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Stage 4 - mets to distant lymph nodes only - 8 month Death Sentence?!

Ciaran
Posts: 8
Joined: Jan 2011

Hey guys,

I'm here for my partner.

I'm very confused at the moment and just need some people's insight.

My partner was diagnosed with stage 4 stomach cancer roughly 3 weeks ago. In that time we have just received bad news after bad news.

His surgical oncologist told us that he had about 6 months to live without chemo and between 6-24 months with chemo. The surgeon said due to his general youth (60) and good health, that he was a prime candidate for surgery but that because of the lymph node involvement they couldn't do anything. He did however say that if he responded well to chemo, then they would assess possible surgery then, but that was a slim chance.

3 days later my partner went to the clinical oncologist. This oncologist agreed that the cancer had only spread to distant lymph nodes but also said that their is no chance of chemo doing anything other than alleviate symptoms and that my partner has about 8 months tops even with treatment.

I'm completely lost at the moment. My partner went to his GP to ask if he should get a second opinion, but the GP told him that their is no point as the surgical oncologist still hasn't ruled out surgery.

I wouldn't mind so much, but I'm not convinced that this oncologist will give my partner anything other than palliative chemo.

The treatment regime they have him on is only for 4 hours every 3 weeks. This seems like a very laid back approach to me! Surely it should be longer than that if they are trying to get rid of the cancer?!

Both my partner and I are confused as to if this is palliative care or not and if their is any difference in chemo treatment if it is?!

My partner is now being stubborn and will not go to another specialist as his GP has told him a second opinion is pointless.

I'm so confused!! Everything I have read tells me that at this early stage of stage 4, that Ed (my partner) still has a fighting chance. A slim one, true, but one that's still there.

The surgical oncologist still has hope also. So is this clinical oncologist just fobbing us off with half arsed treatment or is he really treating him???

Any help anyone can offer, on any aspect of this would be appreciated as I'm going out of my mind with worry.

Regards

C

neverquit
Posts: 221
Joined: Oct 2010

Get to a cancer hospital or Oncologist that is a leader in dealing with stomach cancer NOW!!!! Do not waste any more time, as this tends to be an aggressive cancer where time is of the essence. I know because I just lost my husband 1/23/11 and he was 54 and in good health and did have an aggressive Oncologist who thought he could win the battle.

Ciaran
Posts: 8
Joined: Jan 2011

I'm so sorry to hear that sweetheart. I have read your posts before and you always gave me such hope. Your strength and willingness to go that extra mile for the man you love, has inspired me so much.

I'm so terribly terribly sorry.

Their is simply nothing I can say to make you feel any better. My heart goes out to you and I wish you strength through this impossible time.

As for my partner, he's being muley! Very very muley. In fact he could teach mules lessons on being stubborn!

Because his GP has told him a second opinion is pointless, he simply wont listen to me anymore. Keeps telling me that I'm not a doctor and they are.

I have got the names of several specialists in the UK. 3 of which are amazingly well respected in their fields and at the forefront of this battle. However he simply won't listen to me.

Completely lost now. He's on morphine for his pain at the moment and today I caught him having a beer. I wanted to shout at him, as drinking while on morphine is incredibly dangerous as they both effect the CNS. I didn't even have the heart to do anything more than tell him he shouldn't be doing it.

I've not given up on him, but it seems that I'm not just fighting his cancer, I'm fighting him as well.

Have no clue how to motivate him. I'm just a bit lost at the moment.

neverquit
Posts: 221
Joined: Oct 2010

Wish I could come up with the words that you could use that would make your partner go for that second opinion. When my husband was first diagnosed, the first medical Oncologist that Mike went to told us that there was 0% chance for Mike to extend his life beyond 2 to 4 months. We were devastated to say the least and Mike was about to lose all hope. Then, I showed him some of the postings of the success stories from this site. Also, Mike's surgical Oncologist called the house and got us back into his office. He told Mike not to listen to the medical Oncologist and apologized for what that guy said. He told my husband that there is ALWAYS hope, that Drs. are not Gods and to go to the new Oncologist that he was sending him to, along with a visit to Sloan Kettering. Both the new Oncologist and the Sloan Oncologists told Mike there was hope for a longer time with a good quality of life (and both would use the same protocols of treatment). So Mike took the shot and never looked back.

Is there someone else in the medical community that would give your partner that glimmer of hope that is needed?

have2believe
Posts: 135
Joined: Dec 2010

Neverquit,
I'm so sorry to hear about the loss of your husband. I am at a loss for words...but I hope you are surrounded by the support of loved ones to help you through this difficult time.

You have my deepest condolences.

- Lana

neverquit
Posts: 221
Joined: Oct 2010

Thanks Lana. Mike and I really thought he would beat this beast. Thankfully, I do have many close family members and friends that are helping me through this and don't know how I would do so without them. I continue to pray for great results for your Mom. Keep fighting.
Dina

Eric Grush
Posts: 10
Joined: Jan 2011

Ciaran -- I was in the exact same position 3 months ago, but things have taken a turn for the better. There is hope.

I was diagnosed with stage 4 stomach cancer, which had spread to distant lymph nodes and my liver. The surgeon and medical oncologist both said there was very little chance for a cure or surgery; that I likely had 6-12 months to go. They put me on chemo every 3 weeks. This isn't a weak dosage -- the oncologist says any more would be too toxic; it is powerful stuff.

After 3 rounds (9 weeks), the large tumor in my stomach has disappeared, and the CT report lists the lymph nodes as "resolved" too. The liver tumor is about half the size. My medical oncologist, who is highly respected, is starting to talk about the possibility of referring me to a surgeon if things keep up like this (still lots of "ifs").

I understand that my results are somewhat unusual; good results like this don't always happen, and sometimes it takes more rounds. But I've heard of others who were stage IV who have had surgery after rounds of chemo, or are going strong on chemo years later. This is a serious illness, but we all need to fight it with everything we've got.

Don't give up!

have2believe
Posts: 135
Joined: Dec 2010

May I ask where specifically in the lymph node did it spread?

In November 2009, my mom was diagnosed w/ stage 4 stomach ca. She was symptomless, just a slight tightening of the waist. She told the GP who thought it was something to do with the lungs not realizing that the discomfort was from the stomach and the xray of the lungs came clean. Then she had a lymph node by her neck that swelled up...biopsed...endoscopy...you know the story. Completely new to this, we didn't even know the stage until we met with the surgeon. He said that once it's in the lymph nodes, surgery is usually not an option. While he was a very caring man, he was honest and said w/o chemo, maybe 3 months, with chemo up to 5 years...

Even to this day, she does not have many symptoms, only slight side effects from the chemo. Sometimes if her head hurts, she don't know if it's just the headache or if it's the c. After several cycles, the tumor by the neck disappeared, but it was still in the stomach. However, the dr. recommended to get do the wait and watch approach and from May to the end of November, she was off chemo and did scans every 3 months. In Dec, there was reoccurred in the abdomen, so she is now doing a second line of treatment. We will not know if it's working until a few weeks when she gets scanned for the first time. I hope w/ all my heart that the drugs are effective.

Well, it's now Feb 2011 and my mom's a trooper. Everyone reacts differently from chemo and they have great meds to take care of the usual symptoms. I think it's definitely worth a try. I know someone who was on 2 types of chemo consecutively and it spread to the lungs and nodes and now she is cancer free. She went to sloan to consult and they said that they would have to wait atleast 1 full year before considering surgery, but at the same time, maybe surgery won't be necessary since they got rid of it all.

Please get a second opinion if you can because if anything, you can get a different perspective. We've gone to sloan, u penn, cinj, and two drs w/ their own practice. And I won't hesitate to see another one, or look at clinical trials.

I think that since this cancer is not that common in the US, there aren't that many success stories, but they do exist, and I cling onto that hope that she will be able to live a very long life.

Eric, have you heard of Dr. Block in Chicago? He's known for integrative oncology and I'm thinking about taking my mom for a nutrition consult. I was wondering if you happen to go to him.

My best wishes to everyone on this board.

Ciaran
Posts: 8
Joined: Jan 2011

Thank you for your support guys, it does mean alot to me.

My partner is taking the ostrich approach to danger. Putting his head in the sand and hoping it goes away. Actually I'm being harsh. He's terrified and in pain, he doesn't want to think about it and even though I'm heavily invested, I'm not the one going through it. I can't truly understand what it's like to have my own body turn against me and know I'm fighting the odds.

He doesn't want to read about it. He doesn't want to know what's happening. I've been trying to get him here since we first found out and over to cancer campus. So he can see others who have beat the odds or at least read about the options that are being developed. He simply wants to put trust in his doctors and let them deal with it. I can understand what he's doing, as it must be so much to take in, however he needs to be in control of his own treatment. To understand what's happening at every step and make informed choices. I've tried debate, I've tried coaxing, I've tried shouting, I've even tried showing him pictures of his grand kids just to make him realize what he is fighting for. At the moment he just closes down each time, calls me a pest and walks away. I'm hoping that if I'm just there for him, eventually he will open up again. I'm not giving up. I spend about 6 hours a day researching stomach cancer and the studies that they are doing. I've been on the phone to hospitals around the world, inquiring about their trials and I'm going to continue with this, with the hopes that when he eventually wants to listen, I will have all the info their.

His refusal to do EVERYTHING he can do, is just causing me to get angry at him, when really I'm angry at the cancer.

Sorry about the venting their, I'm normally very forthright with people and recently I've just bottled everything up inside, as I don't want to push him to the point where he pulls away.

As for our situation. Apparently no other organ is affected. He has 3 distant lymph nodes affected, one near the left collar bone at the nape of the neck(which is very badly affected), one near the right collar bone and I'm unsure where the third is, I think it's near his shoulder blade.

The stomach tumor is taking up about half of his stomach but he still has no problem eating and his appetite is the same and that's saying something. As I'm a BIG eater (I think it comes from being Irish) and when I cook food, it's a proper plate of food you get and he still eats all of it without issue.

His primary symptom was slight trouble swallowing. This went on for 6 months with me pestering him to go see about it and eventually a bit of potato got stuck and panicked the life out of him. so he went and we found the cancer via endoscopy. Their was no pain initially, however shortly after diagnosis, more symptoms onset quite quickly. I've asked the docs and they say that's normal, something to do with the brain no longer being able to ignore the symptoms anymore and the focus upon them making the physical symptoms worse. (kinda like the reverse of a placebo) He has agonizing pain in his back, caused by deferred pain from the lymph node involvement, which is resulting in him not sleeping well and having to be on Morphine.

We live in Scotland (in the UK), so we don't have the same wealth of hospitals to choose form as you do in America. We also have slightly different drug regimes over here. Saying that however we still have some world standard hospitals, which are all part of the NHS. the Royal Marsden (London) and Christies (Manchester), spring to mind. However they are quite a distance from Bonny Scotland ad my partner doesn't want to be separated from his adult children (which is understandable). In Scotland we have more limited resources but we still have a couple of people who are amazing, the primary person being Jeff Evans, who is a clinical oncologist and specialist in stomach cancer who has an extremely good reputation. IT is this man that I want my partner to go see, but he simply refuses. (which is very very annoying!)

Well truth be told I want him to go to the Royal Marsden, but a 500 mile trip for treatment is a very long journey for someone in pain, so I can understand his refusal.

I just want him to be doing everything he can, as 8 months is simply not enough time!!!

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