I need help supporting newly diagnosed friend

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kkm9
Posts: 4
Joined: Fri Mar 20, 2015 4:55 pm
Facebook Username: karen.mickleson

I need help supporting newly diagnosed friend

Postby kkm9 » Fri Mar 20, 2015 5:19 pm

Hello.

A close friend, 80, just told me her colonoscopy today found a ‘large colon cancer and polyps’. Although I’m a fifteen year survivor of esophageal cancer who actively used forums in 2000, I don’t know enough about colon cancer to advise her what questions to ask of her physician. All she knows is she’ll ‘hear from a surgeon’s office to schedule a surgery’.

She’s not a detail oriented person—didn’t know what ‘staging’ meant. I need some basic understanding to help frame and research questions she needs to ask the surgeon:

—Are there different types of colon/correctol cancer? For example, adeno vs squamous, as in esophageal?

—Is surgery automatically the first action taken? Is it commonly followed by chemo and/or radiation?

—How is staging established and what website best explains it?

—Which websites are the most inclusive and comprehensible resources for newly diagnosed patients?

—If this forum is in England, do any of you know which colon cancer forum in the U.S. is most active?

Thank you for any ‘orienting’ help you can provide.

Best,
Karen in California

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: I need help supporting newly diagnosed friend

Postby JDinNC » Fri Mar 20, 2015 7:28 pm

{bump}
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

Nik Colon

Re: I need help supporting newly diagnosed friend

Postby Nik Colon » Fri Mar 20, 2015 7:31 pm

Staging, I will find a link. First try not to worry or overthink. When they go in have someone along to take notes as alot of info will be thrown out which u will probably not know at the time. I will brb to update


Nik Colon

Re: I need help supporting newly diagnosed friend

Postby Nik Colon » Fri Mar 20, 2015 7:39 pm

It can be in the colon, rectum, or both. Until they do ct or pet they cannot tell if it spread. If It's Just in the colon they will not know stage until surgery. If it's beyond the colon it's 3 or 4, 3 if regional nodes, 4 if distant or other organs.

Nik Colon

Re: I need help supporting newly diagnosed friend

Postby Nik Colon » Fri Mar 20, 2015 7:42 pm

Also chemo will depend on stage. Surgery too, immediate surgery if blockage, if not they may do it b4. Alot of factors, just giving the gist, onc will decide.

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: I need help supporting newly diagnosed friend

Postby rp1954 » Fri Mar 20, 2015 7:57 pm

Might read Whiteswan's posts about her aged mom. A few blood tests beynd CEA aren't standard or automatic but can be especially useful: CA199 with ESR, vitamin D. LDH should/may be part of the basic bloodwork but some drs/labs don't include it.

Cimetidine before surgery has been an extraordinary lifesaving opportunity for some here.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

kkm9
Posts: 4
Joined: Fri Mar 20, 2015 4:55 pm
Facebook Username: karen.mickleson

Re: I need help supporting newly diagnosed friend

Postby kkm9 » Fri Mar 20, 2015 11:38 pm

Just a note of thanks to those who have responded so far. It's late here in CA and I'll investigate your leads in the a.m.

The most important thing now is finding someone to accompany her to her appointments, as suggested. I can't go be with her, but indeed she needs that.

I will appreciate your posts and get back later.

Best,
Karen

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: I need help supporting newly diagnosed friend

Postby orcasres » Sat Mar 21, 2015 12:13 am

Hi, Karen,

I have an 85 year old mother and I have been thinking about how I would handle this kind of situation with her.

First to address your questions, this is a US site, but we have participants from many countries on here. The advice of cancer patients and survivors does not replace medical advice, but it certainly gives you a more complete and realistic picture of what is involved. And this is a VERY supportive group.

While surgery is often the first treatment for colon cancer, some colon cancer can be treated with chemo first to make the surgery more successful by shrinking the tumors and often rectal cancer treatment starts with chemo and radiation. Surgery is usually considered the "cure" for cancer, but sometimes it is not possible and other treatments can be very successful in providing reasonable quality of life for many years. Each case is very different.

I find that the American Cancer Society site, http://www.cancer.org, gives good information on CRC staging.

Knowing my mother, having someone go along to the appointments would be critical. Actually everyone with a cancer diagnosis is recommended to do this, since you are not always thinking clearly or may just not hear everything accurately.

Some chemo regimens, including a common first line one called FOLFOX, can include drugs that might be difficult for an older person to tolerate. All chemo is obviously toxic, but certain pre-existing health conditions might make it difficult for your friend to tolerate chemo. I assume that whoever is treating her will have all of her medical history, but sometimes things get lost with older patients, so it is important that all of her history is made available. All of that being said, I took my chemo treatments at the same time as an 84 year old gentleman who, like myself, had to take a ferry every two weeks to get treated since we both lived in the San Juan Islands up here in Washington, and he seemed to be taking it quite well, better than I did toward the end.

A cancer diagnosis is like drinking out a fire hose, so it is wonderful that you are trying to help your friend get her hands around it.

Good luck and keep us in the loop. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

kkm9
Posts: 4
Joined: Fri Mar 20, 2015 4:55 pm
Facebook Username: karen.mickleson

Re: I need help supporting newly diagnosed friend

Postby kkm9 » Sat Mar 21, 2015 11:33 am

Thanks, Lois, and congratulations on your ongoing wellbeing.

I'm so grateful for all the input. I got an email this morning from someone who lives about an hour from Portland, and may be able to make contact with my friend.

Is anyone familiar with the Portland Kaiser physician offerings re: onc and surgery? She and I are both retired Kaiser psychologists from the California system, where I got great care for my EC here in Marin County. But I know nothing of the quality or choices of the Portland, Oregon system.

I'm going to call them Monday to see if I can make contact with their social work department. There may be someone there who can accompany her to appointments.

If anyone has ideas on how to suss out care issues at Portland Kaiser, let me know.

Best,
Karen

yiayia
Posts: 32
Joined: Thu Feb 19, 2015 4:45 pm

Re: I need help supporting newly diagnosed friend

Postby yiayia » Sun Mar 22, 2015 3:29 pm

Hi, Karen. When my wife was diagnosed this past Labor Day, we were thrown into a whirlwind of emotions, tons of new terminology, and so much information that we couldn't think for a few days. I got a clean notebook and a supply of pens so I could write down everything they were saying so we could read over it later, do some research, and form coherent questions. I knew for us that it was just too much info to take in and process intelligently when mixed with the emotional stuff. I found this forum and read every day, multiple times, so I could get real information from people "in the trenches". They didn't know it, but the folks here were answering my questions, informing my responses to the healthcare team, helping me be positive and reassuring with my wife, and convincing me that our world had not just ended.

So, I found that writing everything down a huge help for both my wife and for me. Sure didn't hurt when they saw me coming with my notebook in hand! The surgeon even wanted to know what I was writing - I told him, "everything". Peace to you and your friend.
Caregiver to wife
Dx CC Stage 2B Labor Day 2014
T3N0M0 Stage 2B Resection 9/14
XELODA 10/15-2/15 - F/U Colonoscopy 2/15: Clear
Resume Xeloda 3/15, 3 more cycles.
Endoscopy 7/15: Clear. PET Scan 8/15: CLEAR! NED! Some concern @CEA Level
10/15: CEA rising. 11/15 CT Clear. CEA still rising.
2/16: 1 yr colonoscopy: Clear. CEA still rising.
3/16:CT shows hydronephrosis, 3/16: PET lights up - Recurrence
4/16: Nephrostomy, begin Folfox

kkm9
Posts: 4
Joined: Fri Mar 20, 2015 4:55 pm
Facebook Username: karen.mickleson

Re: I need help supporting newly diagnosed friend

Postby kkm9 » Mon Mar 23, 2015 6:45 pm

Thanks, ylayla. I'm currently trying to find her a patient navigator who can be her note taker. And, I'm doling out links to her slowly, in a hopefully more digestible pace.

Your wife is lucky to have you there!

Best,
Karen

bitchslapped
Posts: 1538
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: I need help supporting newly diagnosed friend

Postby bitchslapped » Sat Mar 28, 2015 2:57 pm

Your friend is fortunate to have you. Looks like you are off to a good start. It all can be overwhelming & then there is the distance factor between you & your friend which complicates coordination of effort. In starting w/the basics you might try http://www.nccn.org/professionals/physi ... elines.asp
Also there is a site http://www.navigatecancerfoundation.org/. Though I have never used this particular site, based on your questions it sounds like it would be very suitable in your efforts for guidance in helping your friend.
Then, there is us here, but seldom is one resource enough.

Let us know how your friend & you are coming along.

Best Wishes
Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia


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