New and in need of hope for mom

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hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

New and in need of hope for mom

Postby hopie » Fri Jan 18, 2019 3:00 pm

Hello,
(Sorry in advance for potential language problems, not a native English speaker.)
Before I start telling mom's story, I want to thank everyone who took the time to share their stories and took care of each other. I have been reading every single thing I can on colon cancer since the day I started worrying that mom might have it and I brought myself to the point of going completely insane. Finding this forum helped immensely. Thank you all.

I've moved abroad 2,5 years ago to do a PhD and this December, my mom (62) was hospitalized for stomach pain (which she mistook for gas or having caught a cold) and vomiting on Dec 14. After vomiting, she went to the ER. They did a CT Scan and a blood count. She had bowel thickening at the sigmoid section and some swollen lymph nodes as well as high CRP (38.9), high WBC (15,64), high Neutrophil% (87%), low Lymphosit% (9%), high Neutrophil (13,60), and low MPV (9,50). Their diagnosis was diverticulitis; she stayed in the hospital for 6 days and they treated her with antibiotics. Her liver looked normal. She took two strong ones for about 20 days, and during this period her CRP levels reached as high as 223, but then got lower. They let her go home on Dec 20, with a follow up on Dec 27, and Jan 4. On Jan 4, she got another CT and a blood count. CT Scan showed that there was no change in her bowel wall or her lymph nodes. Additionally, there was "an 8mm hypodense lesion that held peripheral contrast" (not sure if this is the proper way to translate it). Her blood count was better overall; high CRP (18,1), high PTL-Trombosit (527), and low MPV (9,40).

I got back home on Dec 27th as scheduled for the winter break. I missed her first follow up, but was there for the one on Jan 4. I didn't like the general surgeon or the gastroenterologist at this first hospital, so I found another gastroenterologist for her colonoscopy. I've read her reports and one of them mentioned "Colon Ca." I will never forget that moment. I've read pretty much anything written on diagnosis differentials on CRC and diverticulitis. Her lymph nodes suggested CRC. She got a colonoscopy on Jan 8, which confirmed CRC. Her doctor came out and told me to sit down before he gave me the news. I will never forget that moment either. He told me that "it doesn't look like it has metastasized to other regions." But he had also told me that her clinical situation doesn't look like CRC either when we talked on the phone before colonoscopy, so I wasn't relieved. He said he didn't think much of the liver lesion since cancer doesn't really work that way. He referred us to a general surgeon, who was just that--so I found her a colorectal surgeon. The biopsies they took came out as moderately differentiated adenocarcinoma and MSS.

This new doctor said her lungs were not examined really, so she got a Thorax CT and an upper abdomen MRI. Thorax CT report said that they saw some infection in her lungs and a 6.5 mm subsolid nodule. I've stopped reading her reports after seeing her Thorax report, because I was losing it. So all the other information I got after that point is what I heard from her surgeon. After he got the MRI report, he said that they "did not observe anything that should change our operation plans." She was seen by a lung specialist before surgery to get a check for surgery, and was told to come back 3 months later for that nodule in her lungs.

The colorectal surgeon also said that they saw another lesion in her liver (he used the word "superficial") of a similar size (I'm guessing in the MRI?) and that it looked like they could take both of those liver lesions during surgery. But before surgery, he said he was planning on doing a laparoscopy and his primary goal was to take the tumorous parts of the bowel out and that he would not turn it into an open surgery to operate on the liver as well. Her surgery took about 5 hours, he removed the tumorous parts of the bowel along with "lots of" lymph nodes and he also had to remove the left parts of the ovary because tumor had "stuck" to those parts as well. He also asked our permission to add a port for chemo, which we confirmed. He said that he didn't touch the liver; there was a third lesion and it was bigger. He said that she'll get chemo, then they'll try to ablate them, or she might have to get another surgery. Now the thing with Turkish is that it's not clear whether "might have to get another surgery" means "if she's lucky, her lesions will shrink and she might get it," or "we anticipate chemo to solve this, but it might not so we'll see." I remember him mentioning about the necessity to move a part of the liver, but it's all vague. And I'm terrified to ask.

A sidenote on this surgeon: he's terrific in his job, but socially, he's absolutely terrible. I'm ready to hate everyone right now, and even with this state of mind, I can tell that he's not trying to be mean or rude. He's just not very sociable or empathetic. Every time I ask him a question, he gives a cold, simply factual answer and I do not know what to make of them. For example, when mom told him that she was worried about coughing post-surgery because of her fear of messing with her stitches, he told her she can cough. Mom said they hurt and they feel like they're tearing up. I said "she's asking if you did a tight job!" to which he could've easily respond with "hell yeah." Instead, he said "we'll stitch them back up, don't worry about it." He sincerely seemed to think that that was the helpful thing to say. Long story short, he's not very responsive to questions and I cannot read him at all. For her oncologist, we had two options and we chose the one several people had recommended. Both oncologists suggested my mom to get a port. We will meet with her oncologist two weeks after her surgery--haven't met her yet.

Right now, we're still at the hospital. She had her surgery 2 days ago (~52 hours). Yesterday, she walked and consumed liquids. Today she ate solid food, pooped a little, and can walk on her own, although slowly. She's not very happy about the lung exercise balls (don't know what they're called; you're supposed to send 3 balls in tubes up and down by inhaling and exhaling), but she's trying upon some nagging. I'm so proud of her.

But... I'm also scared to death. I'm scared of losing her. I'm scared of seeing her suffer so much that I will get to a point where I will be OK with letting her go. She has always been a very kind person, sometimes to the point of being a complete people pleaser for her family. I can feel her stress about being a burden. She's not. Nothing is worse than not having her. I'm constantly cheery, attentive, and motivated, which I feel is helping. But I'm so scared that she will give up because she will think that she's stopping me from living my life. Except, she is my life. I was initially going to come back to Turkey to do my fieldwork this summer and stay here for 2 years. After finding out about her diagnosis, I took a leave of absence for this semester. It didn't change much for me, but I can tell that it's eating her up. I will try to do my best to have a life in addition to taking care of her once we know everything and have a game plan. But I don't know how to approach her fear of being a burden. I do not let everyone into her room (she has LOTS of visitors) because it's flu season--I ask people to not approach her too closely. Even that upsets her. She thinks it will upset people ("they came all the way to see me, it would be rude") and feels uncomfortable. I don't know what to do. I do think that this is a bit of a cultural thing, but any advice is welcome.

This post ended up being a bit long. Even though I'm surrounded by family and my partner, I feel desperately lonely. I'm tired of constantly trying to explain things to people who do not share my newly gained vocabulary or my heart ache. Thanks for reading.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: New and in need of hope for mom

Postby LPL » Fri Jan 18, 2019 4:42 pm

hopie, a warm welcome to this forum!!
You wrote:
He referred us to a general surgeon, who was just that--so I found her a colorectal surgeon.

That was SO Good to hear - Good for you!!

Your mother’s surgery sounded familiar. If you look at my signature you can see what happened at my husband’s 2nd surgery. (The 1st was just to save his life as he was totally blocked). Tests before the 2nd surgery gave the impression that there was one met in the liver and that it would be removed at the same time as the colon tumor. This did not happen. At the surgery they saw more then one met in the liver. That changed the surgery. Because in Europe (where I live) the protocol is for >1 liver met, to do 4-6 chemo before surgery/resection of liver mets and then chemo after (6-8) up to a total of 12 sessions.
Your mother sounds like a very lovely person and .. yes she probably need you to help her get through this.
Please continue to read good stories here.
All the best to you!
P.S. please know that many people have ‘lung things’ seen on CT-scans, it does not have to be something to worry about.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: New and in need of hope for mom

Postby hopie » Fri Jan 18, 2019 5:06 pm

Thank you so much LPL, I'm hoping it's nothing too, but every time I tried to be hopeful ("it's diverticulitis," "no distant mets," "lymph nodes might go away," "her liver thing might not be a metastasis; it CANNOT just appear in 3 weeks!", "ok--they'll remove it," "ok--they'll remove them," and finally "they <might> remove them") it kind of blew up in my face. I decided to adopt a one step at a time approach. And before you mentioned it, it didn't occur to me that they might have a different protocol here too--most things I've read were US-based. Hopefully, we'll know more soon. I just can't wait to start. Waiting, not knowing, not knowing what to hope for are the worst.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: New and in need of hope for mom

Postby Punky44 » Sat Jan 19, 2019 1:00 am

I’m so sorry about your mom. We are in a similar boat—I am the caretaker for my mom and I have the exact same feelings of fear and worry you describe. You sound like you are very well informed and are an excellent advocate for her which is great.

Like you, I sort of “put my life on hold” aka quit my job to take care of my mom and while it’s been quite a change, I don’t regret it at all bc like you said, “she is my life.” I also get overprotective of her when it comes to germs and she gets annoyed with me.

You and your mom will be in my prayers!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: New and in need of hope for mom

Postby hopie » Sat Jan 19, 2019 2:06 am

Punky44, I'm sending my best wishes too. Does your mom work? How do you keep her busy?
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: New and in need of hope for mom

Postby stu » Sat Jan 19, 2019 5:57 am

Hi ,
I will let you read my signature to see my mum’s story . Far from straight forward but she got there .
I took the best part of a year out of my life . I have no regrets. Plenty of additional work though . :D My sister would have loved to have done the same but financially it was not possible . If it’s possible and you can pick it up again then it’s not so long a time . Additionally you are not doing it all the time . There will be plenty of time to keep your own life going . I had both parents staying wit me as my dad had a stroke two weeks before . But we managed .
Take care ,
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 .

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: New and in need of hope for mom

Postby hopie » Sat Jan 19, 2019 7:49 am

I don't know if it's my connection or that I'm a new member--I don't see my former post. Sorry if I'm repeating myself:

Dear Punky44, thank you both so much. I'm sending good energies your way too. It's very helpful to see similar paths and concerns. I legitimately get mad at people if they are not as considerate as they should be.

And dear Stu, I'm sorry to hear about your dad. Oddly, my dad got sick two weeks age as well. His problem is a bit different, he consumes lots of alcohol so now he has anemia caused by that. His sister is taking care of him as I'm fully focused on my mom. I'm glad you have a sister. I have my aunts and cousins by my side and it's helpful.

I have a question about this process of care-taking. How do you keep your moms busy? My mom's an architect and she works at the municipality, but I'm guessing it won't be possible for her to get back to work safely--an open office with lots of random people. What do you do? How do you spend your time?
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: New and in need of hope for mom

Postby stu » Sat Jan 19, 2019 11:57 am

Very good question . I previously was an occupational therapist so “ activity “ was my business . However you need to factor in treatment requirements and what they are able to do .
Your mum may be able to return to work as a small subgroup of people manage well on treatment and it’s their lifeline . However her hand function may well be affected by chemo and given her job that may limit her . After chemo that may subside .

We did projects . Sometimes she was more the decision maker and I carried out the tasks but where possible she did it . We took normal life and amplified it . She needed new cushions so we went selected fabric. Learnt through “you tube “how to make them and set about the task . Now ten years later they are in the attic but not the bin as they hold special memories . Other times we made cards instead of buying them . We selected plants for the garden and put in extra effort . We had day trips when possible . I made intersting meals and paid attention to what she showed interest in eating . We did decorating projects . I did the task she directed . But also importantly we still celebrated life . All the grandchildren’s birthdays anything became an event . Most importantly we had an end goal after each cycle of treatment to do new things . She has kayaked and done things she has never done before with her grandchildren . But whatever is around your lives use it , pad it out but stay connected to life . Intersting films , etc .
That’s my input anyway .
Take care ,
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 .

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: New and in need of hope for mom

Postby hopie » Sat Jan 19, 2019 12:54 pm

Those are very good suggestions! I've been trying to figure out what she'd like and what she'd be interested in, but crafty things don't seem to interest her (which sucks because sewing is my anti-depressant). The only thing she was interested in was learning to play the piano, but with her fingers potentially numbing, I'm not sure if that will work either. But then again, maybe her treatment design won't have that effect on her. I'm in desperate need of getting some sort of control over this to remain sane but every step seems to entail waiting and not-knowing-yet.
My partner reminded me the thing they say on the airplane: "put your mask on first, <then> put your kid's." I'm not in a mood to worry about myself but I guess that's also included in the package now. What do you do to keep yourself strong? How do you recharge?
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: New and in need of hope for mom

Postby LPL » Sat Jan 19, 2019 4:54 pm

hopie, this phase, this waiting... is what feels the worst for me (I’m a caregiver). When getting to know the facts, having a plan, it becomes easier - something to follow. I know vise people say that it is no use worrying before you have all facts.. I want to but for some reason I can’t follow that good advice.
For now “BREATH... repeat as needed” (a quote from our moderator CRguy). Try to lower your shoulders... Things will get better when you have a plan.
All the best to you!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: New and in need of hope for mom

Postby Punky44 » Sun Jan 20, 2019 8:16 am

Jolie, my mom is retired but she has so many things to keep her busy that it does feel like treatment has been flying by.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

hopie
Posts: 90
Joined: Fri Jan 18, 2019 12:15 pm

Re: New and in need of hope for mom

Postby hopie » Tue Jan 22, 2019 1:33 pm

Thank you all so much. We got home today, she took a shower and is resting now. They found another met in her liver during surgery. The largest one was reported as "around 15 mm" in the MRI report, but in the surgery log it says "around 20 mm" in Segment 8. Others are 6 and 8mms, one report says Segment 2 or 3. I'm not sure what to make of them. We're still waiting on the pathology results and we'll meet with the oncologist next week. But post-operation, her surgeon told me that we'll start with chemo, then try ablation, then maybe surgery. I know I should've asked him more questions, but he's usually dismissive ("you should talk to her oncologist").

Is it at all possible to achieve cure with chemo alone? Or ablation?

Or does it depend on node involvement? My pessimist side is telling me that they're trying to decide if surgery's worth it... I'm terrified to death that we'll meet with her oncologist and she will tell mom to enjoy her time while she can.
Caregiver to my super-mom (62), diagnosed Dec 2018
Sigmoid colon, Stage IV
G3, Poorly differentiated adenocarcinoma (5,5 x 4 x 1 cm)
T4N2bM1
13 positive out of 23 lymph nodes, largest one 1,8 cm
4(?) mets in liver, located at Segment 3 & 7, largest one 2 cm
LVI & PNI present
Clear surgical margins
MSS, KRAS G13D mutant
Laparoscopic anterior resection, Jan 2019

First chemo 11 Feb 2019 (Folfox). 25/2/19 Folfox + Avastin.


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