Newly Diagnosed - Broken

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brokenwings
Posts: 9
Joined: Mon Jan 07, 2019 1:50 am

Newly Diagnosed - Broken

Postby brokenwings » Mon Jan 07, 2019 3:24 am

Hello everybody...
I was diagnosed with stage IV colon cancer last week, after quite an ordeal (I have a met in my ovary so doctors thought it was ovarian cancer at the beginning)... Then during a colonoscopy they found a mass in my sigmoid... And I got a colostomy (great).
For the time being, I only have mets in my peritoneal surface (I hope I'm making myself clear since English isn't my native tongue)... My doctors suggested chemo + cyto reductive surgery + chemo...
That's for the "objective" part of the story...
From a subjective point of view... I'm shattered into pieces... Like sooo many of you, I'm well under 50 years old, I didn't have any symptoms, not a smoker, not even a drinker !
I have a permanent feeling, like Death were breathing just upon my shoulder... I saw the stats on the internet, I read the In Memoriam here.... I can't fight back... I'm just trying not to drown in my own ocean of tears... I've got nothing to hang on to, like, "Oh, it's not so bad, it's stage I" or "Oh, it's not so bad, 80% of people with you condition make it for at least 5 years" or " Oh, it's not so bad, this type of cancer never metastasizes." And then there's this stupid peritoneal carcinomatosis, which won't go away with normal chemo.... "And it's a factor of poor prognosis in patients with colon cancer".
Why ? Why is this happening to me ? Where did I go wrong ? Why am I counting at age 37 how many years I still have ahead of me ? Why are we all going through this ? What have we done to desserve it ?
I admire you Americans so much... you're so brave, so restless, such warriors... This is why I'm writing in an American forum... Although, my attitude right now is just the opposite... I feel like a little girl having a nightmare and desperately looking for Mum to reassure me, to tell me: "Go back to sleep, baby, it was just a bad dream".
I'm sorry for all my negative thoughts... I'm just trying not to drown....

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ginabeewell
Posts: 64
Joined: Wed Oct 24, 2018 10:30 am

Re: Newly Diagnosed - Broken

Postby ginabeewell » Mon Jan 07, 2019 12:54 pm

I think many of us feel as you are feeling upon diagnosis. Like you, I am young and have no risk factors. To suddenly be stage 4 is a huge shock and the first oncologists I met didn't do much to help me feel better.

Two things that helped me: I read the book Radical Remission and that helped me to see what was in my control and what I could do to help myself heal.

I also met with four different oncologists before I met someone whose energy and optimism matched my own. The first three all seemed to think the best they could do was keep me alive for 2 years.

I've had a great response to chemo and that has helped me to regain my optimism. You just don't know which percentage you will fall in. I guess I decided I have always been in the top 10% so now would be a bad time to break my streak!

Good luck to you but do know your feelings are normal for where you are in the process. I do have periods of depression. But mostly now I am focused on the day to day and in good spirits!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan picked up typhlitis - hospital stay for 7 days - but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6!
1/14/18 Resume chemo (round #6), FOLFOX hold the Vectibix
2/18/18 Return to MSK post 2 more rounds to see if ready for liver resection / HAI pump placement

peanut_8
Posts: 2299
Joined: Sun May 25, 2014 1:31 pm

Re: Newly Diagnosed - Broken

Postby peanut_8 » Mon Jan 07, 2019 1:23 pm

Hi brokenwings

So sorry to hear about your diagnosis.

There have been lots of new treatment options for colon cancer in the last couple of years. Immunotherapy, targeted therapy and cancer vaccines. There are even more soon to be available. There's hope. https://www.cancer.org/cancer/colon-rec ... earch.html

Do you know your Microsatellite instability status? It can help determine which treatments will work best. Your oncologist should help you with this.
Here's a couple of links discussing MSI, if you're interested.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3037515/

https://fightcolorectalcancer.org/fight ... i-and-mss/

Might be kind of technical, but good to discuss with your onc.

Getting a cancer diagnosis can be devastating, but the good news is that you're not alone. There are lots of knowledgable, caring and helpful people here on Colon Talk.

Have you considered counseling services? Here's a link regarding services available. https://www.cancer.org/treatment/treatm ... vices.html

It's US based, but hopefully there is something available in your country, or maybe they have services available where you're getting medical care.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newly Diagnosed - Broken

Postby LPL » Mon Jan 07, 2019 1:36 pm

Dear brokenwings,
Welcome to the best forum! I’m a caregiver so can’t fully understand but I do, I do !! think this is such a warm place to be part of when something like this is happening.
Like you I am not living in USA and this forum has made me think outside the box when it comes to treatment in possible places outside my own country. Also to know what treatments that exist !
You are So correct - no one has done anything to deserve this - I understand how you think! I remember yelling out loud these same words ”What have we done to deserve it ? ”.
Please stay and share your journey, your thoughts. A lot of wonderful members will reply, I’m sure.
Edit: I see that Peanut has already started giving good info <3
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

brokenwings
Posts: 9
Joined: Mon Jan 07, 2019 1:50 am

Re: Newly Diagnosed - Broken

Postby brokenwings » Tue Jan 08, 2019 4:37 am

Dear New Friends,

Getting your replies last evening was like seeing a ray of sunshine in the middle of the dark. It felt so good to be « listened to » and supported… It really made a difference.

ginabeewell : Thank you for your kind words, you’re so full of life! I really appreciate you took the time to write to me. I’ll look for the book you recommended and I’ll try to take it one step at a time. To be honest, I’m terrified about my response to chemo… I’m just afraid…
As for oncologists, I have my surgeon and my medical oncologist. They’re both quite uptight, not very chatty and not very accessible… But, God, they’re effective… They managed to do so many things for me in such a short time, despite the Holidays… I think I’ll stick to them, but I’ll still try to get an appointment with a third and more human oncologist, just to have someone to discuss things with, to recommend a special diet and stuff like that…

peanut_8 : Thanks a lot for the links you’ve sent. I found everything very interesting, specially the research for a cancer vaccine…
As for Microsatellite instability status, my oncologist told me something yesterday… It was actually one of the rare moments with smiles, lately… He came to my room and he told me they’re doing some genetic test on my blood so as to know what sort of treatment I’ll get… So I asked him : « Genetic test? Are you talking about those unstable satellites? » And then the miracle happened : my uptight oncologist laughed! :mrgreen:
So to answer your question : I’m getting tested and I’ll get the results soon…
I’m also seeing a psychiatrist in the cancer centre where I’m being treated…
Thank you for your optimism and interest.

LPL : thank you for your support and warmth. I’ll certainly stay and share with you, it suddenly feels as if the burden on my shoulders were less heavy…

I’m going back home today and I’ll start chemo in a week or so… Do you have any advice on how to manage chemo symptoms?

Hugs,

Paola

dliu
Posts: 55
Joined: Sun Jun 03, 2018 7:16 am

Re: Newly Diagnosed - Broken

Postby dliu » Tue Jan 08, 2019 11:30 am

Hi Paola,

Sorry for the reason you are here. As a caregiver, my whole world crashed on me and, although I didn't get the diagnosis myself, I do sympathise with the feeling of hopelessness - but it will get better! And this forum is the perfect place to start.

My mum is currently on a chemo break, and from her personal experience I can say it was helpful not to eat foods she loved during chemo, because she has started being unable to stomach the foods she had during the chemo. She ate light and took it easy - we let her rest a lot and it was very helpful. Even now that she is off the chemo, taking a nap gets her back on track. The only department she wasn't outstanding in is the exercise bit - she stays home quite a lot. I hear exercising helps you regain your energies, and just helps with your general mood. She did swim a whole lot last summer though - sometimes up to 1 km per day! This was bang in the middle of her cycles, and helped her a great deal.

Also, not to be nosy so feel free not to answer, but are you a fellow Italian?
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

marshmallowjones
Posts: 9
Joined: Thu Jan 03, 2019 9:23 am
Facebook Username: Regina Kennedy

Re: Newly Diagnosed - Broken

Postby marshmallowjones » Tue Jan 08, 2019 12:55 pm

Hi BWings

I'm sorry to hear your story and your English is very good - possibly better than some of our own :D

Are you doing Folfox? They say 'everyone responds differently' which drives me crazy but the 1st treatment was my worst. Try to prepare lots of help day 3 (pump off), 4 and 5. I had mouth sores and couldn't swallow - The ONC turned down the Folfox a bit stating I was extrmely sensitive. I believe everything is open to tweaking meds with my ONC to have it be tolerable - we want to get the most amount of treatment for the best results. Hair generally doesn't completely fall out (yay) but did thin the most for me at treatment #1.

Nuelesta shot was not offered or explained to me at the end of treatment #1 so I showed up at treatments #2 and was turned down for terrible blood counts. I then 'qualified' as someone who needs the boost. Ask!
I was so annoyed and didn't know why I felt sooo awful before I showed up to get turned down. I'm a person who's much better off armed with information and what if scenarios.

Hope some of my recent experiences help to guide you thru next week.

User avatar
LPL
Posts: 458
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newly Diagnosed - Broken

Postby LPL » Tue Jan 08, 2019 2:15 pm

Brokenwings,
See my signature regarding possible reaction to steroids (delivered with chemo). Not nice. This is not something I hear about a lot here though...
i believe it is good advice regarding the exercise, just try to walk a little, get out of the house. I hope it is not too cold where you live :? And please tell your Onc what (if any) side effects you get.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage 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 for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

User avatar
juliej
Posts: 2904
Joined: Thu Aug 05, 2010 12:59 pm

Re: Newly Diagnosed - Broken

Postby juliej » Tue Jan 08, 2019 6:14 pm

brokenwings wrote:From a subjective point of view... I'm shattered into pieces... Like sooo many of you, I'm well under 50 years old, I didn't have any symptoms, not a smoker, not even a drinker !
I have a permanent feeling, like Death were breathing just upon my shoulder... I saw the stats on the internet, I read the In Memoriam here.... I can't fight back... I'm just trying not to drown in my own ocean of tears... I've got nothing to hang on to, like, "Oh, it's not so bad, it's stage I" or "Oh, it's not so bad, 80% of people with you condition make it for at least 5 years" or " Oh, it's not so bad, this type of cancer never metastasizes." And then there's this stupid peritoneal carcinomatosis, which won't go away with normal chemo.... "And it's a factor of poor prognosis in patients with colon cancer".
Why ? Why is this happening to me ? Where did I go wrong ? Why am I counting at age 37 how many years I still have ahead of me ? Why are we all going through this ? What have we done to desserve it ?
I admire you Americans so much... you're so brave, so restless, such warriors... This is why I'm writing in an American forum... Although, my attitude right now is just the opposite... I feel like a little girl having a nightmare and desperately looking for Mum to reassure me, to tell me: "Go back to sleep, baby, it was just a bad dream".
I'm sorry for all my negative thoughts... I'm just trying not to drown....

Paola,

I know exactly how you feel. When I was diagnosed it was as if I had inadvertently walked though a door I shouldn't have gone through. Everything was so unnerving, so scary, so black... But I dug down deep inside and found out I was a lot more brave than I thought. I wanted to survive and that meant taking a deep breath and figuring out the landscape of this frightening new world. I had to do research, read about new treatments, find the best docs, get second opinions, etc. It actually felt better to be doing something. I wasn't just a passive victim anymore, but a fighter who was willing to do whatever it took.

I know that no one can walk your path for you but please know you have legions of companions like me who are walking symbolically by your side. When you awake at three in the morning with that nightmare you can reach out your hand and know that one of us is thinking of you.

Hugs to you!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 9/14/2018, CEA<1

peanut_8
Posts: 2299
Joined: Sun May 25, 2014 1:31 pm

Re: Newly Diagnosed - Broken

Postby peanut_8 » Tue Jan 08, 2019 8:18 pm

Hugs right back to you Paola!!!

(still laughing about the unstable satellites :mrgreen: :mrgreen: :mrgreen: )
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

brokenwings
Posts: 9
Joined: Mon Jan 07, 2019 1:50 am

Re: Newly Diagnosed - Broken

Postby brokenwings » Wed Jan 09, 2019 12:49 pm

Dear New Friends,

Thanks again for your kind words and your advice.

Dliu: I'm glad chemo wasn't too hard on your mum. Thanks for your tips! Yes, I'm a fellow Italian! (Although I wasn't born in the US but in South America. Just to mess things up I'm currently living in Europe :)

Marshmallowjones: I still don't know what kind of chemo I'm getting... They're currently testing my blood... I think they'll either tell me before the end of this week or at the beginning of next week... Thank you for the information on Nuelesta (I looked it up).

LPL: Thank you for your advice on steroids. I'll talk about it with my oncologist. And I'll try to walk a little bit (even if it's rather cold!)

Juliej: Thank you for your touching, warm message. Thank you for walking with me. It makes the burden feel lighter.

Hughs,

Paola

Danielito82
Posts: 9
Joined: Sat Aug 11, 2018 1:53 pm

Re: Newly Diagnosed - Broken

Postby Danielito82 » Wed Jan 09, 2019 4:39 pm

Hi Paola,
I'm a fellow Italian too.....and like you I'm stage 4 CRC.
I've been diagnosed when I was 35 yrs and with 2 kids to raise my world

Danielito82
Posts: 9
Joined: Sat Aug 11, 2018 1:53 pm

Re: Newly Diagnosed - Broken

Postby Danielito82 » Wed Jan 09, 2019 5:04 pm

Hi Paola,
I'm a fellow Italian too.....and like you I'm stage 4 CRC.
I've been diagnosed when I was 35 yrs and my oncologist told me that my cancer spread to my liver and it was inoperable ... and with 2 kids to raise my world fell apart.
Like you I was wondering why....why me ..etc..and after having hit the bottom I began to climb again...and
After 1 year and 15 cicles of chemo I've done a liver resection ( that told me that was not an option ).
Now I'm living day by day hoping for new treatments to come !!!!!

brokenwings
Posts: 9
Joined: Mon Jan 07, 2019 1:50 am

Re: Newly Diagnosed - Broken

Postby brokenwings » Thu Jan 10, 2019 6:33 am

Hi Danielito82,

Thanks for your message and your optimism.
I'm glad you're doing better... I hope I've got your strength to climb again...
I'll try to live through chemo... that's step number one for now.

Thanks again to all of you who took the time to share your kindness with me these last days.

Hugs,

Paola

teacher2017
Posts: 213
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Newly Diagnosed - Broken

Postby teacher2017 » Sat Jan 12, 2019 8:16 am

Hi there-
I was you last September and just as devastated. I want to share with you what works for me- please please know that stats are old! They are at least five years old and include the old, those who refused chemo, those who died of other things and all different stage 4s! Please stay off the internet except for Facebook support groups- real support groups not the ones that are full of depressing posts. - Colontown and Blue Hope Nation are life savers for me. Chemo is not as bad as the stories people tell. Everyone is different! If you do not like your drs, change them! Go to a big cancer center/hospital- those people are experts and you need positivity not doom and gloom! You can do that yourself. My last piece of advice is when doing chemo, make plans on the off weekends to feel normal! Treatment will finish! Focus on the end- and try not to call this a journey, ift is a trip no one ever wanted to make and I feel like the end of journey has a negative connotation.

Take good care and try not to focus on the unknown. Focus on the things you are in control of!

❤️Lydia
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18


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