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Worried about reccurence

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katie420 View Drop Down
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    Posted: Jul 26 2017 at 5:34am
Anyone got single lung nodule on follow up scans.I got one on my first cAt scan.It is 4mm in size what can i do now??I am really confused and terrified.
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2017 at 11:04pm
Hi Katie,

From my understanding, small lung nodules can come and go.  I had a 3mm lung nodule show up on a scan.  My oncologist wasn't too worried about it, but said let's follow up in a few months.  On the repeat scan, it was gone.  

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 katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 27 2017 at 4:35am
Thnx donna.I will wait for more members to come and join us
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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: Jul 27 2017 at 7:55pm
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 katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2017 at 1:05am
Thnq Donna,These are very useful links,thnq again.There are not many replies of my post?😢
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2017 at 12:23pm
Katie,

I think the reason there aren't more replies is most women do not get follow up scans after treatment ends.  The standard here in the United States is just to monitor with a physical exam and blood work.  Scans are ordered if symptoms appear.  

If you've had a recurrence or metastatic, scans are used to see if treatment is working or if the cancer has spread.  That's when I had one of my scans to see if I was still in remission following treatment for my recurrence to an internal mammary node.  A routine PET/CT scan showed a new lung nodule that was small.  It was gone on the next scan.  

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 katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2017 at 10:10pm
Yeah Donna,Here in India the scans are ordered only if a patient has symptoms otherwise only physical examination and thats all,The scan was ordered when i have    pain during urination and passing bowels.
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Post Options Post Options   Thanks (2) Thanks(2)   Quote denny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2017 at 8:18pm
Hi !
I am a 2 year TNBC survivor as of Oct 2017 . I was stage 1 , no limpnode involvement , and Barca gene neg . I just had my oncology appt today and all is well . Also in may I had my 4th neg 3D Mamo, and they took 2 chest X-rays that came back good . I had a lumpectomy , 4 rounds of chemo with   cytoxen, and toxatere after surgery . 35 rounds of radiation. I have been to the ER around 40 times in the past two years due to side effects and pain . I have neuropathy in my feet and hands but praise the Lord I am still here and blessed !! I have been checked for everything under the sun ! I even had 2 endoscopy and colonoscopy this year . Fear took me over ..... I finally gave it to the Lord and he has blessed me with his calming spirit . There are days that I fear it coming back creep in , and that's when I go straight to the Lord in prayer and as always..... he takes it away ! Ms Katie ..... fear not says the Lord but pray for my peace and it shall be yours ! I have done a lot of research in 2 years , I have cried , I have laughed , and because no man decides my fate but Jesus Christ .... I have layed my fear at the feet of the one who is in control ! Love and hugs to all that are facing the cancer journey...... God is with you !!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2017 at 7:37pm
Hi, Katie.

I had CT scans after my breast cancer treatment finished in 2016, not to follow up on the breast cancer, but rather because I had pneumonitis as a result of my radiation treatments. This resulted in a series of 3 scans across the next 9 months to follow the pneumonitis. Between scan #2 and #3, 3 nodules showed up; however, these were .6, 1.8, and 2.3 cm in size, which were quite a bit larger than your nodules. I then had biopsies that indicated cancer and then had a lobectomy and am now back in chemotherapy.

It's good that Donna was able to give you information about small lung nodules, as it sounds like she has a lot of good information. I plan to look at the links she provided.

It does sound like you need to just give it some time and see if it disappears. Thank God we have so many people who can give us information on these forums and we can share with each other.


DX Triple Negative BC May, 2015 at stage 3 in R breast (My age 57). Treated w/CT and AC. Chemo reduced Stage 3 to Stage 1 followed by double mastectomy and Radiation. Finished Feb 2016.
Pneumonitis caused by radiation tx was dx June 2016 and treated.
Follow-up CT scans of lungs discovered a nodule in right upper lung, April 2017. Needle biopsy done and diagnosed as cancer, complication w/pneumothorax (collapsed lung). Underwent right upper lung lobectomy May 2017 with pathology diagnosis of metastatic triple negative breast cancer and 3 nodules removed with clear margins (.6, 1.8, and 2.3 cm in size). PET also showed very small questionable spot on left upper lung, but will have to just keep an eye on it and see if it turns into anything.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2017 at 4:00pm
thnq nslay!.U want my onco to follow that nodule but he is not worried at the miment now.He is going to follow it in one year.Meanwhile my mom has tickling cough.My mind is like a horse reaching here and there.Terrified right now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katie420 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 25 2017 at 4:01pm
thnq nslay.I want my onco to follow that nodule but he is not worried at the mo
ment now.He is going to follow it in one year.Meanwhile my mom has tickling cough.My mind is like a horse reaching here and there.Terrified right now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Calinative65 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 1:08pm
I'm new to this forum...hello!!! Has anyone had a local breast recurrence in same area of previous cancer after mastectomy? Was dx 10 years ago with stage 1 TNBC. Had double mastectomy and 8 rounds of chemo. No radiation. Have felt great until this 1 cm tumor in left breast was found. Waiting to have scan. Thanks for any information!!! Blessings
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 04 2017 at 7:54pm
I just went thru a recurrence. January 09 2.5cm lumpectomy with 2mm on 1 lymph node, full axilla dissection. AC & Taxol plus radiation. Clear until June 2016, I just felt something. Stage 1 spot in exact same place, exact same pathology. They say that this is rare as hens teeth. No studies to deal with it, just had to make it up. I did Carboplatin and Taxol, then mastectomy. NED at surgery so I was done. So far so good! What are they suggesting you do?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Calinative65 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 1:22am
Hate you went through this, but your story gives me hope I am not alone. Was also told very rare 10 years out with first dx stage 1. They want a body scan for mets which terrifies me to the core. I'm scheduled to go to md anderson asap to deal. I've had double mastectomy and 8 rounds od ACT but no radiation. All docs thought this was scar tissue/fat tumor and were shockec it had cancer cells. Just praying for a good outcome. Thanks for sharing!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 9:57am
I just "felt" it was back. I went in for emergency mammogram and ultrasound and they saw nothing but scar tissue. My medical oncologist had left my hospital so they signed me up with the head of the department and she saw me right away. I told her I still felt it was back. She said, "I always lean toward listening to survivors" and ordered a breast MRI with contrast. My insurance said they wouldn't pay for it I got it anyway and there it was - it lit right up, just under 2 cm x 1 cm. Biopsy confirmed. I started searching everywhere for info and there was ZERO - that was terrifying! And our TNBC guardian angel Steve got me into an awesome Dr. at MD Anderson and it was his chemo advice that I followed. I went back down to MDA every 3 weeks for scans to make sure it was responding. My UT Southwestern Drs and MDA Drs worked together as a team, it made me feel like I was getting the best care in the world, it gave me faith I might just make it out alive again. I had a really tough time of it this time, chemo made me sick, hospitalized sick, and reconstruction failed so I was in wound care for 9 months :( but I'm loving life these days, just grateful for everything and not sweating the small stuff
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 10:03am
Remember that body scans always turn up "stuff" that they have so further testing on. You've lived in your body a long time and it's an ever changing thing! My PET showed "something" going on in my thyroid and nasal cavity. Thyroid bloodwork and ultrasound showed it was probably normal inflammation . 6 mo follow up it was gone. Went to an ENT who stuck a camera up my nose and that was just inflammation as well. Tedious and scary!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 12:10am
Did you have
a complete response to treatment initially?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 11:26am
In not sure if you're asking me or Calinative65,but after the length of time between our diagnoses it does not matter. Both the breast cancer teams at UT Southwestern and MD Anderson agreed that this HAS to be brand new cancer. TNBC would not have just "lurked" alive and well in breast tissue for 6-8 years then started growing. That's what makes our situations so rare. They only see a brand new local recurrence (breast) in women who have the BRCA genes normally. What TNBC women have a high recurrence of in the first 2 years is residual disease growing and showing usually outside the breast, but sometimes within the breast if it was not all gotten with treatment. After 2 years, there's not much chance of residual disease showing up, because it's usually such an agressive, fast growing cancer (grade 3). Both UT and MD are studying my genome looking for flaws they've not seen before - it's that rare. I also have almost no female relatives and my grandmother's died in 1928 & 1941 of "female issues". 26 boy cousins, only Uncles and Great Uncles.
PS: this is why a lumpectomy, with wide clear margins, with chemo and radiation is as safe an option as mastectomy. Calinarive65 is the first person I've seen with this situation here except me! And she didn't have a lumpectomy.... The studies are true :)
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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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Post Options Post Options   Thanks (0) Thanks(0)   Quote GetWellHeather Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 8:41pm
I've seen Steve's name here many times but I have no idea who this is or how to reach him. Will you please share? I just found out my cancer has likely spread to my lungs and I'm looking for assistance. Thanks so much and best wishes on your journey!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 8:47pm
Getwellheather,

I'm so sorry you may be dealing with a recurrence.  Steve goes by the member name SagePatientAdvocates.  You can search for this name in the Memberlist and send him a private message.  Steve is usually very responsive.

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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