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New Diagnosis

SaraB
Posts: 7
Joined: Sep 2018

My dear 70yo Mum has just been diagnosed with EC (adenocarcinoma) but we won’t get all the staging details till Wednesday.  I was starting to only think the worse thanks to google, but thanks to your hopeful stories, I’m starting to breathe again.

i thought because she had symptoms that it automatically was a dire situation, and there would be nothing we could do, but it’s not necessarily the case right?

I’m not ready to say goodbye. 

Also, is there a good list of questions I should have ready to ask the Doctors?

Thank you.

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Good morning Sara

It’s good that you’ve found this forum because there are many survivors of Esophageal Cancer.  All of us can identify with your shock and sadness at learning your mum has been diagnosed with this cancer.  Let’s face it—no cancer is good—but this one doesn’t have a good track record.  That said “there is hope”.  So the best thing you and your mum can do is make yourself aware of what is being done in the medical field today.  We’ve come a long way from the time when a Dr. Ivor Lewis back in the ‘40s first began to perform surgery on patients who had been diagnosed with Esophageal Cancer.  The type of surgery he performed was called the “OPEN” surgery, (Transthoracic) and it did involve 2 massive incisions and took a longer time to recover.  Of course, these patients were “pioneers” in that before that time there was not much hope of surviving. 

Thankfully, now we have newer methods of surgery, and more experienced surgeons, a better knowledge of Esophageal Cancer, and how best to treat it.  That said, the procedure your mum will follow will depend on the “staging” of her cancer.  We always pray that it will be a stage that is operable.  If however, it is staged as a IV, that will mean that the cancer has spread to more than one major organ.  In that case, there are palliative measures that can be taken, but a surgical solution will not be among them.  Most often they will include radiation and chemotherapy.  And then of course, all things depend on the individual patient and their state of physical health overall.  If she has other problems as well, the treatment recommended will have to take that into account.   

But for the time being, I think a letter I wrote recently to another family member will be helpful to you as well.  And so, I will give you that reference, rather than repeating it all here.  I can assure you that when you go over these references, you will have plenty of questions you want to ask.  Furthermore, expect answers, be an advocate for Mom, and just don’t sit back and let the doctors do all the talking.  Hopefully, she has a good team of doctors.  But we here always recommend having a SECOND opinion because often the first diagnosis may not be correct. 

So here is that reference:  https://csn.cancer.org/node/317799

Since it has 17 references, I won’t list them all here again.  But reference #7 will include QUESTIONS TO ASK.  So start a journal, keep all copies of your mum’s medical reports, scan results, etc. and be aggressive in getting the answers.  And when you don’t understand something, and that will be much of the time, ask to have it explained.  It’s your mum’s life.  And we know how you love her and “NO” none of us want to part with those we love at any time.  But actually, believe it or not, I used to think 70 was “old”—now I think “70” is still young and there are many years of enjoyable life left.  When it is possible to be treated successfully, a person can return to their normal way of life and will not be left “debilitated” as a few newbies that have just been diagnosed here have mistakenly stated recently. 

My husband’s story is one of success, and you want to “hold” on to that same possibility for your mum.  He was 65 when he was diagnosed with Esophageal Cancer, Stage III (T3N1M0).  (Adenocarcinoma at the Gastroesophageal junction).  That will make more sense to you later on—now it’s just a number.  His only symptom was a hiccup each time he began to eat. 

But it meant that all four walls of his Esophagus had been infiltrated with cancer, and it had spread to 2 lymph nodes next to the Esophagus.  Pre-op treatments of 5-FU and Carboplatin plus 25 treatments of radiation successfully eradicated the tumors.  But we had already been told that the only way to be certain the cancer had been eradicated was to have surgery.  Pre-op treatments are called “neoadjuvant” therapies.  If more treatment is called for after surgery, it is called “adjuvant” (post-op). 

Thankfully, my husband had the latest laparoscopic type of minimally invasive procedure and I can’t stress enough the importance of finding a qualified medical team that is thoroughly trained and has performed many of these surgeries.  It will mean a shorter hospital stay with a quicker return to a normal lifestyle with fewer complication possibilities.

 My husband had his “Ivor Lewis Minimally Invasive Esophagectomy” (MIE) on May 17, 2003 at age 66, and is now still enjoying life at age 81 with no evidence of disease.  He was in and out of the hospital in 5 days and downtown Pittsburgh, PA shopping with me on Day 8.  He was operated on by Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC) on May 17, 2003.  Now I know this is miraculous, but our story is true, and hopefully it will lift your spirits to know that there are many long-time survivors here.

So it is my hope that your mum can go on to have an enjoyable life and many more years of happiness with you and her loved ones and that there will be a happy ending to what is not now what we would call a “good beginning.”

There’s an old saying, not original with me, but it does mean that we have to endure a lot to “get to the end of the rainbow” and for us that “pot of gold” is a successful treatment series that results in no more cancer.

Remembering that “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” 

May God bless you and give you wisdom in what will be many stress-filled days of uncertainty for now, but with a happy ending.

Love & prayers,

Loretta

__________________________________________ 

1.      https://csn.cancer.org/node/317799

 Reference links #7 and #8 mentioned above will be of utmost importance for you to study.

__________________________________________________ 

2.     https://www.cancer.org/cancer/esophagus-cancer/about/what-is-cancer-of-the-esophagus.html

_________________________________ 

3.    WILLIAM’S TREATMENT SCHEDULE WAS AS FOLLOWS:

  • ·       Week 1 ~ (02-10-03) ~ Chemo 96-hr. continual infusion of Carboplatin/5-FU (Fanny pack)

 

  • ·       Weeks 2, 3, and 4 ~ (02-17-03) ~ 5-day-a-week radiation treatment.  (No CyberKnife equipment (targeted radiation) in this area in 2003, but now we do have one in our Tidewater area.)

 

  • ·       Week 5 ~ Combination radiation plus SECOND chemo continuous 96-hr. infusion  (Fanny pack)

 

  • ·       Week 6 ~ (03-17-03) ~Final week of radiation.

 ·       Repeat PET Scan on 04-28-03 ~ results - COMPLETE ERADICATION OF TUMOR  in Esophagus and the 2 affected lymph nodes 

           Surgery was scheduled approximately 3 weeks later after successful pre-op treatment.  Radiation does cause scar tissue, so the sooner the surgery after the pre-op treatments—the better. 

______________________End of references________________

SaraB
Posts: 7
Joined: Sep 2018

Loretta, you and your husband are a total inspiration.  You certainly have given me hope.

 

Thank you so much for your heartfelt and valuable advice.  I can't wait read everthing you have so lovingly supplied to all the other folk out there who have been given this hurdle to jump.

 

I will keep you posted and let you know how we get on this week with all the details of Mum's condition.

 

God bless you both. xx

 

SaraB
Posts: 7
Joined: Sep 2018

So the initial report by the surgeon is that it’s stage II/III with no mets. However we don’t see the oncologist till tomorrow morning. So fingers crossed the diagnosis doesn’t change from that. He believes it’s treatable, perhaps curable. In Australia, they don’t do the MIE, so looks like big surgery will be on the cards down the track - which concerns me more than the chemo. 

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello Sara,

I was supposed to have the laparoscopic surgery, but they ran into too much scar tissue from a previous surgery and had to switch to an open surgery midstream.  From what I've heard here, the MIE surgery is much better as far as quickness and ease of recovery, but the open surgery is certainly a better option than not having surgery at all.  My biggest issue recovering was that I developed pnuemonia, which is unrelated to the type of surgery.  If not for that, I think my recovery would've been relatively quick & painless.  Stage II/III is early enough that surgery will probably be an option for you guys.  That's a good thing.  Chemo/radiation followed by an esophajectomy gives the best odds of beating EC permanently.  It's certainly not a fun ride, but it is doable.

Best Wishes to You Guys,

Ed

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Sara

Believe it or not—this is good news, especially that there are no mets.  Stages less than IV fall into the surgical category.  So let us know exactly which type of Esophagectomy it will be.  Here in the states, we have mainly the “TTE”, the “THE” and the “MIE”. 

There is the Transthoracic Esophagectomy (TTE) commonly referred to as the OPEN.

Then there is the Transhiatal Esophagectomy which is not as invasive as the TTE. 

Then of course, now there is the “MIE” (minimally invasive) which is preferable.  

So ask the surgeon the specific name of the surgery they perform.  Hopefully, it is at least the “THE”.  In any event, even though the OPEN surgery takes the longest to deal with because of the massive incisions, Mum will go through the “new normal” adjustment process of eating.  Then, of course, sleeping in an elevated position to keep the stomach acids from creeping back up to the throat, and causing awful episodes of acid reflux.  But both those things are part of the “new normal”.  That’s a small price to pay for “life after an EC diagnosis.  If she has no other medical problems that she has to cope with, she could live a long life after 70 with a successful treatment.  And there are many success stories, even though at the beginning we thought it would mean death when my husband was diagnosed at 65.  And look at him—still cancer free at age 81. 

It’s always good news when you can have the surgery despite the type of surgery.  There are videos on the web that shows “excerpts of the surgery” and if you’ve the stomach to watch it, Surprisedyou will have a better understanding of what is going to take place.   If Mum is in good health otherwise, she should come through like a champ.  But be forewarned, she may weather the surgery better than the chemo.  Sometimes side effects from the chemo will make one think they will never last long enough to have the actual surgery.  But for some, chemo is brutal, for others it can have minimal side effects.  But at this point, we will rejoice and pray that the staging doesn’t change. 

Check in again as time permits.

Love Loretta

SaraB
Posts: 7
Joined: Sep 2018

Thank you again for your support Loretta. You certainly are a wealth of knowledge, kindness and very good advice in regard to the fear that is overwhelming me at the moment.

I will let you know how we go tomorrow. 

 

Hope you and hubby are both well. Xx

SaraB
Posts: 7
Joined: Sep 2018

So the verdict is still the same, although he did mention cancer signets (which research tells me this isn’t great), but they still classed it as stage 2 adenocarcinoma. I believe if the numbers of signets are below a certain level, they don’t change the name to SRC (signet ring carcinoma)????

But she has a laparoscopy next week, followed by the insertion of a pic line, then chemo starts. 3 rounds of EPC with one of them staying insitu with a pump the whole time, being topped up weekly. (I‘d never heard of chemo given like that before). Then all going well, surgery about 4-6 weeks after chemo. They are saying chemo after surgery also - all going well.

So will take each day as it comes. So chemo first.... so will be doing plenty of research in regard to getting her through that as best as possible. She’s already lost about 7 from not being to eat much - so have to ‘bulk’ her up as much as possible. 

 

Thank yoi again. This is an amazing source of facts and hope. X

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Sara ~

Here are some additional references that might help you in researching the best possible outcomes for your mum.  I am wondering why a pic line is going to be used instead of a port for your mum’s chemo treatments.  The port is more versatile.  I’ve had one for years.  If I need an infusion of any type, meds, chemo, etc. it is put directly into my port.  The picc line is going to require a lot of maintenance whereas I have no maintenance issues with my port.  I love it.  So unless there is some specific medical issue with your mum that she can’t have a port put in, that is definitely the better way to go.  My nurse flushes my port after each treatment, or about every 6 weeks when I’m not in active treatments.  So I would discuss that with her doctors and ask, WHY A PICC LINE?  For that reason I’ve included a reference that tells you the difference between the two.  I’m also giving you a couple of references of women talking about their ports, and also a longer “medical procedure video” showing physicians inserting one for the first time.  It’s a 17 min. video showing exactly how a port is implanted.  My husband also had a port implanted prior to the start of his chemo treatments.  I felt no pain and love my port.  I’ve had 3 different hydrations and an iron infusion in the past month, plus a regular chemo treatment.  I would hate to think that I had to have nurses search for a vein each time I needed some type of infusion. Some people are afraid of a port and prefer to get stuck with a needle each time they need some kind of treatment.  Uggghhh

As for a picc line-- I really would be inconvenienced by something sticking out of my arm that had to be constantly tended to by me when not in use.  With a port, everything is under the skin!  (This is woman talk:  Can you imagine how difficult it is to go to the bathroom with one hand “tied behind your back so to speak?” Often I have to go to the ladies’ room during my long infusions of chemo.  Remember you have to push the IV pole with you to the bathroom.  It’s on wheels of course.  And that’s problem enough not getting the lines tangled while you’re using the restroom.  Bottom line, I would insist on a port, unless there is some medical reason why mum can’t have one.)

Here is a link with pictures of what a picc line looks like:

1.      https://www.bing.com/images/search?q=picture+of+a+picc+line+on+a+patient&qpvt=picture+of+a+pic+line+on+a+patient&FORM=IGRE

Then I’ve included some references that will be helpful when you know what types of chemo she will be given.  (Chemocare.com) is excellent for knowing side effects so you can know what to expect.  I’ve had multiple sessions of Carboplatin/Paclitaxel (Taxol).  I say that “Taxol” “takes-all” your hair away, so be forewarned if that is part of her prescription.  Then I wrote a letter to “Brian from the North” once when his mom was about to undergo chemo and he wanted to know some hints.  So I’ve included a reference for that.

And as for “Signet-ring adenocarcinoma” I don’t understand enough about that to comment intelligently, but I’ve included a reference for that which is well “above my pay grade!” 

So these are just “homework assignment” articles for your information. But my best suggestion is if there is no specific reason why mum cannot have a mediport inserted that is definitely superior to a pic line.  So stress that you want that for her if at all possible instead of a pic line! 

Hoping for the best possible outcomes for you and mum,

Loretta

P.S.  Incidentally, I’m in active treatment myself so if you don’t receive answers from me quickly, I may not feel particularly like doing any homework myself on the day I hear from you, but will try to get back with you ASAP.

_________________________________________________________________ 

2.     https://www.youtube.com/watch?v=AMqZXel1sag

Mediport Catheter Procedure: What to expect ( porta cath for chemotherapy )

________________________________________________________________ 

3.     https://www.youtube.com/watch?v=hmVGLbSrJU4

Step by step guide on how to place a port catheter ( port a cath ). Performed by Ken Ramirez RPA-C. Filmed and edited by Sarel Gaur MD.

___________________________________________________________________________________ 

4.     https://www.bing.com/videos/search?q=video+accessing+mediport+for+chemo&view=detail&mid=299E7A533DFD24A7F67E299E7A533DFD24A7F67E&FORM=VIRE

_______________________________________________________ 

5.     https://www.webmd.com/heart-disease/what-are-central-venous-catheter#1

“What Are Central Venous Catheters?

In this Article

Often when you need medicine, you just pop a pill in your mouth, down some water, and go about your day. But at other times your doctor may need to give you drugs or fluids that go right into one of your veins.

If you only need it for a few days, like when you’re healing from surgery, you’ll likely get a regular intravenous tube (IV). It’s thin and about an inch long. It goes into your arm or hand. But if you need care for longer than that, you might get what’s called a central venous catheter. It’s also called a central line.

A CVC is also a thin tube, but it’s much longer than a regular IV. It typically goes into a large vein in your arm or chest.

When Would I Need One?

The key with CVCs is that they can stay in for weeks or even years, depending on the type. That can make long-term treatment a lot easier.

If you get needles or a regular IV over and over, they can damage your veins. Plus, constantly getting stuck with needles can take a toll on you. And, if you get a lot of medicine through an IV, you might feel it burning every time it goes in.

A CVC helps you avoid those problems.

Your doctor may use it to give you medicine for pain, infection, and other conditions, such as cancer or heart issues. They can also be used for taking samples for tests and to give you fluids, nutrients, and blood.

For example, you might get a CVC if you need:

There are different types of CVCs. Which one you get depends on several things:

  • What you need it for
  • How long you’ll have it
  • Where in your body it goes

This is something you would talk over in detail with your doctor. Here’s more on three of the types:

PICC Line

A PICC (peripherally inserted central catheter) line goes into your arm and runs all the way to a large vein near your heart. The other end may have one or two tubes, called lumens, that stick out of your arm just above your elbow. That’s where the medicine goes.

When you need a PICC line, first you get some medicine so you won’t feel any pain. Then, your doctor uses a needle to insert the tube. She’ll have ultrasound or fluoroscopy (it’s like a live X-ray) to help guide the tube into place.

Your doctor then takes the needle out and puts a bandage, called a dressing, over the area where the PICC went in. This keeps it clean and dry, which helps you avoid infection.

You’ll need to flush your PICC line and change the dressing often. A nurse will show you how to do this.

Port

Also called an implanted port, this is a thin tube with one or two discs on one end. It goes entirely under your skin, discs and all. You usually get it in your chest, just under your collarbone.

To give you treatment, your doctor places a needle through your skin and into the disc. To keep you from feeling pain, you can get a cream to rub on and numb the area where the needle goes in.

To get a port, you need a short, minor surgery. You’ll be awake for it, but you’ll get drugs to help you relax and prevent pain.

Your doctor makes two small cuts, then slides the tube into a vein until it gets right near your heart. Then, she places the disc end of the port into a pocket between the two cuts. Your doctor closes both cuts with stitches or a special glue called Dermabond.

When you’re done, you’ll have just a small bump where the disc is. Because it’s totally under your skin, a port doesn’t limit day-to-day activities as much as other CVCs.

You can’t play contact sports such as football or hockey, but once you heal from the surgery and get your doctor’s go-ahead, you can swim, bathe, and shower as usual.

It can stay in for years, and when not in use, it doesn’t require as much care as a PICC line or tunneled CVC.

Tunneled CVC

Most times, this one also goes into your chest around your collarbone. One end goes near your heart. On the other end, just like a PICC line, you’ll have one or more lumens where your doctor can insert medicine.

When you need a tunneled CVC, you get medicine to help you relax and to make sure you don’t feel any pain. Your doctor makes two small cuts, then she eases the catheter into your vein and guides it toward your heart. The other end goes in the tunnel between the two cuts, and the lumens hang 6 to 10 inches out of your chest.

There’s a cuff in the part that sits in the tunnel, which helps hold the catheter in place. Your doctor then uses stitches to close the cuts and puts a dressing over both.

You might be a little sore after getting the catheter in, but that will pass within a couple of days. You’ll need to flush it and change the dressing regularly.

WebMD Medical Reference Reviewed by Melinda Ratini, DO, MS on December 13, 2016 ”

____________________________________________ 

 6.     https://www.healthline.com/health/breast-cancer-navigator/central-venous-catheters-picc-lines-versus-ports#1

“Central Venous Catheters: PICC Lines versus Ports

One decision you may need to make before beginning chemotherapy is whether you want your oncologist to insert a central venous catheter (CVC) for your treatment. A CVC, sometimes called a central line, is inserted into a large vein in the chest or upper arm.

Catheters are long, hollow plastic tubes that make it easier to put medicine, blood products, nutrients, or fluids directly into your bloodstream. A CVC can also make it easier to take blood samples for testing. Your oncologist may also decide a CVC is necessary if you’ll need to have continuous infusion chemotherapy, or treatment that lasts for 24 hours or more, or have treatment while at home. Some chemotherapy drugs are considered harmful if they leak outside your veins. These are called vesicants or irritants. Your oncologist may recommend a CVC to prevent this from occurring.

CVCs are considered more manageable than a regular intravenous (IV) catheter because they can stay in your body longer. Some CVCs can be left in your body for weeks, months, or years. But a regular IV catheter can only stay in for a few days. This means your oncologist or nurse will have to reinsert multiple IVs into your veins over the course of your treatment.

There are different types of CVCs that are used, but the most common are peripherally inserted central catheters (PICC lines) and ports. The type of CVC you’ll need depends on a few of the following factors, including which one your oncologist prefers:

  • How long you’ll need chemotherapy
  • How long it takes to inject your chemotherapy doses
  • How many drugs you’ll receive at once
  • Whether you have any other medical problems like blood clots or swelling

What’s a PICC Line?

A PICC line is put into a large vein in the arm by your oncologist or a specially trained nurse. The insertion doesn’t require surgery. Once the PICC is in place, the catheter tube will stick out of your skin. These are known as “tails” and you may have more than one.

Having catheters, including PICCs, outside of your body carries a risk of infection. To reduce the risk, you’ll need to take special care of the tube and the skin that surrounds the area where the line is inserted. The tubes also must be flushed every day with sterile solution to prevent blockage.

What’s a Port?

A port is a small drum made of plastic or metal with a rubber-like seal across the top. A thin tube (the line) goes from the drum into the vein. Ports are inserted under the skin in your chest or upper arm by a surgeon or radiologist.

After the port is put in place, you may only notice a small bump. There won’t be a catheter tail outside of the body. When it’s time for the port to be used, your skin will be numbed with a cream and a special needle will be inserted through the skin into the rubber seal.

PICC vs. Port

Although PICC lines and ports have the same purpose, there are a few differences between them:

  • PICC lines can stay in for several weeks or months. Ports can stay in as long as you need treatment, up to several years.
  • PICC lines require daily special cleaning and flushing. There’s less to care for with ports since they’re under the skin.
  • PICC lines can’t get wet. You’ll need to cover it with waterproof material when you bathe and you won’t be able to go swimming. With a port, you can bathe and swim.

To help get a better idea of what having a CVC may mean for you, you may want to ask your oncologist these questions:

  • Why are you recommending I should have a catheter or port?
  • What are the possible problems that can happen with a PICC or port?
  • Is inserting a catheter or port painful?
  • Will my health insurance cover all of the costs due for either device?
  • How long will the catheter or port be left in?
  • How do I take care of the catheter or port?

Work with your oncology treatment team to understand all the benefits and risks of CVC devices.”

________________________________________________________ 

7.     https://www.healthline.com/health/chemotherapy -

 Chemotherapy

 What Is Chemotherapy?

Chemotherapy is an aggressive form of chemical drug therapy meant to destroy rapidly growing cells in the body. It’s usually used to treat cancer, as cancer cells grow and divide faster than other cells. A doctor who specializes in cancer treatment is known as an oncologist. They’ll work with you to come up with your treatment plan.

Chemotherapy is often used in combination with other therapies, such as surgery, radiation, or hormone therapy. This depends on:

  • the stage and type of cancer you have
  • your overall health
  • previous cancer treatments you’ve had
  • the location of the cancer cells
    • your personal treatment preferences

It’s considered a systemic treatment, which means it affects the entire body.

While chemotherapy has been proven to effectively attack cancer cells, it can cause serious side effects that can severely impact your quality of life. You should weigh these side effects against the risk of not getting treatment when deciding if chemotherapy is right for you…”

______________________________________________________ 

8.     http://chemocare.com/

Drug Information - Find the latest information about chemotherapy drugs including how they work, their potential side effects, and self-care tips while on these therapies.

Managing Side Effects - Find the latest information about potential side effects of chemotherapy.

Nutrition During Chemotherapy - Practicing healthy eating habits throughout cancer treatment is essential. Staying hydrated and maintaining muscle tissue with enough fluids, calories and nutrients can reduce treatment delays, boost your immune system and help minimize debilitating side effects such as fatigue.

Navigating reliable, useful information can be overwhelming. We want to help you and your caregivers with suggestions for maintaining a healthy diet during chemotherapy…”

________________________________________________________ 

9.     http://csn.cancer.org/node/301646

[My note:  This is a letter I wrote to Brian explaining things I learned during my chemo sessions]

“Hello again Brian,

This letter is an answer to what I promised you earlier about things I found helpful during my chemo sessions.  I decided to put it in a separate topic so that others might find the information useful as well.  Hopefully this will help you to understand what your Mom may experience during her chemo sessions.  It’s good to know that your Mom has tolerated her first chemo well. 

The way people respond to chemo will vary from one person to another, even though the chemo combinations may be the same as far as the types.  So below my name I will give you “a ton of” references as what one can expect while having these chemo treatments.  So you might want to print this letter out and read it when you have at least 15 minutes! As for Mom, it may be that she tolerates all of her treatments extremely well.  It may be also that as she progresses, the treatments may take a toll on her physically.  Either result will be normal, keeping in mind that chemo is never a “piece of cake”, but it is tolerable and can be very effective.  It has been for me…”

_____________________________________________________________ 

10.                  https://www.ncbi.nlm.nih.gov/pubmed/15788671?dopt=Abstract

“Signet-ring cell or mucinous histology after preoperative chemoradiation and survival in patients with esophageal or esophagogastric junction adenocarcinoma with esophageal or esophagogastric junction adenocarcinoma.

Chirieac LR1, Swisher SG, Correa AM, Ajani JA, Komaki RR, Rashid A, Hamilton SR, Wu TT. - Author information

 Abstract - PURPOSE:

The survival of patients with local-regional adenocarcinoma of the esophagus or esophagogastric junction (EGJ) treated with preoperative chemoradiation is much better in patients with pathologic complete response than those with residual tumor. Some adenocarcinomas have mixed patterns, including signet-ring cell and mucinous histology, but the clinical significance of these subtypes is unknown…

CONCLUSIONS:

Our study showed that patients with esophageal or EGJ adenocarcinoma who have signet-ring cell or mucinous histology benefited substantially from preoperative chemoradiation and esophagectomy.”

________________________________________________________________________________ 

11.                        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4616218/

[MY personal note:  The contents of this article are definitely “above my level of comprehension”, but since it has to do with Signet-ring cell carcinoma, I have put it here.  Signet rings can be found in more than one type of cancer.)

World J Gastroenterol. 2015 Oct 28; 21(40): 11428–11438. - Published online 2015 Oct 28. doi:  10.3748/wjg.v21.i40.11428

PMCID: PMC4616218- ID: 26523107

“Signet-ring cell carcinoma of the stomach: Impact on prognosis and specific therapeutic challenge

Simon Pernot, Thibault Voron, Geraldine Perkins, Christine Lagorce-Pages, Anne Berger, and Julien Taieb - Author information ► Article notes ► Copyright and License information ► Disclaimer

Abstract

While the incidence of gastric cancer has decreased worldwide in recent decades, the incidence of signet-ring cell carcinoma (SRCC) is rising. SRCC has a specific epidemiology and oncogenesis and has two forms: early gastric cancer, which can be resected endoscopically in some cases and which has a better outcome than non-SRCC, and advanced gastric cancer, which is generally thought to have a worse prognosis and lower chemosensitivity than non-SRCC. However, the prognosis of SRCC and its chemosensitivity with specific regimens are still controversial as SRCC is not specifically identified in most studies and its poor prognosis may be due to its more advanced stage. It therefore remains unclear if a specific therapeutic strategy is justified, as the benefit of perioperative chemotherapy and the value of taxane-based chemotherapy are unclear. In this review we analyze recent data on the epidemiology, oncogenesis, prognosis and specific therapeutic strategies in both early and advanced SRCC of the stomach and in hereditary diffuse gastric cancer.

Core tip: Contrary to others gastric cancer, the incidence of signet-ring cell carcinoma (SRCC) of the stomach is rising worldwide. SRCC has a specific epidemiology and oncogenesis and has two forms: early gastric cancer, which can be resected endoscopically in some cases and which has a better outcome than non-SRCC, and advanced gastric cancer, which is generally thought to have a worse prognosis and lower chemosensitivity than non-SRCC. Its poor prognosis may be due at least in part to its more advanced stage. Therapeutic strategies are emerging but still controversial, as the benefit of perioperative chemotherapy and the value of taxane-based chemotherapy…

Core tip: Contrary to others gastric cancer, the incidence of signet-ring cell carcinoma (SRCC) of the stomach is rising worldwide. SRCC has a specific epidemiology and oncogenesis and has two forms: early gastric cancer, which can be resected endoscopically in some cases and which has a better outcome than non-SRCC, and advanced gastric cancer, which is generally thought to have a worse prognosis and lower chemosensitivity than non-SRCC. Its poor prognosis may be due at least in part to its more advanced stage. Therapeutic strategies are emerging but still controversial, as the benefit of perioperative chemotherapy and the value of taxane-based chemotherapy.

INTRODUCTION

Gastric cancer (GC) is a major public health problem, with 951000 new cases identified worldwide in 2012, representing 6.8% of all new cases of cancers. During 2012, 723000 patients died of a gastric cancer, accounting for 8.8% of deaths from cancer[1]. GC is the fifth most frequently diagnosed cancer and the third leading cause of cancer-related death in the world. Despite a decrease in the overall incidence of gastric cancer in recent decades, the incidence of signet-ring cell carcinoma (SRCC) is constantly increasing, in Asia, the United States and Europe, accounting for 35% to 45% of gastric adenocarcinoma cases in recent studies[2,3]. Its incidence increased 10-fold between 1970 and 2000[4]…”

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12.                        https://www.bing.com/images/search?q=picture+of+a+signet+ring+adenocarcinoma&id=47EF976CF8EFA03834A9610F186DBCC62823412F&FORM=IQFRBA

Images of what signet-ring cell carcinoma looks like

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SaraB
Posts: 7
Joined: Sep 2018

HThe laparoscopy revealed cancer in the stomach lining. Surgery is now off the cards.

Pretty devastated, but almost glad in one way that she won’t be going through surgery. 

Chemo is now full steam ahead - will wait and see what that brings.

After watching the ‘Truth About Cancer’, I want to stop her having all treatment. 

Trying to think positive, but struggling.

Have got her on CBD oil, Ambrotose and as much fresh juices as possible... eating is getting hard.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Sara

While age 70 is not too old to have an esophagectomy, I’m sorry that circumstances have changed.  I’ve read that often stomach cancer and esophageal cancer are misdiagnosed.  If the lining of the stomach is filled with cancer, that certainly erases the possibility of using the stomach for a new gastric tube.  Indeed it is all daunting.  As for treatments they aren’t easy either.  So how does Mum feel about it all?  I am so sorry because this turns everyone’s life upside down.  And then when you get this news, let’s be honest, it leaves a bleak outlook.  Life is so fragile, and often we just go through life not realizing how fragile we are.  Then all of a sudden, sickness strikes, and our whole world changes and our whole outlook on life.  Life’s plans are changed for us, and we realize that we’re not going to ever get to do the things we once dreamed of.  Maybe it’s that dream trip that we put off because we were so busy working.  To say the least our priorities are rearranged and not by us. 

For me as a terminal cancer patient, I think I know some of the things that are going through Mum’s mind.  It’s difficult to not dwell on the end of your life, and try to make the most of what you have left.  And then there’s the family.  They usually are in between a rock and a hard place.  In your case, you probably are going to know more about her diagnosis than she does.  Just how much do you want to share with her?  And the rest of her family members, do they shy away and try to act normal when “nothing is normal” anymore? 

As for me as a realist, I want to know as much as possible, and I don’t want my friends to pretend that things are not all that bad.  Some don’t know what to say, so they tend to stay away because they feel uncomfortable bringing up the subject.  Before my husband and I were diagnosed with cancer, we felt the same way.  How do we talk to them now?  Do we want to bring up the subject or wait until they say something?  For us, we told all our friends and family.  We discussed the possibilities and we wanted them to all be “in the loop.”  We’ve discussed with all the family what we want when the inevitable time arrives.  For us, we want to be made as comfortable as possible in our pain, but no “life-sustaining” measures are to be taken when our body is shutting down.  For us, we think this makes it easier for all the children.  No one has to feel guilty about the decisions they might have faced had we not made our wishes known.

So Sara, please use the Chemocare.com reference if Mum decides to proceed with chemotherapy.  It will give you good information on drugs prescribed for her.  In her case, if no surgery is planned, then palliative care is given, and that is usually in the form of chemo and radiation.  But it is not an easy road, and for Mum there seems to be no easy road.  That goes for you as well.

I note you say that you are giving her CBD Oil and Ambrotose.  Did the doctors suggest that? You might be interested to read some of the medical alerts that have come out recently.  And as for “eating becoming hard”, I will tell you that this may be the case as it was for me.  I began to lose weight rapidly.  When eating, I could only take 2 or 3 bites of food and I simply could not eat any more.  If I tried to force it down, it only made me nauseous.  A scan revealed multiple tumors in my stomach that was displacing the amount of food I could eat.  I had to begin another series of chemo treatments to try to reduce those tumors.  For a time it has worked, but I again find myself with no appetite and not being able to eat any appreciable amount of food at any one time.  I am currently in treatment with Carboplatin/Paclitaxel (Taxol), but this will be the last of that medication.  I will have to switch to some maintenance pill.    Eating is a problem for me.  I cannot try to force the food down because that only causes nausea.  So if Mum says, “I simply cannot eat anymore”—believe her!

As for juices, fluid intake also fills the stomach, but have her drink as much water as possible during the day.  But drinking during meal time will keep her from consuming her solid foods.  I know my doctors say, “drink as much as you can and avoid caffeinated drinks of any kind as they lead to dehydration.”  I’ve even had to go into the lab for hydration more than once.  I’ve also had to go for “iron infusions” and “potassium”.  If Mum is dehydrated, she will be practically lifeless and will have no energy.

Sara I know your heart is broken.  I know Mum’s heart is broken too.  So do the best you can for her in the days that lie ahead, but let her make the choices.  Only she knows how she really feels, and I hope she shares those feelings openly with you.  Both you and she are in my prayers, and I had so hoped that things would work out that the diagnosis would be one that could have a positive ending.  But if you have questions as the days progress, if you think any of us on the forum can be of help, please let us know.

Love

Loretta

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Just for quick reference I will list the Chemocare.com site again in case chemo is decided upon, plus a few other references. 

1.     http://chemocare.com/

Drug Information - Find the latest information about chemotherapy drugs including how they work, their potential side effects, and self-care tips while on these therapies.

Managing Side Effects - Find the latest information about potential side effects of chemotherapy.

Nutrition During Chemotherapy - Practicing healthy eating habits throughout cancer treatment is essential. Staying hydrated and maintaining muscle tissue with enough fluids, calories and nutrients can reduce treatment delays, boost your immune system and help minimize debilitating side effects such as fatigue.

Navigating reliable, useful information can be overwhelming. We want to help you and your caregivers with suggestions for maintaining a healthy diet during chemotherapy…”

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2.     https://www.medicalnewstoday.com/articles/319475.php?sr

Does CBD oil work for chronic pain management?

Last updated Fri 16 March 2018 …”

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3.     https://www.medicalnewstoday.com/articles/317221.php?sr

Everything you need to know about CBD oil

Last updated Fri 27 July 2018 …”

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SaraB
Posts: 7
Joined: Sep 2018

Thanks again for your reply Loretta.

Yes, the oncologist is aware of the oil, ambrotuse and juicing. He said they will do her no harm. 

My best friend was stage 4 breast cancer (liver mets) and has been clear for over a year now - on paper she should not be here - but believes Ambrotose is what got her through.

At this stage, I don’t think we‘ve got anything to lose to be honest apart  from flying to Tijuana to go to the biomedical clinic - we are in Australia.

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