CSN Login
Members Online: 11

Stent, Surgery, Tube, or Radiation??

pjlee123
Posts: 14
Joined: Sep 2011

Hello all,

My father in law has stage 4 Adenocarcinoma in the lower esophagus.
He's completed only two sessions of chemo, which he was tolerating well.
He was still eating solids, even sandwiches, until about a week ago. Then he suddenly had trouble even with liquids. Started to lose weight quickly.
Oncologist put off next chemo session by a week.
GI doc placed esophageal stents on Friday. Had to kind of force them in there. Got things opened up to 1 cm in diameter.
They sent him home with 9/10 pain and high blood pressure (170s/110). Only Tylenol pm for pain.
He says pain has been awful all weekend. Still only taking in water, juice, soup broth, some puree.

Any advice out there?? Better pain meds for one.

If things don't improve soon he may need a tube. He's in a clinical trial. I wonder if minimally invasive surgery or radiation would have been better for him, but might have disqualified him from continuing with the trial.

At this point hopefully he recovers from the procedure soon. It's been 2.5 days now.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

For Stage 4 EC, PJ. I'm so sorry! It's my understanding from those posting here that Stage IV care is chemo or chemo/rads or palliative (pain care) only. There have been exceptions to that, according to our mentor, William. But the surgical results were very literally short lived before the EC took over once again.

You are completely right in thinking he needs better pain meds and quickly. It's completely amazing to me that he was released to go home with pain of 9/10 and only Tylenol PM for the pain. No one should have pain with the medicines available today. Please be sure to get in touch with the oncologist as soon as possible to request better med options.

Others more familiar with the options available in Stage 4 care will reply. Sherri, William (if available), Sangora, Rita, Jo-Ann,Eric and Michelle quickly come to mind as those very active atm with information for Stage 4 care.

Our prayers are with your family! Please keep us updated.

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

PJ,
Like Terry, William and the others who will shortly write to you, I am so sorry to hear your father in law is stage IV. Has he had any second or third opinions? Has anyone suggested this yet?

I am 43, stage IVb and terminal with Adenocarcinoma in the lower esophagus. Surgery is not an option. A stint is the LAST things anyone will even put into my body. I have chosen not to even "allow" chemotherapy or other treatments for myself, as they would offer little in the way of any real benefit, by my definition.

There is no surgery to "repair" the esophagus or remove cancer staged at this level, or as William and Terry correctly pointed out, it's not only pointless as the cancer still owns the body at stage IV, but the surgery alone would more than likely rob him of whatever life he has left.

I am very unclear on what the trial is, what the benefit or effect is that is expected from it, and why he had a stint put in without a lot more investigation, but that's water under the bridge at this point. The stint being put in alone usually justifies pain medicine along the lines of Oxycodone or Oxycontin, Dilaudid, Methadone, you get the idea. Someone at THIS stage of throat closure due to cancer/tumor growth closing his esophagus to that degree should have woken up to prescriptions for things most people never even hear the names of for pain.

What cancer center or hospital is he at? I would be on the phone FOR HIM with the oncologist today at 8am, asking to have pain meds sufficient to keep him from being in the kind of unimaginable pain that stage IV causes body-wide, aside from the stint and other issues I will forgo mentioning at this point. He needs an advocate to stand in the gap, as my wife says it, That may be you. Go there. And fast.

As for trials and what he may expect, if he is tolerating the chemotherapy and radiation program they have him on, then great. I just cannot believe he has gotten THIS far into treatment and has no pain medication. Having Stage IV EC is painful in and of itself, whether its bone pain, shoulder blade pain, lower back pain, tumor pain in and around the stomach, I could go on and on. This is what I wake up to daily, and why I reach for my bag of medicines first order, sometimes even before I get to use the bathroom upon waking, if I have slept.

I cannot imagine the life he is living at this moment with Tylenol PM. That is likened to having your leg amputated and being sent home with an aspirin and instructions to walk less for a few days!

Please, get him some pain relief first, then re-post other information and find out about feeding tubes and hydration and a myriad of other things that he should be focused on at this point, much before worries about surgeries and what to do about the stint he already has to contend with. I find it hard to believe a doctor with experience with this disease world work so hard to achieve a 1cm opening and force a stint into a stage IV patient, and not just stop and back out, but I have read many stranger things at this point since joining the board.

Others will chime in and mention what things I am forgetting, but standing in the gap would be my first order of business were I you.

I wish you both all the best and look forward to you posting more information soon, so we might all know more and help better, with more directed advice.

God bless,
Eric

pjlee123
Posts: 14
Joined: Sep 2011

Really appreciate the feedback.

He's stage IV with 3-4 metastatic foci in the liver as well as para-aortic / para-esophageal lymph nodes.

I don't know -- I researched a bit about these esophgeal stents and get mixed reviews. His oncologist and the GI doc both recommended it. Sounds like many patients are sent home with only NSAIDs (see link below). His liver function tests are still normal, so I'm sure he can tolerate Tylenol. But once his pain was bad for > 12 hours or so, I wish they wouldn't have called the MD for a fentanyl patch or something.

Today he says the pain is 80% better. I hope so and I hope he can start eating more than juice and ensure.

I know he has good insurance, but I hope he's getting the care that's best for him, not just the care that reimburses the most.

Anyway, sounds like lots of folks have had bad luck with stents. I hope he had better luck. The GI doc wants to try to dilate it to 2 cm at some point in the future.

Also, he's still getting used to what this diagnosis means for him, and I'm pretty sure he's not ready to think about having a tube placement -- either per mouth / nose or through the abd wall.

Finally -- I know curative surgery isn't an option unless chemo can get him to be down-staged (unlikely), but I have heard that minimally invasive esophageal surgery is an option for palliative / quality of life. Over than his cancer, he has been doing well -- no real heart / lung issues, etc.

Thanks again!

http://www.nature.com/ajg/journal/v102/n12/full/ajg2007524a.html

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

Placement of a Jtube to supplement diet as needed is best done when the patient is still well and not compromised by the disease. Jtubes are placed in the Jejudeum or 2nd small intestine. Placement is there because it is lower than the stomach and the patient is able to retain calories/proteins should the stomach regurgitate. It's placement is also necessary for surgical candidates as the stomach must be dramatically during surgery.

Regarding your statement here "I know curative surgery isn't an option unless chemo can get him to be down-staged (unlikely), but I have heard that minimally invasive esophageal surgery is an option for palliative / quality of life." I haven't heard of this possibility myself. I do know that William in his time here has experienced a couple of Stage 4's that did have surgery. But the outcome was shortlived. I don't know that I would encourage consideration of a surgery if the gain isn't great. It's quite a dramatic surgery and not without its own risks.

Finally, sorry but I have to provide editorial comment. Tylenol isn't pain meds for anyone other than a youngster with a skinned knee! And sometimes not enough for that. Better pain management needs to be an immediate consideration. If the patient opts not to take meds, that's one thing. But to not have them available when needed is another.

Terry

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

PJ,
I have to agree with Terry and William, and most ALL of the other people on this board and at my cancer center-that NO ONE I have ever even heard of is sent home taking NSIADS with cancer!!!

In fact, they are HIGHLY discouraged, as they are blood thinners, as you should know working in the medical field as you state, and as most of us stage IV's (myself included) have BLEEDING METASTATIC tumors, sticking out of or through our esophagus or stomachs (I have both), it is not advisable to ALSO bleed out internally due to taking NSIAD'S or Aspirins. Just not logical to any doctor. I was told not to EVER take them again on day 1, with a STERN warning by both my GI doctor who diagnosed me, and the THREE different oncologists who staged me.

We take the drugs my Oncologist says she prescribes to ALL cancer patients, and Tylenol for a fever and toothaches (she put it to me in those words when I asked her today after reading your post this morning!).

I would HATE to think of your father in law suffering, as I did before getting PROPER pain medication and management, and having my pain under control. Makes one not want to eat or move, much less live for much of anything with this EC cancer.

Just my non-medically trained 2 cents worth.

On the stint issue, I have YET to see a positive experience, except for one person on this board, and it is my understanding that that was for a consciously short period of time, in hospice, near the end and not a long term solution to begin with. Certainly not for living on so to speak.

Sorry if I come of strong. this is a powerful issue as we are all dying of our stage IV cancer and to hear it's treatment, and the accompanying pain, talked about so "lightly" as it came across to me, is hard to hear. It's not personal with you-just so you know, PJ (as I don't know your name).

Best wishes for your father in law and you, and God bless,
Eric

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Steve was the one with a good stent experience. He didn't have it in Hospice, but at home. He was home a month before he left for Hospice House, so he had the stent for a total of about 7 weeks. I wish he had had it a month earlier, as it really helped him eat and enjoy his time he had left. He had refused to consider a feeding tube.
Nevertheless, he was DONE with chemo and so he wasn't going to have a tumor shrinking and allowing the stent to dislodge into the stomach as I've read happened to others. Plus, his gastroenterologist was a seasoned veteran at a top-nothch hospital. It worked beautifully for him, and I so wish it were the same story for everyone...
Jo-Ann

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

My husband Charlie was another one with a good stent experience...in my opinion anyway. He had his for 3 1/2 months before his passing. I believe both his oncologist and GI dr felt he was approaching his end stage and wanted him to get at least some pleasure from being able to eat and not be tube fed. I know it made Charlie's last few months better for him. He also had an excellent GI dr, who had experience with stents and told us the stents have been improved greatly.
Jane

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Hi,

Tell us some more. Where is your father-in-law being treated and who are his doctors. I agree with the others on this board that a Stage IV patient does not have some powerful pain meds at his disposal. My dad had several combinations --- so longer lasting, others when he had higher pain issues during the day. And I agree with Eric the doctor's told us to stay away from the tylenol because of its blood thinning properties. I think he needs a pain management consultation and to have a combo of pain medications on hand so he can use them if needed. It is always so much worse if they wait til the pain is out of control.

As for your hope that he would be restaged and surgery will be available. Unfortunately that probably isnt really an option. Depending on the type of tumors in the liver you may want to explore theraspheres to treat the liver tumors.

What clinical trial is you FIL participating in. I have fairly negative feelings about stents from my experience with my dad and others I have known. It is important to monitor the pain and make sure the stent stays in place. If radiation shrinks the tumor it may slip into the stomach and cause complications. Or if the tumor continues to grow it can crush the stent, or create other problems. There are other problems with spasms and increased sensitivity to hot and cold liquids which can bring on spasms. These can last for several moments to several minutes. I hope your FIL has success with the stent but I am concerned about your discription of the surgeon forcing it.

Good luck,
Cindy

pjlee123
Posts: 14
Joined: Sep 2011

Ah -- one more thing -- after a little googling:

Looks like there's a minimally invasive surgery option for those with low grade cancer (stage I or II maybe) with an intent to cure -- and then a different kind of option for stage IV EC called photodynamic surgery, with the intent of removing the inner layer of the esophageal mass to open things up. Sounds like this may be the least popular option, maybe due to risks of perforation.

TerryV's picture
TerryV
Posts: 916
Joined: Jul 2011

MIE, THE, and Iver Lewis (IL) are offered to patients in stages 1 - 3.

I have never heard of photodynamic surgery, but perhaps others here have. It hasn't been mentioned in my time on CSN. Interesting link on PDT (PhotoDynamic Therapy) http://omlc.ogi.edu/pdt/ptinfo/esophca/esophtreatment.html

The medical field is a wonder though. Things are always changing.

Prayers to you and family, PJ.

Terry
wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11

pjlee123
Posts: 14
Joined: Sep 2011

Hey gang, all this prompted more research. Here's a very good article on treatment options. The article's target audience is mainly doctors.

My summary: Multiple minimally invasive options are out there, including photodynamic therapy, plain old esophageal balloon dilation, laser and chemical ablation, etc, but it sounds like stents are the best option. Sounds like stents got a very bad name for years because early versions were too big and bulky, and doctors didn't start to treat until esophageal narrowing was severe or complete. Now we have smaller stents, and doctors are learning they have to balloon dilate and place stents EARLY -- not late (as in my FIL's case).

There ARE lots of complications and side effects with stents -- as described -- but for my father in law, who suddenly couldn't eat and who didn't want a tube (yet), I'm not sure what else we could have done.

It does sound like the Mayo doc should have done serial dilation before placing the stent given that he was almost 100% stenosed, and it sounds like she should have admitted him overnight for observation in case of perforation or other serious side effect.

Article link: http://www.moffitt.org/CCJRoot/v6n1/article7.html

Copy and paste of some key tidbits:

The author reviews the literature on optimal endoscopic lumen restoration techniques, including dilation, thermal laser and chemical ablation, photodynamic therapy, and stents. Procedures for pain relief and nutritional support are also presented.

Results: Lumen restoration to relieve dysphagia and provide the opportunity for sustaining reasonable peroral nutrition is an essential element in the overall management. Nonsurgical lumen restoration procedures have much to offer for dysphagia palliation and are briefly reviewed in this presentation. The major options include ablation of intraluminal tumor mass by thermal laser, photodynamic laser, chemical ablation, peroral dilation, and placement of esophageal stents. Most patients require more than one palliative method to sustain lumen patency during the course of their disease.

All too often, quality of life is neither protected nor supported adequately between the stage of recognized incurability and death. All-out 11th-hour, relatively heroic efforts should not occur or, at most, should be the exception. Proven palliative measures are safer, less expensive, and more cost effective when applied at the first indication of need. This is especially true for those techniques designed to relieve the dysphagia of malignant esophageal obstruction.

Peroral dilation should begin as soon as possible in patients with dysphagia. When proper instruments and techniques are used, risk in dilating a malignant stricture either before, during or after radiation therapy is minimal.

There is no evidence that properly performed esophageal dilation of obstructing carcinoma carries an unacceptable risk. Failure to dilate a malignant esophageal stricture is due more to a lack of proper training of the physician or surgeon in dilation therapy than to inherent dangers of the methods.

One helpful application of laser ablation is for pre-stent ablation of a polypoid, eccentric intraluminal mass that typically would either cause acute angulation and partial occlusion or prevent suitable anchoring of a stent (Figs 1A-B). Other special cases in which laser or other thermal ablation may help include hemostasis for necrotic chronic bleeding lesions and for ablation of tumors obstructing a stent by overgrowth at either end or by ingrowth through an uncoated metal expandable stent.

Transendoscopic injection of absolute alcohol, using a standard sclerotherapy needle, has been reported as safe, simple, and effective. Initial results are similar to laser therapy.15 The injected tumor necroses and sloughs within several days after absolute alcohol injection. Repeat sessions are needed as with laser ablation. In the small number of cases reported thus far, complications have been rare, and costs above the basic endoscopy charge are minimal.

Photodynamic Therapy
Photodynamic therapy (PDT) begins with administration of a chemical photosensitizer that accumulates in higher concentrations in neoplastic tissue than in normal tissue.13,16-19 This chemical, porfimer sodium (Photofrin II, Quadra Logic Technologies, Vancouver, British Columbia), is given intravenously in a dose of 2 mg/kg of body weight. After approximately 48 hours, the area of cancer is exposed to a red light with a wavelength of 630 nm provided by a continuous-wave argon-pumped dye laser via a quartz fiber passed through a standard videoendoscope. This light exposure initiates a chemical reaction of the porphyrin compound within the cells that leads to production of oxygen radicals that destroy the cells. .... Transient side effects include odynophagia, chest pain, low-grade fever and, uncommonly, minor pleural effusion. There is a 1% perforation rate reported in the largest series to date.13

Esophageal Stents
Palliation of dysphagia due to esophageal cancer by placement of peroral stents has been performed for over 100 years but was not safe and effective until the 1950s.

There is a developing consensus that esophageal obstruction due to either fibrosis from radiation or residual recurrent neoplasm is best managed by dilation followed by peroral stent placement.2,3,29

If dilation therapy has failed, a peroral stent may be inserted through the adequately dilated stricture using only mild sedative analgesic medication and an anesthetic gargle. When malignant strictures have been neglected and severe lumen stenosis has developed, it is necessary to plan adequate dilation over several sessions before stent placement. The literature has clearly demonstrated that those who dilate severe strictures and place stents in a single session have unacceptably high perforation rates.30

When proper technique is used, the perforation risk for peroral esophageal stents will be less than 5% and the mortality near zero. In our recent series of 212 plastic stents, the perforation rate was 2.8% and stent-related mortality was 1.8%.

Usually, only one or two days of hospital observation is necessary unless the patient is suffering from other problems associated with advanced disease. Some reports indicate stent placement can be done on an outpatient basis; however, at least one overnight period of observation is prudent, considering the physical status of these patients.34

As with other palliative therapies, increased risk and technical difficulty are concerns for lesions in the cervical esophagus and at the gastroesophageal junction.35,36 Cancer in the cervical esophagus also presents problems for stents and other therapies, but stents are safe and effective at this location in approximately two thirds of patients.36-38 Lesions of the lower esophageal and gastric cardia can be effectively stented but do present potential technical problems.35

Once some metal stents are placed, they cannot be easily repositioned and are either very difficult or impossible to remove.23 In some cases, malposition can be compensated for by placing a second stent overlapping (piggybacking) the first.

Plastic and metal stents become dislocated in 5% to 10% of cases but usually can be properly repositioned.

Food impaction is not a complication of a plastic or fully deployed metallic stent per se. It is usually due to a lack of patient education or noncompliance with instructions for proper food selection, chewing, and swallowing. Stent diet instructions, verbal and written, should be given to patients and family members or caregivers prior to patients’ discharge from the hospital.3

Current models of stents are safe. The major risks result from an untrained operator, the pre-stent dilation, the placement apparatus and technique used, the premedication or general anesthesia, and the post-placement dietary management.29 One danger of making devices easy to use is that those who are ill-prepared to use them will assume that simplicity of placement equates with safety. Anyone who assumes responsibility for application of a technique, regardless of its publicized simplicity and efficacy, is responsible for having a thorough understanding of the disorder being treated, its indications, its contraindications and the principles of long-term management before attempting use of the method.

The timing for placement of either plastic or metal expandable stents is important for procedure safety, quality of life, and duration of survival. This short survival is in some measure due to the habit of late referral. Unfortunately, physicians in past years have neglected to refer patients for stents until very late in their illness. Nearly all series report the average survival after stent placement to range between three and five months.6,11,38-40

However, stents do allow the patient to enjoy the pleasures of oral alimentation and less time in the physician’s office or hospital during the relatively short interval before death. At present, too few patients are informed of a peroral esophageal stent or given the option to have one placed early enough to provide optimum benefit.

The increase in enthusiasm for esophageal stents is impressive and long overdue. Needless to say, the development of metal expandable stents and insertion devices of small diameter have much to do with this trend. The unacceptable complication and mortality rates associated with plastic and silicone esophageal stents occurred after development of commercial insertion devices that were larger and more rigid than necessary.30 The other major negative factor in plastic stent safety was the practice by some of rapid dilation of a malignant stricture at the same sitting the stent was placed. An apparatus that was too large and rigid, combined with overly vigorous dilation of malignant strictures, proved to be a dynamic duo with unfair mechanical advantage over a very diseased and weakened esophagus and patient.

However, the pendulum is rapidly swinging in favor of stents.

A peroral stent to restore and maintain lumen patency usually is well tolerated, can significantly improve quality of life, has a low procedure-related morbidity and mortality, requires a minimal hospital stay, and does not require regular repeat treatment sessions. A stent is the least expensive, fastest, and most desirable method to maintain lumen patency sufficient for adequate caloric intake and the related pleasures of drinking and eating.

unclaw2002's picture
unclaw2002
Posts: 664
Joined: Jan 2010

Thanks for the info. I wanted to learn more about this treatment and found this fact sheet from the NCI --- Photodynamic Therapy http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic (cut and paste into your browser).

Photodynamic Therapy is an FDA approved treatment for Esophageal Cancer (there are more studies ongoing to expand its use in the treatment of cancer) ... below is a part of the fact sheet. Note this type of treatment appears to be for Barretts and for early stages of EC, when the tumor is smaller and not indicated when the cancer has metastasized and reached Stage IV.

3.What types of cancer are currently treated with PDT?
To date, the FDA has approved the photosensitizing agent called porfimer sodium, or Photofrin®, for use in PDT to treat or relieve the symptoms of esophageal cancer and non-small cell lung cancer. Porfimer sodium is approved to relieve symptoms of esophageal cancer when the cancer obstructs the esophagus or when the cancer cannot be satisfactorily treated with laser therapy alone. Porfimer sodium is used to treat non-small cell lung cancer in patients for whom the usual treatments are not appropriate, and to relieve symptoms in patients with non-small cell lung cancer that obstructs the airways. In 2003, the FDA approved porfimer sodium for the treatment of precancerous lesions in patients with Barrett esophagus, a condition that can lead to esophageal cancer.

4.What are the limitations of PDT?
The light needed to activate most photosensitizers cannot pass through more than about one-third of an inch of tissue (1 centimeter). For this reason, PDT is usually used to treat tumors on or just under the skin or on the lining of internal organs or cavities (3). PDT is also less effective in treating large tumors, because the light cannot pass far into these tumors (2, 3, 6). PDT is a local treatment and generally cannot be used to treat cancer that has spread (metastasized) (6).

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Hi there, just wanted to give you our experience with Mass General Hospital in Boston.
They have an excellent Esophageal Cancer team and a website, too. We headed down there when Steve was still being staged. We had done some research and hoped to be a candidate for PDT. After his EUS, they staged his tumor at T-3--too far along to be a candidate for PDT.
Unclaw2002 is right--this is for early stages of EC.
Jo-Ann

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

PJ,
Please be cautious of the dates on your research. This moffitt article is from 1998! Most of this information is dated and much research since then has shown much different information.

Just sayin'.

-Michelle

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

I've had PDT. It is only for very early stage EC. I wouldn't know if they give it for Stage IV for any comfort means. I think they also offer it for barretts high grade dysplasia, but I also think they do a HALO or something for that as well. I get a check up on 28th, so I'll let you know if it's working then. But it is only for very early stage EC

pjlee123
Posts: 14
Joined: Sep 2011

Hey all -- just spoke with my father in law and wanted to post an update.

He's stage IV adenocarcinoma with mets to lymph nodes and liver. Three rounds of chemo, well tolerated so far.

He had the esophageal stent put in a couple of weeks ago. This was after he lost 10 pounds in a couple of weeks and was starting to have trouble even getting liquids down.

He had a lot of pain for several days after the stent was placed. No prescription for narcotics was given, as we discussed above.

Thankfully now the pain in the lower esophageal region has gone down to very mild and only when swallowing. He's able to eat almost anything now with the exception of breads. He even shot a deer hunting last weekend and was able to enjoy some venison, which was just huge for him. He looks forward to deer hunting season all year long.

He says he basically feels like a normal person again -- although he does also have some new, mild heart burn from time to time. That and the mild pain when swallowing (at the top of the stent, he says) aren't quite normal -- but a revelation compared to where he was pre-stent.

Thanks again to all those who offered their opinions and experiences.

I'm sure there will be more dark days ahead, but I'm just glad he's doing so well for now.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network