UPDATE advice needed - I'm in the hospital with ovarian cyst

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arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Now what? Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby arizona mom » Fri Sep 11, 2015 8:49 pm

Well...my ovary had colon cancer in it. :cry:

There were also suspicious spots on my uterus and fallopian tube. She took it all out and, looking around, didn't see anything else that was suspicious. There might have been a little leaking in the process and it broke up a little as she was taking it out. So, that's not good. Overall, she said the surgery was very successful, though.

I'm doing really well physically. much better than before surgery.

Mentally...I feel surprisingly ok. Maybe I'm in shock.

I'm anxious to talk to my oncologists at find out my plan, but it's Friday night, so it will have to wait a couple days. I also have to wait for pathology. So I'm hoping my friends here can help me brainstorm the most likely next steps so I don't totally loose my mind over the weekend.

So, Is it fair to say I'm back to Ned status? Of course, I imagine my chance of another reoccurance is pretty high now. I assume I'm going to do another 6 months of chemo, but should I be looking into longer term maintenance now? ADAPT? Should I consider HIPEC?

I could really use some encouragement now.... :cry:

Thanks, Lara
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

NEDbound
Posts: 10
Joined: Tue Sep 08, 2015 10:28 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby NEDbound » Fri Sep 11, 2015 9:11 pm

I don't know enough yet to be of any help. But want to let you know I feel for you. :( A CT with NED just a few months ago (per your signature) and then this. Hoping your surgeon got all/most of it and the new treatment plan is successful.
Dx 8/28/15 at 39 years old with stage IIIc (T3N2b)
Laparotomy partial colectomy (ascending removed for cecal mass) 8/29/15
8/27 nodes positive
mediport 9/11/15
KRAS positive p.G13D :(
PET negative 10/15
Folfox 10 rounds
PET negative 2/16
PET positive 7/16 periaortic node, retroperitoneal nodes in right pelvis, and spot on spleen
CT guided biopsy 7/27/16
Folfiri and avastin with regression

debb
Posts: 186
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby debb » Fri Sep 11, 2015 9:28 pm

Ugh...so sorry for the news. But glad that you had this taken care of so soon! And very happy you are feeling good enough now to post.

What you do next will depend on the path report and your doctor's advice. My doc (mskcc) has always recommended no chemo after my surgeries, aside from my initial resection. And I love him for that..I mean, chemo (Folfox) basically didn't work for me because I had a recurrence in my ovary. And I pretty much had to check out of my life and my kids' lives while on chemo because I felt so shitty during treatment. But I did persue HIPEC after the ovary thing because it had burst. It isn't offered or recommended by mskcc, so I went elsewhere for that. I kind of had half a HIPEC because the only thing removed was the omentum, no cancer found. Then "shake & bake." So my recovery was quick.

I'm glad I did HIPEC because the bursting part about my ovary scared me a lot. But again, not sure if it helped because about a year ago, I had a small recurrence at my scar site. Had that removed.

You can't take the next step now because you have to heal from today. And now you are in instant menopause, so you'll have some symptoms to manage. Ask for help...you don't have to be miserable. I eventually started taking celexa to help manage hot flashes, with the added benefit of it helping to calm me.

You're doing all the right things. I'm glad to help you sort through your options. Hope you have a peaceful night.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby arizona mom » Fri Sep 11, 2015 9:45 pm

debb,

I'm so glad you told me that! Maybe it is best to save chemo till there is actually something visible to treat. It is really good to know that there is a possibility that I won't have to do chemo.

How long after surgery can you have HIPEC? Where did you have it done?

Thank you so much! Your story is encouraging!

Lara
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby CM35 » Fri Sep 11, 2015 10:21 pm

Lara,
I am so sorry you are going through this...just plain sucks. :( I will PM you tomorrow about my HIPEC experience... I am thinking about you... As for NED, based on the fact your surgeon removed everything visible, my guess would be yes... Hang in there!

Colleen
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby hummingbird3 » Fri Sep 11, 2015 10:31 pm

I am so sorry to hear of your ovary .. we 3 seem to have very similar stories.

I also explored Hipec, but after much research, I did not do it. I may someday if I need however. I was told it was a very risky surgery to go through with no known cancer at that time. I instead did Folfiri, because Folfox was not an option after such a quick return of the cancer to my ovary. Again, basically did not work for me.
I had a bit of time pass before my third recurrence. I again explored Hipec, but again was advised not to do it as my recurrence was in the pelvis, and Hipec is not as effective on lower pelvic recurrence as it is on higher areas such as peritoneum. So, again, it is a tool I still have in my toolbox for future use. I instead had pelvic surgery removing all the cancer. It was very successful according to the surgeons.

So, you have some options. I would strongly suggest getting several different opinions and very importantly to do so at separate facilities. You have time during your recoup and will likely feel better after hearing from different professionals. I would also strongly suggest getting these opinions from experienced CRC surgeons. Feel free to PM me if you have any other questions.

I will say the hot flashes instantly were not fun. :( I did not have much help with them. I was not on board with taking any other drug with the chemo I did after that surgery. So I learned to dress in layers, have a fan in my room at night, and used herbal ice packs around my neck. I also did acupuncture, which helped me a lot! They have subsided over time.

Wishing you a smooth recovery. Sending lots of well wishes your way!
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby Stanfordmom » Sat Sep 12, 2015 5:12 am

So sorry, Lara, to hear this. I hate cancer with passion now, it is not fair for you or me to go through so much :(

So recover smoothly, and then get some second opinions. If you are thinking about HIPEC, I heard that DR. Lowy at Southern California was great, and it might be kinda of close to you.

(((((((((Lara))))))))

Love,

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby jalusa » Sat Sep 12, 2015 11:21 am

Sorry to hear this. Cancer sucks.

I thought Sloan offered something similar to hipec but through a port in the abdomen.

Prayers for you.

Jim
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby arizona mom » Sat Sep 12, 2015 1:09 pm

Thank you all for your kind words! I don't know where I would be without my wonderful friends here at ColonTalk.

((((((hugs))))))

I'm sure I will my sharing notes with everyone in the next few weeks while I make a plan.

I frustrated that nothing showed up on the CT scan. It was less than three months ago that I had a clean CT scan. My CEA should have been a good marker for me too. I guess (or at least I'm hopefull) that it was a little bit a cancer cells that caused a huge fluid filled cyst. It all happened so fast! I guess we won't know the answer to how much cancer there was until the pathology report comes back.

I have not done Folfuri before. What is that like? Does it work the same with the 46 hour pump? Is hair loss common? I lost a lot of hair on folfox?

I'm recovering well. I might be able to go home tonight, but more likely tomorrow.

Thanks again for being here.

Lara
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

stu
Posts: 1396
Joined: Sat Aug 17, 2013 5:46 pm

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby stu » Sat Sep 12, 2015 1:43 pm

Hi.
Glad to hear your recovering well. So glad you got good advise .
Much love
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby hummingbird3 » Sat Sep 12, 2015 2:09 pm

Hi Lara,
What great news you are recovering so well!
I did Folfox, had a clear CT scan and one month later the ovary was found, and then did Folfiri after the surgery.
Folfiri was easier on me than the Folfox by far. I still lost some hair, but that I believe is really due to the 46 hour pump of 5FU .. which yes, Folfiri has. The only difference is the drug in the infusion suite is not Oxali. but Irinitican.

FOLFIRI is a chemotherapy regimen for treatment of colorectal cancer. It is made up of the following drugs:
FOL – folinic acid (leucovorin), a vitamin B derivative used as a "rescue" drug for high doses of the drug methotrexate, but increases the cytotoxicity of 5-fluorouracil;
F – fluorouracil (5-FU), a pyrimidine analog and antimetabolite which incorporates into the DNA molecule and stops synthesis; and
IRI – irinotecan (Camptosar), a topoisomerase inhibitor, which prevents DNA from uncoiling and duplicating.

FOLFOX is a chemotherapy regimen for treatment of colorectal cancer, made up of the drugs
FOL– Folinic acid (leucovorin)
F – Fluorouracil (5-FU)
OX – Oxaliplatin (Eloxatin)

The oxaliplatin affects the nerves more with neuropathy.
The Irinotecan affects the gut more with diarrhea and/or vomiting (which I had none of due to excellent management of antiemetic drugs administered via IV during infusion. I could not take atropine so the combination of Emend and Aloxi was used. They worked very well for me and lasted 3-5 days. Had a little break through nausea but if I ate crackers something like that it was controlled.
I had a lot of weird issues with oxaliplatin though, so anything would have been better for me! Everyone is different however, I have heard some that had a tougher time with Folfiri.
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby Stanfordmom » Sat Sep 12, 2015 6:46 pm

Hi Lara,

Folfuri was harder on me than Xerox/Avastin. The first night after my first infusion, I had vomiting and headache all night, and I had to go in the next day to get IV anti-nausea drug and fluid. After that, they got approval for EMEND IV from my insurance, and that took out most of the nausea. Other than that, I also had atropine shot (very painful shot) to prevent stomach cramping. I had 5-FU pump for 48 hours before I went in for disconnect. The third and fourth days were most tiring for me, and I got this weird cloudy feeling. I lost more hair on Folfuri but thank god I still got some left.

Hope this helps, and please keep us updated.

Love,

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

User avatar
Caligirl64
Posts: 1
Joined: Wed Oct 07, 2015 8:54 pm
Location: Oregon

Re: UPDATE advice needed - I'm in the hospital with ovarian cyst

Postby Caligirl64 » Wed Oct 07, 2015 9:59 pm

I began having severe pelvic pain, constipation and frequent urination 4 weeks post-op from colon resection. I thought maybe it was a UTI or problems with the colon surgery. Dr. ruled out bladder and UTI issues, but ordered a pelvic ultrasound. Showed a 5.1cm cyst on left ovary. Wasn't on the CT scan or PET scan I had just weeks before. I am post-menopause, so I doubt it will magically disappear on its own. Dr. and Surgeon just say to keep an eye on it. Pain is a little less severe but I still have all the other symptoms. Waiting for a follow-up ultrasound in a few weeks to see if any changes. I have not had chemo or radiation and no mets to lymph nodes. Small cysts on liver and kidneys and 2 small nodules on my lung. So far, all clear. I just wondered if this was a common thing after colon cancer.
CaliGirl64
Aug. 2015 Colon Cx with sigmoid colectomy
0/16 lymph nodes


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