Husbands Supporting Their Wives

[Bob S]

My wife (56) of 19 years was Dx with stage 4b adenocarcinoma of the mid transverse colan in July. The tumor was 2.5 cm and invaded the adherent Omentum 0.2 cm. No evidence of mastatic carcinoma, Highly suspicious of capillary vascular invasion are identified, T-4b , N-0, M-X. The surgeon didnt say much except for "I know I got it all" We see the oncologist on the Aug 12, that's 5 weeks from surgery date.
My wife didn't read past the report where it said Low grade (moderately differentiated) and thinks all is done... I tried to explain that most likely the oncologist will want to do some sort of preventative cemo and she said she wont do cemo...hopefully that will change in talking to the oncologist. I tried to talk her into going to Gainsville or even Sloan Kettering in NY and she thinks with science today theres no difference... Im at witts end and dont know what to do to convince her that all is not good. I feel so angry and hapless that I want to scream, ive spent near every waking hour reading and researching and all it does is make me more worrisome. I apologize to this board but needed to really vent. Thank you for listening and God bless.

[peanut_8]

Is it possible to get your wife to join Colon Talk? Reading some of the folks struggles here might give her second thoughts about chemo. It has got to be frustrating for you.

[raym]

Given her staging and vascular invasion I would rec0mommend chemo. (in my non-medically trained opinion). Even though the surgeon said we got it all, there is/may be cancer around at the microscopic level. Not to scare you but I will relay my experience.

In April of 2011 I had a tumor removed from the sigmoid/rectal junction. The tumor was more invasive that it appeared on the scan, had vascular and lymph involvement but the surgeon said he got it all. There was no evidence of spread. This was followed by 6 months of chemo. A few months after chemo ended my CEA was high and I had a PET scan that showed a re-occurrence of the tumor at the original site and suspected spread through my abdomen. Most of my cancer did not appear on scans so the no evidence is not a guarantee that there is no cancer. Would I have done worse without chemo, who knows. I do know with being on and off chemo that my cancer is kept somewhat under control on chemo and grows with no chemo.

[ColOrPan]

Hi Bob,

Sorry about your troubles. I wouldn't worry too much about your wife's attitude right now, the oncologist will set it straight for her. It isn't like you are wasting time because usually they do not do anything until the patient heals from surgery, so average 6 weeks before further action is taken. What you could do in the mean time is make sure that you have all her records on hand and make a couple of copies so that they are ready to be mailed out to cancer centers. Once she realizes that her condition is more serious than she thinks, she might agree to seek a second opinion in a major cancer center. Just get everything ready to go. You might also want to make a couple of phone calls to get names of oncologists and find out what is the process for getting all her info to them. Then after your wife sees the oncologist on the 12th, all you'll have to do is set up the appointments and take the paper work/reports/CDs to the post office if your wife agrees. I would not argue with her too much right now, it is obvious that she wants to believe that she is cured. So that things are clear, you could ask the oncologist: Is my wife cured? If s/he says no, you could then ask him/her what would happen if she didn't do anymore treatment, where will she be in 6 months, one year... without chemo. I'd ask those question so that it is crystal clear to your wife even though you might already know the answer.
It would be good if you could have her tumor genetically analyzed, you could have it sent to FoundationOne. Your wife would have to consent and the oncologist has to order the test. Your wife might not want to do that yet either if she thinks it is not necessary so it might have to wait until the 12th also. Taking action, getting ready might make you feel better, less helpless. In the mean time enjoy some good times with your wife.

I hope these suggestions help.

Suze

[raym]

I forgot to add, unless your wife has something out of the ordinary (which I don't see that she does) chemo treatment is pretty standard at any cancer center. I don't think she needs for one of the higher level places at this point.

[Valorie]

If you look at my signature below, you will see I was staged at 2a. The standard of care is observation. I had the OncotypeDX done on the tumor and was told I had a 9-11% chance of recurrence. I still chose to do the adjuvant chemo (Xeloda). I wanted to make sure if there was any little extra cancer buggers running around, the adjuvant chemo could seek and destroy before they found a home. There have been some side effects but nothing I can't handle to give me that extra 3-5% insurance against recurrence.

Everyone deals with this cancer thing in different ways. Be patient with her. She's probably really scared and unsure right now. I just happen to be a bull by the horns person. My husband was the one that was scared and unsure and needed the patience from me. As I said, we all deal with it differently. Hope this helps in some way.

Valorie

[justin case]

I see you've spent every waking hour searching and reading. That will scare the shit out of you won't it. Settle down my friend, the internet will lead to a heart attack. You're in a pretty good place here, and many of us with cancer, have done the same as you. Avoid the internet, as there are too many generalizations, statistics and other misnomers, which can affect even the most rational of minds. As your wife gets through more of her journey, we will be here to help. Right now, listen to her doctors, as they know more about her circumstances, than you might give them credit for. My oncologist's nurse eased me through the chemo fright, and it is nothing like you have seen in the movies.
Regards,
Michael

[carmelkath]

I think its wonderful that you care so much. Don't believe everything that you read on the Internet. The oncologist will give you the straight stuff.
Maybe because you've taken charge, your wife feels most comfortable expressing her anger. We women can be pretty stubborn, but its rare that we are determined to go against good advice. Take good care of yourself and ask your wife to join us in this forum. She won't regret it. Kathy

[Bob S]

Thank you all for your advise and support. I decided to lay off the internet for researching because the more I read the more negative and doomed the future looked ,it was making me more upset and that I'm sure Patty can pick up on... after reading posts here and your responses to me I have a new outlook on this. I know she will beat this... WE will!!! When we find out more I will keep this up to date... Thank you all again...

[Julie YW]

You are a wonderful husband and your wife is so lucky to have you. If I were you, I would be so aggravated too. When I get frustrated with my husband (about other issues not related to cancer), I call in reinforcements -- his closest friends, his family, etc. in this case, the onc should help you but maybe there's someone else who has sway over her you could enlist to help and go to the dr appointment with. One thing is that when I was starting chemo after surgery, I was told the sooner the better, with 4 weeks post being the soonest. I scheduled my first and second opinions more than a week before the chemo was to start. If you're going to go to Sloan for a second opinion, you should really set up the appt now. Good luck!

[Bob S]

Thank you Julie, I do have an uphill battle with her... I am going to try and see if she will let my sister come to the Onco, she is a 20 year BC survivor who after a radical didn't take cemo at first, and mastecised (sp) to her bone...her attitude changed then about cemo... My immediate challenge is to get her to eat more than a bite or 2 and say she is full... Just have to keep on trying... 8 days till the onco.

[michelle c]

Please do not be too hard on your wife. It is one thing to care but try and be sensitive to her, she is probably very scared and the thought of chemo can be terrifying.

Please do not push her to eat. I had trouble eating after surgery - a couple of bites and I was full. This was unusual for me as I normally had a big appetite. It will get better for her as it did for me. In the meantime, it is best to eat small amounts regularly. Thankfully, my husband did not say that I had to eat more. He was understanding and supportive. Just wait now until you see the onc. He will advise what is best. Googling the Internet for answers is not a good idea.

All the best to your wife....

[Bob S]

Well everyone, we went to the onc today, looks like the next couple weeks are going to busy and i'm afraid hard. Thursday morning were going to the surgeon for the port to be put in, Thursday afternoon the onc's office is doing a Pet Scan and I'm scared and apprehensive of it. I have been trying to not show this to Patty... just smiling and trying to keep her spirits up, they were pretty low when she learned about the chemo, actually very low. Starting the 26th he wants to do Folfox one day, pump for 48 hrs every 2 weeks for 6 months as long as the Pet comes back good, if not then everything changes. If Pet is good and Chemo its 70% no recurrence.

[bldblu_2]

Swinging chickens and sending good vibes that the PET goes well and things can proceed as planned. Keep us posted.

[michelle c]

I've never had a PET scan only CT scans. All the best to your wife for the upcoming 6 months of chemo. It will be difficult but she will get through it. One thing I know is that it is good to do "normal" things through chemo, especially during off chemo weeks. Just simple things - I didn't always feel like it beforehand but felt better for it mentally afterwards - things such as visiting friends, going out for coffee etc.

Unfortunately, I did not find this wonderful forum until after my treatment finished - I wished that I had found it sooner.