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From a daughter of a Stomach Cancer's patient in stage IIIB(T3N2Mo)

hngan16
Posts: 3
Joined: Oct 2008

Dear all,
If you are survivors and now cancer free, congrats! I really admire your experience. If you or your loved ones are living w cancer, I wish u all the best!
My mom was diagnosed w stomach cancer a month ago. 2 weeks ago, the doctor was able to operate a subtotal removal of her stomach, spleen, and 16 lymph nodes. Following is her operative report:
----------------------
DIAGNOSIS
(A) Stomach and spleen, subtotal gastrectomy and
splenectomy:
- Poorly differentiated signet ring
adenocarcinoma, with invasion into the serosal
surface (pT3);
- 14 out of 16 lymph nodes are involved by tumour
(pN2) (14/16);
- Tumour involves proximal margin and is 3mm from
distal margin;
- Perineural invasion and lymphovascular invasion
seen;
- Spleen is uninvolved by tumour.

(B) "Oesophageal end", excision biopsy:
- Signet ring adenocarcinoma.

(C) "Distal end", excision biopsy :} Negative
for malignancy.
(D) "Afferent loop", excision biopsy :}
---------------------

She's having 2 more weeks to get ready for chemo or radiation treatment. Anyone has been through w this type of cancer, any advices on medical treatment or expected side effects, any experiences, any things that you think my mom should need to know, please share! You know your help means a lot to me and my family. Thank you very much!
N.T

Tomissimo
Posts: 37
Joined: Sep 2008

I am one year out from my Stage 3a Stomach Cancer. They performed a total gastrectomy and removed the bottom third of my esophagus. I don't remember all the terminology but I only had 2 or 3 Lymph nodes infected. My treatments were Chemo/Rad in July, Surgery in Sept, and second round of Chemo/Rad in early Nov.

One thing I tell people who've had stomach surgery, either for cancer or gastric bypass, starting to eat again is going to be the most depressing point of the recovery. It was more emotionally grueling to look forward to eating and then having all the pains and issues that goes along with it, then recovering from the surgery itself. And I can say that after my epidural got removed when I was stepped down, which I can honestly say I felt a level 10 pain scale.

I say this because I would like to help your mother manage her expectations. Starting to eat again with the inevitable dumping syndrome is great blow, when it's all you look forward to for a couple of months. The first few months of it will be rough, and she'll constantly keep asking herself if it was worth it. I know I did, and for us it is a matter of life and death.

In the long run the answer is yes. I still have problems one year out, but they are fairly minor and infrequent. The body changes in foods of what it likes and dislikes, it stinks not liking sweets or even fast food anymore.

One of the hardest things as a Stomach Cancer survivor to deal with is having a therapy group or at least someone to ask about issues that we encounter. I only started recently contributing here and I know there have been several others that do contribute regularly and very supportive and helpful. I wasn't that familiar with this site at the time, well that and I didn't have the energy to look for a site like this, but I see how it can be helpful and is for me at this time. Even if I don't add input or ask questions there are other people going through what we go through. And even knowing that we are not alone helps in dealing with the issue.

If I can ever be of any assistance or support I will always try to do the best I can. I tend to be a be blunt and not sugar coat things, but I feel be ready what to expect, but I certainly do wish the best for anyone who has cancer as I pray for all sufferers of cancer.

-- Tom

hngan16
Posts: 3
Joined: Oct 2008

Thank you for your reply! I wish you all the best!

amandastam
Posts: 4
Joined: Dec 2008

may i ask HOW the doctors diagnosed you ? i mean, with what method did they use to diagnose you? what symtoms did you have that made you go to the doctor? i can NOT get my doctor to take me seriously or give me any kind of catscan or anything else. i have symptoms, like, bloating after meals, feeling like throwing up, tired all the time, stomach discomfort......etc... but the doctor just says i have heartburn w/o running any test!

jennyjen
Posts: 6
Joined: Oct 2008

Hi,

I am an advanced breast cancer survivor and am still getting monthly Faslodex treatment when two weeks ago, I was diagnosed with a new primary cancer in the stomach. In meeting with the surgeon, I found out that it is located near the esophagus and that this surgery may involve partial, if not, complete removal of the stomach. A 2nd opinion surgeon also told me that because of the location of the tumor, a Thoracic surgeon may be the most qualified to perform the surgery since a portion of the esophagus may also have to be removed.

I was also informed that another approach might be to do chemo to shrink the tumor before surgery but I'm afraid that this method might compromise healing because of my body's weakened state. Is anyone out there that has gone through the same thing? Can you shed some light on this?

Although a CT scan of the chest and abdomen did not show any signs of metastases, I'm wondering if a laparoscopy might help confirm this, or is surgery the absolute route to know for sure? The biopsy is being looked at again just to make sure that this is not a metastases from the breast, because if it is, then there's no point in doing the surgery.

So my questions are:
1. Did you have to stop treatment for advanced breast cancer before surgery?
2. What type of surgery was performed and where did they do the incision(s)?
3. What can I expect right after surgery, while in recovery?
4. What is the prognosis or quality of life after surgery?
5. Will surgery prolong life?

Thanks for any information you can provide.

Tomissimo
Posts: 37
Joined: Sep 2008

Jennyjen:

I'll relate my experiences to your specific questions, of course everyone is different. I'll preface this with two case studies essentially. One being myself (age 31 at the time) and another man who went through the same procedure I did, but he was 68.

I underwent a week of Chemo/Rad with a second week of Radiation to shrink the tumor down. This was done because I was IIIa (stated in above post) and while my PET and CT scans came back negative they wanted to be sure it was not growing elsewhere.

I had a Thoracic surgeon perform my surgery, as it was a complete gastrectomy and they removed the bottom third of my esophagus.

So to try and answer your questions:

1) n/a -- Sorry I can't help here

2) I had a Thoracic surgeon perform my surgery, as it was a complete gastrectomy and they removed the bottom third of my esophagus. The major incision stretched from my left shoulder blade to my navel. I also has 2 major draining tubes, 3 balloon draining tubes, and a J-style feeding tube. After 6 weeks I had a follow up endoscopy to verify the healing before I was able to start the eating process again.

3) Where I had the surgery performed, they want you up and moving fairly quickly. I think 4 days after surgery they want you to try and get up and walking. Obviously quite minimally at first. You'll be worn down and exhausted as with any major surgery. They told me the average hospital stay for my procedure was 10 to 14 days, but there are certain things you need to be able to do before they'll let you go. I was released after 12 days, and I believe the other person I knew was released after 14.

Optimism is pretty good at this point, because you'll notice very distinct accomplishments and degrees of improvement. You'll be able to get around better on your own and each week you can look back and see how far you came. Of course, as with anyone undergoing this or any type of stomach surgery I always caution is to not get too optimistic about eating again. In the year since I underwent treatments (Chemo/Rad in July, Surgery in Sep, Chemo/Rad in Nov of 07) that period of time was the worst emotionally and hard physically. Knowing it was a life or death decision I still questioned myself about doing it. Of course I have a wonderful wife and less then 1 yr old daughter at the time to make me weather the storm. Keep in mind, that you are going to have to teach your body how to digest all over again. heck I still am at this point though it's fairly stable now.

4) You'll want your doctor's opinion obviously, but some stats I had found (don't remember specific sources, but I checked Cancer.Org, and Cancer.gov as well as links to the released government statics for 2007 and 2008) Various stats I recall were a median recurrence of 7 months, and median life expectancy of 27 months. Of course those were covering all types of stomach cancer and not age bracketed or any other organization, so take it for what it's worth.

As for quality of life? I would have to say it's improved in the long run. I don't have pain everytime I swallow, though I do have to take baby sized bites and chew thorougly. And while weak and significantly thinner I am living my life in a normal manner.

5) Obviously the state of cancer, and the other issues you are dealing with will contribute to this. As for the two cases I mentioned earlier. I am of course still going 13 months after surgery, unfortunately and sadly, the friend I made through this passed away just before the year anniversary for our surgeries (we were only a few days apart). Between us there was a big age difference, but also he had many more lymph nodes infected then I did (2 vs 13).

We can only hope that your doctor's are steering you in the correct direction for you as they will have a better understanding of what the situation is then anyone else, except for yourself.

jennyjen
Posts: 6
Joined: Oct 2008

Tom, first I want to say that you are a very brave person for getting through the surgery and the healing. I've been reading your posts and I applaud you for your courage and determination. Certainly, you've come a long way with positive results.

I was particularly interested in what you had to say about the incision. The surgeons I've talked with gave me a rough idea but you painted the picture perfectly and that was exactly what I needed. I have yet to meet the Thoracic surgeon and will clearly address this issue. As a woman, I need to know how I would look post-surgery -- although I only had a lumpectomy on the right breast, I'm afraid that I would look like a chopping board after all is said and done. It's part vanity but I know myself, and this is what keeps me partly sane.

We are just hoping for the re-evaluation of the biopsy samples to show that it is a metastasis from the breast (the initial report results showed that it is more consistent with a primary gastric tumor than with a metastasis from a breast primary) so that I can get chemo instead. I will also explore accupuncture and other eastern medicine methods. Thanks again, Tom, and live strong.

Labguy's picture
Labguy
Posts: 5
Joined: Jun 2008

Jen,

My mass was at the gastric/esophageal junction. I had an Iver-Lewis transhiatal gastrectomy/esophagectomy that required two incisions.

My abdominal incision looks like a Mercedes symbol, starting a little above the base of the sternum, straight down for a few inches and extending right and left just below the ribcage for about six inches on both sides.

The thoracotomy incision is about 8 inches long, between the fifth and sixth ribs on my right side ending to just below the bottom of the right shoulderblade.

I have no problem with my scars and feel it is very classy to have a Mercedes symbol on my stomach (just kidding). My six year old grandaughter thinks they are fascinating.

Another Tom

amandastam
Posts: 4
Joined: Dec 2008

may i ask HOW the doctors diagnosed you ? i mean, with what method did they use to diagnose you? what symtoms did you have that made you go to the doctor? i can NOT get my doctor to take me seriously or give me any kind of catscan or anything else. i have symptoms, like, bloating after meals, feeling like throwing up, tired all the time, stomach discomfort......etc... but the doctor just says i have heartburn w/o running any test!

hngan16
Posts: 3
Joined: Oct 2008

It has been nearly one month since my mom's surgery. She's now having infection and have to take along a drainage tube. There are these red and green (more red) fluid coming out in the drainage tube. She's adviced to eat as much as she can. If you have any experience on this, please give my mom some advices. She's in very bad mood right now and it makes me and family really worried..

Tomissimo
Posts: 37
Joined: Sep 2008

Unfortunately I don't think I have any real advice to help you out. I don't think I actually had a bad infection at my feeding tube (no fever), though I did have leakage frequently. However, the bad mood, from my experience, probably is dealing with the constant pain of surgery, lack of sleep due to pain and other issues, and not being able to live the life you want to. The treatment is a life altering experience, and it was hard for me to (and still trying to) adjust to it.

For a laugh, I remember my feeding tube pole was too white to fit through the doorway to the bathroom in my house. I had to have help maneuvering it in, or simply kicking it through to get in. Very aggravating at the time but I laugh at myself now.

I hope someone can give you a meaningful response, but I know when I asked questions it was at least good to hear a response and let it be known that I wasn't being ignored. I hope your mother does get better and I'm sure other survivors will tell you: It will get better, but it will take a long time.

amandastam
Posts: 4
Joined: Dec 2008

may i ask HOW the doctors diagnosed you ? i mean, with what method did they use to diagnose you? what symtoms did you have that made you go to the doctor? i can NOT get my doctor to take me seriously or give me any kind of catscan or anything else. i have symptoms, like, bloating after meals, feeling like throwing up, tired all the time, stomach discomfort......etc... but the doctor just says i have heartburn w/o running any test!

Tomissimo
Posts: 37
Joined: Sep 2008

Well the only symptom I was aware of personally was the fact that I had intense pain everytime I swallowed something. That was because my tumor was at the junction of the esophagus/stomach. And even then they would not commit to calling it cancer until it was biopsied.

Even if you have a tumor, that does not guarantee it is cancerous. I had an upper GI to discover the tumor, an Endoscopy to perform a Biopsy and a CAT/PET scan again to check for further growth. Though the PET scan came later.

I tried Prilosec OTC for a week and still had the pain that's what made me go to the Dr. They didn't think it was cancer at first, but still ran the tests thankfully. The good news is that this isn't an extremely common cancer which we hope you don't have, but if you are concerned and they won't run tests always try a second opinion.

craig1's picture
craig1
Posts: 4
Joined: Nov 2007

My wife had upper 2/3 gastrectomy and distal esophogectomy she had her surgery 10/07, and she is doing great the first year is not pretty 60 lbs of weight loss nausea cramping but it does get better. My best friend was our oncologist which was a great comfort. Life does get better. This life is but a vapor and this sure teaches you that. Tell your mom she will look
back on this a year from now and it will be simply a memory that brought her closer to family and to God
Would love to commmunicate with you and share are experience with you

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