4 years

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Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

4 years

Postby Siti » Wed Mar 08, 2023 6:26 am

Hello everyone,

It has been about 4 years since my husband was diagnosed with stage 4 cancer and given 2 years to live. He recently did his CT scan and received NED status :) My husband do suffers from manageable side effects because he's still on maintenance chemo but 80% of the time we live a normal life :)

I just turned 40. As a woman, my "deadline" for having a child is pretty much up and no matter how hard I try, I struggle to see a future except being alone without a family. I feel incredibly guilty to discuss this but having to internalise my feelings has been extremely difficult...I can't discuss with my husband and my friends are "young" and busy with their families so they do not empathise. I have seen multiple psychologists but did not help.

I know it's unfair to discuss this because so many of you are going through an extremely difficult time but I would be so grateful to receive replies or DMs if you're able to share with me how you / your family cope since diagnosis.

To end on a brighter note, we are so thankful for my husband's continuous good health (I thank god every day) and ever so grateful for this support group -- you guys have been my source of light on my darkest days.

Siti
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: 4 years

Postby beach sunrise » Wed Mar 08, 2023 10:25 am

NED, thats the best thing I've heard all morning!
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 4 years

Postby claudine » Wed Mar 08, 2023 1:44 pm

Siti, it is not "unfair" for you to discuss your feelings here, this is what the forum is for! believe me, I feel the same way at times. I feel extremely fortunate to have two healthy young adult children, and I do my best to live in the moment, but sometimes I can't help but grieve for the life we wanted as "empty nesters" and won't likely get to have. Feel free to DM me if you want!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

saltygirl
Posts: 165
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: 4 years

Postby saltygirl » Wed Mar 08, 2023 5:28 pm

Siti,
Your feelings are legit. Why can’t you discuss it with your husband? 40 is not an old age if you still really want a child. Don’t feel guilty. If you truly want that. Than do everything possible even with a donor sperm. It’s you life. You don’t have to sacrifice yourself for your husband. I hope your husband would be wonderful. But can’t tell you how many husbands act like ass… if this cancer situation is reversed.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 165
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: 4 years

Postby saltygirl » Wed Mar 08, 2023 5:29 pm

Have 2 close friends over 40 who are currently trying for a baby. Another friend had her twin girls born at 41. Her 1st and only pregnancy.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

saltygirl
Posts: 165
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: 4 years

Postby saltygirl » Wed Mar 08, 2023 5:33 pm

I have 2 kids / 21 and 19. They are my treasures in life. I have done a lot at my 46 years. Lived on 3 different continents etc. I am not saying that you can’t be happy without kids. But decide for yours. Don’t let anybody hold you down. And for sure not your husband’s cancer. Sorry for 3 posts. Getting ready to go out with my friends tonight. Yes, on Wed. Heading to Mexico on Saturday with my son :lol:
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

pantufla
Posts: 148
Joined: Thu Dec 03, 2015 12:44 pm
Facebook Username: kelleykulina

Re: 4 years

Postby pantufla » Thu Mar 09, 2023 12:19 am

Hi Siti. I'm so glad you posted. I'm 58 now but I went through infertility around your age too. You are not alone. I have been posting about how my husband is symptomatic but won't go to the Dr. It's nice to meet you.
DH T2 N1b M0. 3/15 positive nodes.
Stage IIIA moderately differentiated adenocarcinoma.
Tumor size 6 cm.
Left hemicolectomy 10/26/15.
FOLFOX 11/30/15 to 5/2/16, full 12 cycles.
10/3/16 CT scan clear.
11/10/17 CT: "Focal opacity along the left lower lung, 7 mm. Two small peripheral opacities along the right lower lobe, 2 to 3 mm. A few small to mildly prominent left-sided central mesenteric nodes, up to 13 mm.
June 2019: NED.
2020: NED 5 years. 4 mm lung nodule on CT

nmorgen
Posts: 82
Joined: Sat Nov 05, 2022 10:31 am

Re: 4 years

Postby nmorgen » Thu Mar 09, 2023 1:03 am

Congratulations on your husband being ned.

I’m not sure about having a child at that age. It can be hard and it is a lot more dangerous for the child. You could try looking for an egg donor. You could also try fostering or adoption. You don’t have to give birth to a child to be their parent. Whatever you choose I wish you good luck.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, Lynch Syndrome
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9
2/13/23 Yervoy& Opdivo CEA 3.4
3/7/23 ct scans no change
3/9/23 Opdivo CEA 3.4
4/4/23 Opdivo CEA 2.3
6/1/23 Opdivo CEA 2.6

I_will_fight
Posts: 148
Joined: Mon Jun 29, 2020 3:38 pm

Re: 4 years

Postby I_will_fight » Sat Mar 11, 2023 1:37 am

Congratulations on your husband NED status.

For what's worth, I know several women who have given birth to healthy children well past 40 (it was not always easy, but they did it). This is becoming relatively common in my country (Spain).

So, I don´t think 40 is terribly late to attempt to have children, but I imagine that with your husband cancer there are many other considerations at play.

Some patients freeze their ova/sperm before treatment, not sure if you had an opportunity to do this?

Of course a sperm bank is a possibility, have you discussed this with your husband? I dont think cancer should deprive you of your dreams (but I do realize this may be difficult for both you and your husband)

Good luck, whatever you decide
46 yo male Spain
06/2020 - 6cm T3N0M0 CC splenic flex
3 and 4 mm lung ground glass
lymp 0/37
dMMR MSH6
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, optimistic surgeon.
11/20 - 4 x CAPOX completed.
12/20 - Clear colonoscopy
02/21 - MRI liver lesion unchanged.
11/21 - Clear CT
02/22- Colonoscopy: Sessil polyp 3mm
05/22- Clear CT
06/22- Negative Signatera
12/22- Negative Signatera
01/23- Clear CT
07/23- Clear CT, normal markers.
09/23 - Negative Signatera
01/24 - Clear CT

Siti
Posts: 269
Joined: Thu Aug 01, 2019 10:58 am

Re: 4 years

Postby Siti » Mon Mar 13, 2023 5:56 am

I am so incredibly moved by everyone's support and kind words. I read each of your replies several times and took the time to reflect over the weekend.

I feel like I don't deserve to talk about my struggles because I have so much to be grateful for...but I am slowly disappearing and I recognise my body is telling me that it has to stop because I am experiencing a host of negative physical and psychological symptoms/reactions that are really impacting my well-being.

I spoke to my gynaecologist last year, he says it's not too late to try for a child via IVF with my husband's frozen sperm. I asked him if he thought that my decision was selfish that I consciously choose to have a child knowing that he/she may not grow up with a father but he said he thinks it is not. However, he says I need to be mentally prepared that it will be an extremely challenging journey ahead with a high chance of failure, partly due to my age. I don't know if I am strong enough to do it (not my in current state of mind), also what if during my pregnancy or childbirth my husband has a recurrence? Am I capable of juggling between his medical care and taking care of a baby at the same time?

Saltygirl -- I am happy you're going to Mexico with your son! :) Your status is similar to my husband's, are you on maintenance chemo? To answer your question, the reason I can't talk to my husband is because one of my worries is his death, how am I to talk about his passing when he's trying his best to be optimistic? Btw, I too have lived across 3 continent and managed to navigate through life in different languages... but I have no idea why I feel so weak and defeated now!!

Claudine -- I have been following you/husband's journey for quite some time. You've been truly remarkable and a great member of this forum. Thank you for that :)

Pantufla -- I read about your husband's situation. I know exactly how you feel! It's incredibly frustrating but I always tell myself that we can't control their lives. I told my husband that I am committed to provide him with the comfort and tools needed to stay healthy, but if he decides not to adopt it, there's absolutely nothing more I can do!

beach sunrise, nmorgen & I will fight, thank you for taking the time to reply :)
DH (54) DX on 5/7/19
Sigmoid|G3|LN:30/31|MSS|WT KRAS, NRAS, BRAF
7/19 PET distant LN para-aorta neck hip (0.5-1.5cm)
7/19 Lap resection
26/8 to 20/12/19 CAPEOX+Bev 7x
6/11/19 CT 3 cycle LN shrunk
1/20 Cap+Bev
4/20 TS-1+Bev due to bad HFS
NED 4 years
8/23 PET recurrence chest LN growing since Feb. CEA May(4.5>5.1>5.9)
9/23 Stopped Bev, CEA Sept(8.7) Radio 17x
11/23 PET 1+ supraclavicular LN, CEA (3.4>2.5)
12/23 Lymphadenectomy
1/24 Narrow margins, 1/5 +LN, 1.4cm +tissue, TMB (19)

aquarian_asian
Posts: 48
Joined: Wed Jul 07, 2021 7:07 am

Re: 4 years

Postby aquarian_asian » Mon Mar 13, 2023 7:10 am

Hi Siti - each one of our situation is different and difficult too. But don't loose your hope on anything. You decide and do what is best for you and your family. Our best wishes and prayers for you. Cheer up! .
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 4 years

Postby DarknessEmbraced » Mon Mar 13, 2023 7:37 am

Wonderful that your husband is NED! Always feel free to share your feelings here. *hugs*
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! :)

saltygirl
Posts: 165
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: 4 years

Postby saltygirl » Mon Mar 13, 2023 11:22 am

Siti,
No chemo or any other treatments since March 2021.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

Bianca10
Posts: 124
Joined: Thu Jun 29, 2023 4:46 pm

Re: 4 years

Postby Bianca10 » Fri Jun 30, 2023 4:09 am

saltygirl wrote:Siti,
No chemo or any other treatments since March 2021.

Hey @saltygirl, forgive me I’m new to this forum so could be doing this all wrong, oh the off chance I haven’t I’ve been inspired by your journey and was curious as to where you got treated? And if you are kras mutant?
In the UK, and generally PALN are received negatively and a bit doom and gloom but you’ve had an incredible response to treatment, without surgery!!

Bianca10
Posts: 124
Joined: Thu Jun 29, 2023 4:46 pm

Re: 4 years

Postby Bianca10 » Fri Jun 30, 2023 3:55 pm

Siti wrote:Hello everyone,

It has been about 4 years since my husband was diagnosed with stage 4 cancer and given 2 years to live. He recently did his CT scan and received NED status :) My husband do suffers from manageable side effects because he's still on maintenance chemo but 80% of the time we live a normal life :)

I just turned 40. As a woman, my "deadline" for having a child is pretty much up and no matter how hard I try, I struggle to see a future except being alone without a family. I feel incredibly guilty to discuss this but having to internalise my feelings has been extremely difficult...I can't discuss with my husband and my friends are "young" and busy with their families so they do not empathise. I have seen multiple psychologists but did not help.

I know it's unfair to discuss this because so many of you are going through an extremely difficult time but I would be so grateful to receive replies or DMs if you're able to share with me how you / your family cope since diagnosis.

To end on a brighter note, we are so thankful for my husband's continuous good health (I thank god every day) and ever so grateful for this support group -- you guys have been my source of light on my darkest days.

Siti


Hi Siri

Hope you’re ok.
I can emphasise with your feelings. It’s my partner also affected.
If you would ever like to chat please feel free to DM me x


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