperplasia with more calcifications from top down. From lateral approach they got more calcifications aytipical ductal hyperplasia, sclerosing adenosis, and possible papillary lesions. I am angry because I was not told any of this and I have to wonder what else they are not telling me, also they want to to an excisional biopsy but what does all of this actually mean. They keep telling me that I am fine and there is nothing to worry about, but both of my grandmothers had breast cancer and I am very concerned.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote darcyd Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2018 at 8:49pm
CarolinaGail,

I too lurked around and read so many posts after my Oct of 2015 Diagnosis. I totally understand that whirlwind. I would explain to people that it was like being on a merry-go-round that was shifted into hyperspace mode. I also had a "satellite tumor" growing close to my larger tumor (5mm). It made no difference in my treatment as I was having chemotherapy first. I chose TC, Docetaxel and Cyclophosphamide every 21 days x4. I also needed Neulasta because my white count never came back up after the first treatment. I kept working through tx. I needed a week off after chemo and then worked the next couple of weeks. I was wore out and listened to my body. When it said "rest", I rested. I was given a choice of lumpectomy and radiation or mastectomy. I chose to have a unilateral mastectomy with reconstruction. I do not regret my choice. Surg was March first 2016 and I had no lymph node involvement. According to the pathology report there was no cancer in the breast tissue. The chemo killed both tumors.
Let me know how you are doing. I am sending you positive juju.
Darcy
IDC with extensive squamous differentiation,1.5cm,stage 1,Grade 3,Ki-67 25%,TNBC
TX-TC q21 days x4, Neulasta x3,mastectomy 3/1/16. dx's 10/15 age56
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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2018 at 6:39am
Hi Dolphingirl,

I know your post is a few months old and you may have posted again.
What was found when you had further testing?

I had TNBC in 2009 and have it again in the other non mastectomy breast. This time it appeared as microcalcifications. They are not uncommon in women and older women (I am 61). but my mammogram showed a cluster and pattern that made them suspicious given my history.

Since you have a family history of breast cancer i would have them watched closely and hopefully you have had more testing to rule out malignancy.

I can understand your anger.   I am so sorry your report was not discussed in further depth for you so you could understand everything.

I will check the forum to see if you have posted more on another thread.

All the best,

Blair


Edited by cheeks - Mar 20 2018 at 6:40am
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2018 at 11:01am
Hello sweet Cheeks,
I am so sorry you are facing another diagnoses of TNBC.  I know you are sad and angry that you are facing this journey again.  It does sound as though you are taking an aggressive route with your treatment.  Also, since I was diagnosed in 2006 I have read many times that a new primary is much better than having the former cancer spread.  I am looking at any positives I can find in your situation. 
I remember all the times I joked about coming around the mountains to see you and sit in your rocking chair on the front porch and look at the beautiful mountains.  I hope you see what beautiful memories I have of sharing posts through some difficult days.  I am here today to hear anything you wish too share with me and all of us on this site. 
You are a friend, unseen, but in my heart.  I am praying for you.
 
Love,
Lillie HeartThumbs Up


Edited by Lillie - Mar 21 2018 at 11:02am
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2018 at 11:19pm
Dearest Lillie,
Yes, i remember our rocking chair dream. You, me , and Carol rocking away on my porch. Always thought you and Donald would make your way here on one of your road trips with friends! I hope one day you will come and bring some family with you. It still saddens me that he went so quickly and suddenly. My prayers for you have always been peace and calm in your grief. I know your wonderful son and lovely daughter have been a comfort to you and loads of fun over time. I was always so happy for you and them that your daughter found Christ in her life, that is a blessing for sure. I had my mastectomy last Thursday and am doing good. We knew from the MRI there were 18mm of microcalcifications. Thank God i chose a mastectomy again because there was also 4cm DCIS lurking there unseen on the mammogram and MRI. I know the chemo should mop it all up but 4 cm is big to not be seen at all and not spotted by the radiologist or my cousin who is a radiologist at Mayo. She also reviewed everything as my 2nd opinion. Scary. Sentinel node was clear and i got to enjoy some shamrock ☘️ green colored pee after surgery from the dye. Just in time for St Patrick’s Day! We go back to Vanderbilt on Wednesday for my surgery followup. Chemo should start in a few weeks. I am shocked after 9 years and angry of course, but I finally, over the years,?came to understand Steves advise to enjoy the beauty of each day. Todays beauty was snow here in the high country. It was beautiful and we enjoyed the day with family and some good vegetable soup.
I love you 💕

Blair

Edited by cheeks - Mar 25 2018 at 1:18am
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.
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Lisa s View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 12:32am
Queation: I finished treatment Feb 2018/ now the opposite breast seems larger and firmer than radiation side. Has anyone experienced this ? I am trying not to freak out and have message in to doc. I do not feel a lump in that side...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 1:24am
Hello Lisa,
I wish I had an answer for you. I did not have radiation the first time and I have not started treatment for this occurrence other than mastectomy so far. I hope someone else will come along and have an answer for you. I can say this, if you are concerned with what seems to be swelling in your good breast you did the right thing by sending a message or calling your doctor.
I will ask this... is it red, swollen and painful? if so, it could be infection or a cyst. I had one in my right breast shortly after finishing treatment the first time.
Please do not worry yourself sick. You need rest and sleep. Tomorrow will come soon with answers for you. Do some deep breathing.

Let us know what your doctor has to say.

Blair

Edited by cheeks - Mar 26 2018 at 1:54am
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 1:53am
It just seems firmer and bigger than radiation side   no redness. Supposed to have mamm o in May but I emailed doc to see if I can do it earlier.these are the times I wish I would have just done a double mastectomy and been done
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2018 at 9:45am
Lisa,
I am so sorry. The worry about these things can be awful. Given my present circumstances i wish I had removed them both in 2009 also. That of course does not mean every person with TN is going to recur because so many never do. The doctors feel sure mine is genetic even though i do not test positive for any thing genetic, yet.
Until you hear back from your doctor try your best to stay in the moment and enjoy the rest of your weekend. Doing this will serve you well throughout your journey forward. Tomorrow will come soon enough, do not ruin today anticipating tomorrow. Right now you have done all you can do until you talk to your doctor.

Blair
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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Peggy5 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2018 at 1:23pm
Hi Everyone,
I'm not sure if I'm posting in the right section, but I have a question about diet.  I was reading about how to reduce the odds of recurrence.  I try not to ask Dr. Google too many questions without verifying with an actual MD, but there are numerous references to low-calorie diets and diets low in methiomine.  I actually was considering the Ideal Protein diet, but the low methiomine diet recommends very, very low protein.  So, my appointment with my onco isn't for a few more weeks.  Does anyone have any ideas on this?
Peggy
Dx: 7/16
TNBC, stage 0-1
Lumpectomy
Dose dense AC x4, then taxol
Radiation 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jan43 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2018 at 4:56pm
Hi All, Not sure if I am entering this correctly. I seem to have missed the help section.

Just Diagnosed with TNBC Grade 3, clinical staging 1a, Scheduled for partial mastectomy, chemo and radiation.  
I have concerns about just what is the standard course of treatment. I live in a city of about 100,000...one treatment center.  

Because I am 74, the ACT treatment might be too toxic although I am in good health and fairly fit and active. Just low thyroid and mild colitis. 

Will be looking for older women who have been treated.

Jan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Peggy5 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2018 at 5:26pm
Hi Jan!
I'm almost 61 and not as fit as you.  If you have concerns about the standard protocol, be sure to ask your oncologist what ALL the options are and WHY he/she is recommending what he/she is.  They should not be insulted and don't feel rushed, which is hard to do.  I'm lucky that I live moderately close to Fred Hutch in Seattle and my onco automatically emailed the people up there to see if they would recommend anything more than what he was saying I should do.  Just because you don't live in a big city, doesn't mean you can't have access to all the info out there.
Good luck and let us know how you're doing!!
Peggy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2018 at 7:42pm
Hello Jan,
I was diagnosed in 2006 at the age of 65, stage 11b. I had a mastectomy followed by ACT plus gemzar. It was a clinical trial so I didn’t have radiation. I live in a small town, but my oncologist was and still is the best. I feel you are getting a good regimen. Good health is on your side also. Stay in touch and let us know how it goes.
Regards
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Apr 08 2018 at 12:15pm
Hi Jan: I am 64, almost 65, and I was diagnosed in November of 2017. I started chemo in January with A/C, dense dose, for 4 treatments. I now am doing Taxol and Carboplatin for 12 weeks-only six left! The Carbo is only every third treatment. I got a second opinion after I was diagnosed with Dr. Traina at Slone Kettering in NYC and this was her suggestion. The question of age never came up. My local oncologist followed her lead. I really did not have any big issues at all with the A/C. The pre-meds they give are great and the medication I got for nausea post infusion worked like a charm. Never really had major stomach issues. I have found the Taxol even easier to tolerate. My only real side effect is fatigue, which is just part of the program with chemo. Unless you have some underlying medical condition, I would not be concerned about A/C. Maybe a second opinion would be helpful. I am so thankful I got one!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Newbie14 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 3:30pm
I’m just wondering...are there “ any” long term survivors? When does one feel at ease, 5, 10, years...ever? Is there hope, for us. Any statistics.

Edited by Newbie14 - Apr 17 2018 at 3:31pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 6:15pm
Dear Newbie 14,
On June 9, 2018 will make 12 years since I was diagnosed with TNBC.  I was stage IIb, grade 3, with lymph node involvement.  I had a left breast mastectomy, 4 dose dense chemo treatments of A/C, followed by 4 dose dense treatments of taxol and gemzar.   I must confess that the first 5 years were difficult at times.  I didn't have any recurrence, but the mind plays tricks on us.  After 5 years I began to feel more comfortable about things.  I know now that I could have a recurrence, but have read that the longer you go without recurrence the more likely, if it recurred, it would be a new primary instead of metastasis to other parts of the body. 
Newbie, good luck with your treatment and may my post give your a courage boost. 
Love,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2018 at 6:20pm
newbie 14, 
 there are plenty of long term survivors and plenty of threads on this forum attesting to that. I think if you just look up "survivors" you may find what you are looking for. 

There is plenty of hope. When one feels at ease is truly a personal thing. For myself, I had made a very conscious decision to not freak unless I had a definite reason. Yes, easier said than done. Many deep breathes. I couldn't let cancer [ or fear of] rule me. I was a single parent with young kids. 

You'll see by my signature how long its been since I had tx. My tx was half of what they do today. I am certainly not advocating that. I realize how lucky I am but my cancer was so long ago now, that I barely think of it. In fact, I only come on this forum when a notice is sent to me, so am not on very often. 

Good luck to you. 


kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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