Can someone help please.

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Hopefullhetti
Posts: 1
Joined: Thu Nov 28, 2024 11:44 am
Facebook Username: Becca Oliver

Can someone help please.

Postby Hopefullhetti » Thu Nov 28, 2024 12:04 pm

Hi guys in July this year my husband (37) was diagnosed with stage 4 with mets (2 on liver (they said specks) and node on right lung (1.3cm) he had a 6cm tumor (which has been removed with a stoma for life.)

We had a consultant that told us multiple times "This is not a death sentence" "there's so many ways to fix this" giving us a list of all the ways. That consultant left the trust (UK hospital) the second consultant (who actually did the operation) also said there's hope and that's why he stepped forward to do the operation. Saying the cancer in the liver and lungs are "low level" (exact words) (letters state 'low grade') and they can be treated in many ways.

Then we had the appointment with the oncologist... He told us 6-24 months was the life expectancy for my husband. This absolutely blew us away as we were told since July there's so much hope. We've already asked for a second opinion but can the oncologist be right?

He said the consultants should never have given us that hope? We're so confused. Had anyone else been in this situation? Could the oncologist just be wrong?

Any words of reassurance or anything would be great thank you.

zephyr
Posts: 399
Joined: Thu Aug 18, 2016 7:31 am

Re: Can someone help please.

Postby zephyr » Sat Nov 30, 2024 12:09 pm

I'm glad you've found a place to ask questions. So that you know, we are not doctors and are not qualified to give medical advice. For the most part, we are patients and caregivers just like you and your husband, but there's a lot of personal experience here. I think if you put us all together, we've seen it all.

We may not have enough information about the specifics of your husband's situation to give you any solid guidance, but know this: there are a lot of us here with lung and liver mets who have been around for years, decades even. Stage 4 is not the death sentence it once was, but it might be a life sentence. I don't say that to discourage or scare you, only to be realistic. Some people beat Stage 4, but most learn to manage it like any other chronic illness. Based solely on what you've written, it seems you've landed with a doom-and-gloom oncologist who has lost all enthusiasm. If possible, try to find an oncologist who wants to be your cheerleader and is willing to think about possibilities.

I'm sure someone with a lot more experience than me will be along soon. Meanwhile, it might help if you would give us an idea of what treatments have been suggested to "fix" it.

You absolutely have reason to hope: don't let go of that.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

crikklekay
Posts: 145
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Can someone help please.

Postby crikklekay » Sat Nov 30, 2024 9:53 pm

My husband’s oncologist likes to remind us that he is a person not a number. She stresses to focus on John, and the goal of treatment with curative intent. Your husband is young, and hopefully in good health. He should be able to handle the surgeries and whatever treatment he receives after, unless there is something medical throwing a wrench in things. Getting a second opinion sounds like a good idea. You want someone you’re comfortable with and can trust.

I wish I could give you more reassurance. The only similar thing we’re had happen is when a surgeon told John he was too fat to operate on so removing his liver met was a no-go. His oncologist refused to take no for an answer and found a teaching hospital over an hour away who had no problems removing the met. She knew removing it was his best chance of getting rid of it for good. So definitely get a second opinion!
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo
06/22 Scans show NED, on maintenance Avastin
09/24 Mesenteric mass found

Pagola44
Posts: 422
Joined: Mon Jul 03, 2023 7:57 pm

Re: Can someone help please.

Postby Pagola44 » Sun Dec 01, 2024 4:04 am

Did something happen in that time? Did he not respond to treatment perhaps? Are you able to provide more information?
29m Male.
DX: CC, Right Hepatic Flexure, 4cm, T3, G2, M0
Stage III3B , Positive lymph nodes: (2/20)
Baseline CEA value: 1.98
LVI and PNI: absent
Surgical margins: clear
No lynch Syndrome or MSI
Primary surgery type: Laparascopic

I_will_fight
Posts: 164
Joined: Mon Jun 29, 2020 3:38 pm

Re: Can someone help please.

Postby I_will_fight » Mon Dec 02, 2024 1:46 am

Welcome, and sorry about your husband´s situation.

Please don´t forget most of us are patients not doctors (although some here have read a quite a bit about the disease, treatments, prognosis and so on)

There are two types systemic treatments for colorectal cancer: chemotherapy and immunotherapy

The former is the "standard of care" it can be effective on its own or sometimes it can enable a second surgery of the metastatic sites (in the case of your husband liver and lung),
The latter (immunotherapy) is not standard of care, it is a lot more expensive and not useful for all patients, so oncologists can be reluctant to prescribe it, but when it does work it often works work very, very well.

In order to find out whether your husband is likely to benefit from immunotherapy the oncologist should order some tests : MSI-high (also called dMMR) and the mutation burden.

https://colorectalcancer.org/treatment/ ... nstability

Patients as young as your husband (specially if gastronitestinal or ginecological cancers appear to run in his family) have a good chance of being MSI-high and thus elligible for inmunotherapy.

Good luck

Javi
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

utahgal7
Posts: 254
Joined: Fri Sep 11, 2020 12:04 pm

Re: Can someone help please.

Postby utahgal7 » Wed Dec 04, 2024 8:22 am

Hopefullhetti,

Welcome to the forum. IMO, I don't think an oncologist can accurately predict life expectancy because everyone's cancer progression is different. Zephyr is right that Stage IV disease is no longer a death sentence. People with Stage IV cancer are living longer and new treatments are being discovered daily. I also agree with finding a more optimistic oncologist. It could make a difference.

Personal story, my first oncologist told me that I would live 2 years max. I have been alive 4.75 years since diagnosis.

Don't lose hope and keep fighting.

Good luck to you and your husband,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

Nor Cal
Posts: 95
Joined: Sun Dec 06, 2020 8:18 pm

Re: Can someone help please.

Postby Nor Cal » Sun Dec 08, 2024 4:01 pm

I hope the oncologist explained that they were quoting from overall (and somewhat dated) survival statistics averaged across all Stage IV cases, and not making a prediction as to your case. Finding it when the mets are small is helpful. His age is helpful. Just make sure you get the right tests (as others have mentioned) to determine available treatments. And attitude matters. Stay positive, vigilant, and hopeful as you can. Best wishes.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 65 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2


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