Lynch syndrome -ovary issues

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jbelle
Posts: 20
Joined: Sat Nov 16, 2013 4:35 am

Lynch syndrome -ovary issues

Postby jbelle » Sat Dec 19, 2015 8:28 am

Hey everyone,

I know this board is colon related, but my topic is half relevant I guess!

After losing my mum to bowel cancer, and my 32 yo brother having recovered from stage 3 colon cancer, we have been genetically tested and found I too have lynch syndrome.

I had a colonoscopy and endoscopy last week and both came back clear, I was very relieved!

In preparation for my preventative hysterectomy, I had an ultrasound and discovered a 9cm cyst on my right ovary. I have long had cysts, but not one this big. I've had no symptoms at all, no pain. The gyno didn't seem too bothered until I informed him that yes, I do have 1 in 10 chance of ovarian cancer. Then he went into action, booked me into a ct scan, and had a C25 blood test etc. he said he was confident that it is a cyst, but wanted to take precautions.

Looks like my hysterectomy has been pulled forward to January now too, as he and I just want it all out.

I haveto wait until Atleast Wednesday for the blood results, and it's killing me! I'm so worried :-( I am 36 with a hubby and 2 young children so obviously I can't stop thinking about them.

Has anyone else had an ovarian cyst this big?

How do u cope with the anxious wait for news?

Thank you!

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Lynch syndrome -ovary issues

Postby DarknessEmbraced » Sat Dec 19, 2015 11:35 am

I'm sorry for the loss of your Mom!*hugs* Glad your brother recovered! Also that your colonoscopy and endoscopy were clear!*hugs* I hope that your ovarian cyst proves to be benign.*hugs* I know there are other people who know about ovarian cysts who could help.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Lynch syndrome -ovary issues

Postby Steph20021 » Sat Dec 19, 2015 12:07 pm

A young woman I used to work with had one about 7cm and it was removed and benign. Try not to stress, I know easier said than done. Good luck!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

Bat-Mom
Posts: 101
Joined: Sun Feb 09, 2014 8:01 pm
Location: FL was RI

Re: Lynch syndrome -ovary issues

Postby Bat-Mom » Sat Dec 19, 2015 12:35 pm

I just found a much smaller cyst or mass from follow up CT. My Onc wants the ovary out. Awaiting CA125 and ultrasound results but he thinks it is best to just get it out. It is complex vs simple if that means anything to you.

I don't think I would want a cyst that big hanging around. Wouldn't want a burst to,happen. I have never experienced it and I sure wouldn't want too.
54 y/o
10-2013 colonoscopy
11-2013 colon resect
12-2013 stage 3b results are in 4 of 11 LN
12-2013 - 5-2014 folfox
9-2014 cea 1.7 12-2014 CT clear cea 1.7 3-2015 cea 1.6
6-2015 new doc new lab. Cea now 3.9???


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