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My daughter was just diagnosed with stomach cancer this friday/any advise?

suzyqless
Posts: 6
Joined: Jan 2009

Hi,
My daughter was just diagnosed with stomach cancer 2 days ago. They found it while doing a scope. She is only 35 years old. She has been having a lot of heartburn, a little nausea and some diarrhea. The first Dr. she went to told her she had chronic heartburn and she would have it the rest of her life. Thank God she didnt accept that answer and went to another Dr. She was so smart to listen to her body as she doesnt usually go to Dr.s So for her to push was good. The next one she went to ordered an ultra sound and another test, not sure of the exact name, but Hia something. Basically they were both to check out the gall bladder. They came back with no problems. That Dr. referred her to a specialist. GI Dr. He oredered the scope. The Dr. went in after the test and unfortunately I was not there but my other daughter was with her. They were told she had a tumor or mass in her stomach and that it was cancer. They did a biopsy. They scheduled an appointment for a surgeon for this coming wed and an oncologist for this thursday. We dont know anything. We are so scared and uninformed. It seems as though the more I read online the more confused we get. I know it is a waiting game. How horrible. I spent the whole weekend with my daughter and am home now. I feel like I need to be with her. I know it is silly, I only live 15 minutes away from her. Can anybody give me any hints or clues from personal experience they can share rather than informal info from the net.

Wow, that felt really good to get that all out.

suzjazz
Posts: 17
Joined: Jan 2009

Hi suzy,
I am keeping your daughter in my prayers.
My BF (also young for stomach cancer) was just diagnosed at 45.
Since they are younger, and don't have other serious diseases, they will be stronger and better able to fight.
We don't know the stage yet (he had MRI this morning and we are waiting for results to see if it has spread to liver--praying not) If the tumor is contained, it can be removed (along with the stomach also, unfortunately) and there is the possibility of a cure.

We are located in Boston and he is being treated at Dana Farber (famous cancer center here) We had a consult with a very highly regarded oncologist whom I really like. We are supposed to see a surgeon this week.

I don't know if you said where you live. I have heard good things about Anderson in Texas, some not so good about Sloan-Kettering even tho it is prestigious. I am also a cancer survivor and had a great treatment experience at Dana Farber. People come there from all over. The staff is so incredibly kind and the doctors are great.

It's hard to give advice except to say this: what works for BF and me is informing ourselves as much as possible about the disease (via internet and ACS) and being as proactive as possible about care. Get your daughter to see the best specialist you can find and you will have some peace of mind.
Knowing she is receiving the best possible care is worth something.

God bless you and best possible outcome.

suzyqless
Posts: 6
Joined: Jan 2009

thank you for your prayers and sharing. We are kind of confused as to how you know where to go, my daughter was referred to a supposedly very prominent surgeon. and an oncologist whom we have no references to at all. how do you know where do i go is this one good. why is it better to to to a big place far from home. it is all very confusing. my daughter had a ct, and a pet scan today, also a chest xray and blood work. we will get the results and staging information mon when we go back to meet with the surgeon, she is scheduled for surgery tues at this point unless something different changes that. they want to remove regardless because she would be able to at least eat then.

ScissorsMacGill...
Posts: 8
Joined: Jan 2009

1. Inform Yourself About the Disease and About Treatment

The survey I found most helpful was this one at the National Cancer Institute:

http://www.cancer.gov/cancertopics/pdq/treatment/gastric/Patient

One thing to be aware of: from reading the document and talking to my oncologist, I learned that staging (evaluating the state) of the disease with stomach cancer is quite complicated. Often full blown staging does not happen until surgery.

Some things to be aware of:
—where is the tumor located in the stomach?
—how large is the tumor?
—has the tumor penetrated the stomach wall? (this may require a CT scan)
—are any lymph nodes involved (again, this may require a CT scan)
—is there any spread to other organs? (this may require a CT, or an MRI, or a PET scan)

Regarding treatment, what I've found is this:
—Part or all of the stomach is removed. If all the stomach is removed, a new stomach-like cavity is formed from the end of the intestines and the bottom of the esophagus
—Chemotherapy follows the surgery. Sometimes radiation is added.
—Some places are treating stomach cancer with pre-surgery chemo and radiation in addition to the usual post-surgery chemo and radiation.

Something I've discovered from reading people's experiences here is that learning to eat again after the surgery is a damn difficult part of the process.

2. Get the best care you can.

You may ask, "How do I know what's best?" Here are two surveys of Cancer Centers I posted elsewhere:

http://www.cancerlinksusa.com/centers.htm

http://cancer.about.com/od/treatmentoptions/tp/tophospitals.htm

There is also the list from the National Cancer Institute of NCI-designated cancer centers:

https://cissecure.nci.nih.gov/factsheet/FactsheetSearch.aspx?FSType=1.2

Note that some of the places in the National Cancer Institute list do research only. But of these places that take patients, I figure you can be certain that they are more up-to-date and focused on cancer care.

With a condition on the decline in the US like stomach cancer, I think it's best to find someone who has experience treating it. I got the impression from the GI who diagnosed me that he hadn't seen a case in a while, and was quite shocked to see it in someone my age. My oncologist, on the other hand, sees quite a few cases and, while its a very serious disease, was not shocked or disturbed when speaking to me.

3. Make sure your daughter has adequate pain relief in the meantime

Before I was diagnosed when I thought I had reflux, I was taking Prilosec and other acid-inhibiting drugs. They didn't help much. My diagnosing doctor (the GI) gave me a script for Tramodol, which is much more effective. If keeping a positive attitude is key to fighting the disease, minimizing or eliminating pain where possible helps A LOT.

The same goes for anxiety. If it's unbearable for her, she should get some anti-anxiety meds. Dread doesn't help maintain a positive attitude either.

4. Support your daughter as she needs it

If your daughter says that just having you around helps lift her mood, then by all means, hang around. If, on the other hand, she needs some space, give her that. If she wants hugs, give her those. If she wants to make gruesome jokes, laugh at them.

5. Statistics are not destiny

An excellent essay on this is Stephen Jay Gould's "The Median Isn't the Message" available on line at

http://www.cancerguide.org/median_not_msg.html

In a nutshell, statistics are measures of general tendencies given a large number of cases. Your daughter's case is may have many factors that separate it from the "average" stomach cancer case—that's she's young and female already makes her atypical.

I wish I could say more, but I'm new to this myself. I'm count myself very lucky in that I have a caring sig.other (suzjazz) and many friends who are providing emotional support. Know that you and your daughter are in my thoughts, and I'd be happy to answer any private messages you send to me.

suzyqless
Posts: 6
Joined: Jan 2009

I really appreciate you taking the time to share your finding and experiences, for the time being my daughter is strangely calm, it has me very worried, i dont know if it is denial or reality. we are playing this game of do this test and then wait,do this test and wait again. we got a bad forcast from the surgeon and a much better one from the oncologist. she had ct and pet scan today and we will find out mon the staging. we do know it is grade 3.

Tomissimo
Posts: 37
Joined: Sep 2008

I find it ironic that this cancer is usually common in the 50 to 60+ age group for men. Yet there seems to be a number of younger (20 and 30ish) people being diagnosed. I was 31 when I was diagnosed myself.

As Scissors mentioned the care really depends not only on the type of cancer, but for us the location of the cancer within the stomach as well. Mine was at the junction of esophagus and stomach, so I saw a Thoracic surgeon instead of a gastrointestinal one. I also went to the Cleveland Clinic where they are world renowned for their Heart Center. Of course the heart is located in the thoracic region of the body so I was lucky to be in their care. Scott Hamilton (the ice skater) was Treated at the Clinic and he has the Scott Hamilton cares foundation run through their Taussig Cancer center.

My experience was it was miserable until they actually decided on a course of treatment, because it simply is "We may do this" or "We may do that", but until they know what they are doing with they really can't formulate a treatment plan. It's hard on our end, because we want to know and start moving forward with treatment.

Not sure if anyone else dealt with this either, but you can find all kinds of statistics on the web. Scissor's pointed a few out. I tend to not give it myself because what I found was fairly depressing, but I know the desire of wanting to know too. One thing is that my oncologists never really discussed statistics with me. And I can see their point of view. 1) The outlook is grim compared to many cancers, but not as bad as Pancreatic. Which has the worst outlook because symptoms are usually not observable until it has spread to other organs causing symptoms. 2) Stomach cancer is actually a pretty broad range of symptoms and treatments again depending on location. Topic http://csn.cancer.org/node/162792 lists a couple of different surgery types. I listed my basic surgery there as did Labguy who had a different procedure approach.

Also as a mother you are going to have a hard time with it as well. My wife and mother had a harder emotional time then I did I think through this whole scenario. No one wants to see anything bad happen to their child. I feel that way with my 2 yr old daughter.

ScissorsMacGill...
Posts: 8
Joined: Jan 2009

I didn't mean to give out stats, even indirectly, but I suppose I did. What I wanted to emphasize is that it's really true that every case is unique, and you shouldn't take a stat as if its a valid prediction.

*IF*—only if—you choose to investigate statistics, always keep in mind they are not destiny, but measures of outcomes over a large number of cases. Then realize that a single stat mixes together results from different groups at different levels of disease, diagnosed at different times, etc.

I mentioned the Gould essay because it's something by a person who in his work as a scientist really understood statistics, and quickly discovered that the general stats for his cancer meant very little for his case. I think his essay is not merely comforting, but inspiring, and I'd like to quote two passages that I find particularly inspiring (my emphasis added):

"But all evolutionary biologists know that variation itself is nature's only irreducible essence. *Variation is the hard reality*, not a set of imperfect measures for a central tendency. *Means and medians are the abstractions.* Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because *I know that variation itself is the reality. I had to place myself amidst the variation.*"

and

"It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die - and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy - and *I find nothing reproachable in those who rage mightily against the dying of the light.*

*The swords of battle are numerous, and none more effective than humor.* My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn't expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain's most famous line of all: the reports of my death are greatly exaggerated."

Here is to us all reigning in a bunch of undisciplined cells who think they can mess with our lives!

Scissors

Tomissimo
Posts: 37
Joined: Sep 2008

I should have edited my message. Wasn't meant to be confrontational or correcting. We are going to want the information and it was valuable that you provided the links to it. As users if we don't want it we don't have to click it. I looked up the information myself obviously and do try to check out the new releases of information. My comment was more that I didn't like what I found. As you stated it's good to know, but don't live by the statistics.

suzyqless
Posts: 6
Joined: Jan 2009

I have been reading all kinds of stuff, to much i think. but yeah, i saw where they say over70, men,and then they say african american, and asian. she is a caucasian 35 year old woman. my wierd thing i am going through now is I want everyone to leave her alone, there are so many people calling her I cant even find out wht is going on after appts. it is so irritating to me, how selfish is that. it sounds so stupid to say. thanks for your input, hopefully i have good news on mon

Tonia11
Posts: 57
Joined: Jan 2009

Hi Suzy, my husband was just diagnosed last week as well . He is 38 years old. I will just echo what the other posters has said. Try to educate yourself on this type of cancer. Don't focus on the statistics but on the types of treatments. MD Anderson has some good information on their site. We are located in Atlanta. He will undergo his chemo at Piedmont Hospital first but his surgery will be performed at Emory University Medical Center. It seems the regimen now at most cancer centers is chemo first to shrink the tumor and then surgery to remove it.

Here is a link from the MD Anderson site that discusses the Advancements in treating Stomach Cancer. It's a audio recording. I found it very informative and encouraging: http://www.patientpower.info/Audio/webcast/MDA080508.mp3

suzyqless
Posts: 6
Joined: Jan 2009

there is so much info you just kind of turn away from it all, her cancer is right at the bottom of the stomach and the beggining of her intestine. we are hoping of course that it is localized and praying for a miracle. she is going to have part of her stomach removed on tues but of course that is only if the test results we get on mon do not change anything\

a.j.
Posts: 2
Joined: Jan 2009

I am sorry to hear about your daughter. I have Paraganglioma Cancer. It is always good to keep looking. The Dr. told me that the tumor that was atached to my liver was not cancer and they didnt want to operate. After 6 months of being so sick i sd if you dont remove it i will do it myself. LOL ! So, they did the operation the next week. I am glad they did because it was cancers. I have had part of my liver removed two times. I am now 35 a mother of 3 and I am going next week to have my round of test done. That is MRI and a MIBG .I thik that it is back and has grown because I am having such bad night sweats. Anyway I just wanted to let you kno wthat you are not crazy for wanting to be by her. After they have decieded on what to do and she come home she will want you there. It may only be to hold her hand or watch tv while she sleeps. I loved when my mom was here. I also had people from church here to cook , clean , and help with the kids. That helped my husband so much. Please email me if you would like to talk.

suzyqless
Posts: 6
Joined: Jan 2009

i hope it is not back. when my daughter first went to the dr about all the heartburn the first dr said it was chronic heartburn and she would have it the rest of her life, thank god she listended to her body and persisted with another dr. i pray we have caught it early enough, my other daughter and i have been going down and cleaning and we and other friends have been taking meals. after we found out last fri we all (very small family)all went to a hotel and spent time together, we are going to do that again this weekend. thanks for your thoughts, I hope you are ok

canuck1
Posts: 8
Joined: Feb 2009

My prayers are with you... I had the same misdiagnosis as your daughter. I have posted a previous reply that you might want to read. If you have any questions please contact me at starasoff@telus.net I am in Canada and the best surgeons available. One of them did the first lung transplant in Canada and is a pioneer in thorasic surgery.

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