My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

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JulesW
Posts: 22
Joined: Thu Jun 21, 2018 1:48 pm

My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby JulesW » Mon Dec 06, 2021 6:01 pm

Five years ago today December 6, 2016 I was diagnosed with stage four rectal cancer at the age of 46. I had previously been very healthy with hardly a headache my entire life. I had a big lower gastrointestinal bleed and collapsed on the floor the ambulance came and the sheriff had to break down the front door to gain access. The following day they found rectal cancer 13 1/2 cm high. CT scans showed four lung spots clustered in my right upper lobe less than 8 mm in diameter. Within three weeks I was in surgery. The cancer had invaded through the wall of the rectum and was abutted against the right ureter. 0/32 nodes positive. During the procedure some pressure was accidentally placed on my right femoral nerve resulting in a femoral neuropathy and inability to bear weight for about three months. I would've been placed on adjuvant Folfox but the neurologist wanted me to avoid Oxaliplatin so I was placed on Xeloda for six months.
Follow up CT scan three months after the surgery showed that the four spots in my right upper lobe had not grown and were clustered so it was thought it might actually be scarring from an old pneumonia. June 2018 follow-up CT scan showed the four spots in the right upper lobe had increased in size and there were three new spots in the left lung the largest of which was 1.8 cm in diameter. The thoracic surgeon said that I was not a candidate for VATS, radiation oncologist said they were too many spots to treat and I was placed on Folfiri. Dr. Drewes in Coswig, Germany reviewed my films and accepted me as a patient. October 2018 I had a right sided pulmonary metastectomy, October 31, 2018 I had a surgery to repair a right sided pneumothorax. November 2018 I had a left-sided laser assisted pulmonary metastectomy. Approximately 15 spots were removed and additional lymph nodes and approximately six or seven were metastatic cancer.
January 2019 I saw a lot of blood in my urine and got a cystoscope and a biopsy which showed that rectal cancer had invaded my bladder. After extensive testing a partial cystectomy was performed March 1, 2019. The pathology report showed that there was one positive margin but the surgeon insisted that he had gotten it all. I got follow up at Memorial Sloan Kettering and they recommended follow up cystoscopies which I got until the original surgeon insisted that I didn't need any more. March 2021 more blood in the urine and follow up cystoscopy/biopsy showed a recurrence of the rectal cancer approximately 1 inch in diameter. In addition there was an external iliac lymph node 1 inch diameter on the right side SUV 14.
We delayed chemo for 2 1/2 months to do IVF and then went on Folfox for three months as recommended by Dr Connell at Memorial Sloan Kettering prior to likely surgery. At follow up at MSK September 2021 initially the rectal surgeon didn't want to go in because he thought it would just come back but after presenting the case at the tumor board my oncologist and urologist convinced him to proceed. The main thing that convinced him was that I had had two years recent NED. October 2021 I had a five hour open abdominal surgery where they removed 1 inch of cancer from the dome of my bladder and removed the involved left-sided vas deferens, on the right side they removed a spot which was implanted on the peritoneum by my appendix. Pathology showed they got it all and all lymph nodes were negative. Oncologist says there is a high risk of it coming back so wants me to finish up a course of a Folfox and get CT scans every three months for the next two years. That's my story, I hope it's of use to some of the readers on this forum.
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
5fu x 6 mos
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.2cm)
6/18 folfiri + Avastin
Laser assist pulm. metastectomy B Germany 10/18 and 11/18- 10 nodules removed, 6 cancer
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
3 months folfox
10/21 MSK partial cystectomy with B pelvic LN dissection
got margins!

MadMed
Posts: 79
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby MadMed » Mon Dec 06, 2021 7:01 pm

Wow, I’m in awe. You are a warrior. I hope things settle down for you, you deserve it.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
surgery postponed until after 2/23 sigmoidoscopy

prayingforccr
Posts: 213
Joined: Sun Jun 28, 2020 4:44 pm

Re: My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby prayingforccr » Mon Dec 06, 2021 7:56 pm

A warrior, indeed.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 Will begin immunotherapy/sbrt at weill cornell and nyu/langone in march

JulesW
Posts: 22
Joined: Thu Jun 21, 2018 1:48 pm

Re: My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby JulesW » Mon Dec 06, 2021 8:33 pm

Thanks guys. I prepare for the worst but am cautiously optimistic, there may be a high risk of recurrence but in over 2 1/2 years only 2 spots have popped up
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
5fu x 6 mos
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.2cm)
6/18 folfiri + Avastin
Laser assist pulm. metastectomy B Germany 10/18 and 11/18- 10 nodules removed, 6 cancer
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
3 months folfox
10/21 MSK partial cystectomy with B pelvic LN dissection
got margins!

JLD13
Posts: 11
Joined: Sun Feb 05, 2017 12:20 am

Re: My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby JLD13 » Wed Dec 29, 2021 7:33 pm

Wow i agree you are a warrior! thank you for your story. May I ask if they wanted to remove all of your bladder? My brother has rectal cancer with reoccurrence to the bladder and they recommended removal of his whole bladder which they did in June. His follow up scans showed something in the pelvis and lymph nodes and he just had a Pet scan so now waiting on those results :(. Prayers to you that things start going well and you stay NED!

JulesW
Posts: 22
Joined: Thu Jun 21, 2018 1:48 pm

Re: My Story 5 years with Stage 4 Rectal cancer (lung mets, local recurrence)

Postby JulesW » Wed Dec 29, 2021 10:12 pm

Hi JLD13,
Despite being told I was inoperable twice and some intense surgeries and treatment regimens these actually have been overall good years, five of them.
I was mentally preparing myself for a cystectomy but to my surprise I think because of the location the urologist said he could do a partial. He still wants me to do cystoscopies every 3 months to make sure that nothing comes back and that he got it all. What we thought was an external iliac lymph node was actually an implant by the appendix probably some tiny cancer cells that spilled into the abdomen from the bladder which itself was an innocent bystander.
We did just get a follow-up CAT scan which shows a few small spots in the lungs over the last year one of them is most likely for real and really all of them we should treat as if they were mets. I remain cautiously skeptical but willfully optimistic.
I'd be interested to hear the result of your brother's pet scan
Best,
JulesW
46 rectal ca. 12/16
LAR 1/17, 0/30 nodes +
5fu x 6 mos
CT 6/18 - 4 nodules R lung + 3 spots in left lung (largest 1.2cm)
6/18 folfiri + Avastin
Laser assist pulm. metastectomy B Germany 10/18 and 11/18- 10 nodules removed, 6 cancer
12/18 blood in urine -> rectal ca met on bladder
3/19 partial cystectomy
4/19 MSK self referral
Avastin + 5fu x 6 mos
3/21 blood in urine ->bladder recurrence + R ext iliac node
3 months folfox
10/21 MSK partial cystectomy with B pelvic LN dissection
got margins!


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