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Old 06-23-2012, 10:20 AM   #1
MJsHusband
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Lymphocele?

(reposting from another thread)

MJ had a CT scan this morning and they found a 3 x 2 inch cyst. It was in the location of the pain she has been having just inside her right hip bone area. It "may" be a lymphocele, which is a condition involving lymph fluid build up due to lymph node damage that can occur during a major surgery, such as her hysterectomy. The plan is for her to go in next Friday to have the cyst biopsied to ensure there is no spreading of cancer involved and possibly drained. There were a lot of malignant tumors removed during her hysterectomy, in the uterus, cervix, fallopian tubes and quite a few in lymph nodes so we want to be on the safe side.

Has anyone had a lympocele diagnosis?
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 06-24-2012, 08:25 AM   #2
Joan M
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Re: Lymphocele?

I never had this condition and really don't know anything about it, but would it be possible to remove the whole cyst rather than just to biopsy it? Why not get rid of it, just in case there is a problem? Or perhaps, removing the cyst would make the condition worse. I don't know, but I would probably ask about removing the whole cyst.

Hopefully, there will not be any problem and the cyst will reveal only lymph.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 06-24-2012, 09:18 AM   #3
MJsHusband
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Re: Lymphocele?

Thanks Joan.
If it's a lymphocele (like I hope), the standard treatment it is to drain it if it is causing pain, which is MJ's case. If no pain, they sometimes let it go away by itself. I've done a little reading about it but have limited knowledge of them.
I believe the plan will be to biopsy it and then drain it if it is a lymphocele. If it is another kind of cyst, I'm sure the plan will be to remove it as well. It's just that we don't know what it is right now. ~Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 06-25-2012, 06:34 AM   #4
Joan M
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Re: Lymphocele?

Greg,

Thanks for explaining lymphoceles, and, again, I'm hoping it will not cause additional worry once biopsied.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 06-27-2012, 08:39 AM   #5
MJsHusband
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Posts: 87
Re: Lymphocele?

Ugh, they can't do the biopsy until next Tuesday. And, they want to do more blood work on Friday. I'm not really sure what other blood testing they need to do for this. The blood test they did last wee showed normal white/red cell counts and normal liver enzymes, etc.. Why now a pre-biopsy blood test? Does anyone have any idea why?

Thanks,
Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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Old 06-27-2012, 12:58 PM   #6
Vicki revised
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Posts: 121
Re: Lymphocele?

Omg--why make you two wait?

Who is doing the biopsy? Her surgeon? Will it be done in a hospital and if so, on an outpatient basis? If MJ's regular medical team is involved I recommend you ask them--I would and have. Since it's MY body and my LIFE I have the right to know whatever I want to and have input if warranted.

We are not the run of the mill patient having a basic procedure with a standard outcome.

I've never heard of this condition but it sounds similar to lymphedema.

Hang in there!
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.

3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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Old 06-27-2012, 01:23 PM   #7
MJsHusband
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Posts: 87
Re: Lymphocele?

Thanks for the comments Vicki.

Tuesday is the earliest they can get her on the schedule at the hospital. Yes, it will be an outpatient procedure. I just found out the blood test is actually to test for coagulation to ensure there won't be any infections or blood-clotting issues with the biopsy.

I don't think most people experiencing breast cancer have to deal with lymphoceles. It's just because MJ was one of the rare cases with endometrial mets that required a hysterectomy. I've read that renal transplant patients can get those too. I just hope it is a lymphocele at this point.

Greg
__________________

08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)

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