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Stage IV Mastasized to Lungs-Newly Diaganosed

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Hi Everyone,

I am brand new to this board.  I was diagnosed in 2015 with Endometrial Carcinoma FIGO II,G2, treated with TAH-BSO.  On April 26 I was given my results and am now FIGO Stage IV since it has mastasized to my right upper lung lobe.

I have been told by my Radiation Oncologist I will be receiving 5 consecutive rounds of radiation and then see my Gyno Oncologist for chemo treatment.  It has been explained to me that this metastasis is not curable but treatable.

I am finding that the doctors won’t give me any definite answers.  They seem to dance around the subject when asked if this is terminal, or what the mortality rate is for this kind of diagnosis.  I understand they do not like to do this however, I am very realistic and am the type of person who needs to know approximately.  If it’s a year or 10 years.  I also understand it is hard for them to say as we do not know yet how I will respond to treatment.  I have read that the prognosis of this is not favorable, if the mass/tumor is over 2 cm you have less chances of survival past 1 year. My question is, does this go into remission or has it gone into remission?  Has anyone gone into remission?

Anyone willing to talk/share their experience, I would be very appreciative of this. 

To all of you who have survived and are going through this now and perhaps again, kudos to you for being strong courageous women.  I beat it first time and you will too.  I cannot stress how important it is to keep that positive attitude.  It worked for me, yes there were days I was down and out but you must pull up your boots straps from the depth of despair and rage on…YOU CAN DO THIS…YOU ARE STRONG ENOUGH TO BEAT THIS!!  Please take those words to heart.  Surround yourselves with support, be it here, internet, facebook, or in person, home, group therapy, whatever, you need that push.

Thanks for listening and sorry for being preachy.  I am still reeling for my news.  Still very emotional.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1523
Joined: Jun 2015

spudcat, so sorry for your news. Welcome to our board. You will find loads of support, understanding and information here. There are several ladies that have experienced similar issues as you are facing. I'm sure they will be along soon to share. Stay strong and please come back as you move along this next wave of your journey.

Love and Hugs,

Cindi

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

TeddyandBears Mom, thank you so very much.  I truly appreciate this forum.  I am ever so grateful to have a place to come and mingle and share and support my fellow sisters

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

I can empathize with your desire to have a more definitive understanding of your future with this unfortunate recurrence. But I suspect one reason that your doctors are hedging their answers more than they might have in the past is due to the increased use of new treatments like immunotherapy that have really just begun to enter the mainstream after years in trials.

If someone has the genetic profile to benefit from one of these new treatments, all the prior estimates of life expectancy are off the table for now. As you may have read in the posts originated by "Little_Sister757," her sister is scheduled to start on Keytruda, an immunotherapy as a front-line treatment, instead of her doctors first trying conventional chemotherapy. While other ladies on the Board have also been given Keytruda, this is the first time that I can recall where it's been used as a first-line treatment outside of a trial for someone on (or related to) to a member of this site. 

And if you didn't receive chemotherapy as part of your initial diagnosis in 2015, the conventional chemotherapies may work well for you now as your body hasn't developed a resistance to those drugs.

There are a number of ladies who still post that are/were Stage IVB, some with recurrences. While you wait for some of them to respond, you can also search older posts for terms like "recurrence" "Stage IV" or "metastasis" to read what some of those ladies have gone through and their results – again keeping in mind that they didn't all have the option of trying some of the new treatments now available.

I'm sorry you had to join this site after being NED (no evidence of disease) for several years, but you will find lots of support from those on this site as you embark on the next battle in your own war with cancer.

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

cmb:  also thank you for responding.  I am zooming around the board and reading so much.  thank you for the hope and the information.  When I meet my chemo doctor I want to have loads of information and questions to ask.  This info you have given is excellent. 

My goodness, this morning I was sobbing in despair and 12 hours later I feel releived I am not alone, someone is out there willing to offer support.  I truly appreciate everything!!

I hope I will also be able to help a fellow sister with my knowledge, information, education or experience.

Again, thank you

pattiann45
Posts: 22
Joined: Sep 2010

spudcat,

 

I am sorry to hear about his. Can you tell me anymore about the orignial diagnosis.  For example,  did they tell you about myometrial invasion?  Did they take out any lymph nodes?  Regarding your new diagnosis, is the metastasis in one site only?  Have you had a pet scan?

 

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Hi Pattiann,

Thank you so much for responding, I really appreciate it.  This is taken off my medical chart from the doctor, I have access to my chart online. I hope this helps

Endometrial Carcinoma FIGO II,G2, No LVI, treated with TAH-BSO with LND and radiation.  They took out 9 lymph nodes that tested negative.  

The metastasis is in my right lung, main bronchi upper right lobe.  I had a stent put in howevery, on the day of my diagnosis and the CT Scan for the tatoos they saw the stent had migrated and I was admitted to hospital to have it removed.  I was released yesterday.  

Upon my check up with the oncologist, ( I go every 6 months and this was my 2 year anniversary) I asked about a dry cough I had had for about a month, she decided to do an x-ray, from there I had a CT SCan where they found the tumor.  I was escalated to the Cancer Assessement Centre where the head of the centre took my case and ordered, Bone test (PET scan), CT of Pelvis, Abdomen, MRI of brain, Endobronchial ultrasound (EBUS) biopsy which is where they found the cells.  My tumor is 3.5 cm.  From what the Oncologist said it was one cell that attached to the bronchi.  Not sure if she said that to make me feel better or not, also I am not sure it really matters if it is one cell or many, it's all the same in the end. 

I truly appreciate this forum.  Looking around, this gives me "hope" not for a cure but the fight to keep going and prolong my life.  I was googling (bad bad idea) about prognosis and mortality and was devastated.  However, I came here and this has opened up so many doors and espcially hope.  Sometimes a little hope is all one needs to get out of the depth of despair.

Also it is so nice to be able to have a place to come and talk to others who are experiencing or have experienced similar situations.

Thank you again!

 

 

 

pattiann45
Posts: 22
Joined: Sep 2010

Spudcat,

 

I am sorry that you are going through this.  You are correct in that googling never turns out well.  I have read several studies where a pulomary recurrence, especially when solitary, can be surgically removed.  Can I ask did you have any cts of the lung prior to or after your diagnosis?  Before the one that you just had?

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Unfortunately no. I asked when both my GP and Onco about testing after the first bout of this 2 years ago and the response was, only if you show signs.  It is too expensive to test everyone and what exactly would we test for, there are so many forms of cancer.  I didn't know any better back then and left it as it was.  Then guess what?  Signs showed up and here I am. 

I live in Canada, I know this is a USA site but I have found that the USA has much more information and are more forth coming with information, support and assistance.  I hope by being Canadian that doesn't boot me out of here.

Oh yes with regards to surgery, they have state this is inoperable.  With that said, when I meet with my original surgeon I am going to pose this question.  It could be due to where the tumor is located which is on my main bronchi in the upper right lobe. 

 

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

Welcome! We have plenty of people from other countries; as ConnieSW says, no borders! With regard to testing, many members doctors say, post treatment, that they go by "symptoms". I think that is a bunch of crap -- if you wait until you have symptoms then it's often further along when it's caught. I couldn't tell from your previous posts if you were scheduled for stereotactic radiation or not; you refer to tattoos - usually used for external radiation - but I wasn't clear what happened after that. Have they discussed a more focused radiation, such as CyberKnife?

pattiann45
Posts: 22
Joined: Sep 2010

makes me so angry!  Escpecially for early stage 1-2 EC's.  THEY DO NOTHING!!!!!  I could go on and on about this, but will save for another time.  Radiation can really do a lot!  Keep in mind that some 50 percent of EC cancer can be treated with radiation alone. As I have said to others:  I would request next generation sequencing of the tumor tissue.  Potential immunotherapy coupled with radiation and chemo could be very effective.  I have been thinking about you a whole lot, and sending positive thoughts and prayers your way.  Please keep us updated, and feel free to PM if you ever need to vent to someone.  I would be happy to listen.

Warmly,

Patrice

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2572
Joined: Mar 2013

spudcat, when I was first diagnosed I asked if there was anything to read online and was told:  stay off the internet.  Stats are old and you are statistic of one.  As you see, there are good women here and they are here to lend and ear and tell you what they have experienced.  You are not alone.

ConnieSW's picture
ConnieSW
Posts: 1432
Joined: Jun 2012

.Members of this group come from all over the world. We are human beings first here. No borders. Wish that were the way of the world. 

By the way, we are neighbors. I live about 20 miles from the New York/Canadian border. 

Northwoodsgirl
Posts: 519
Joined: Oct 2009

Welcome to the forum! Wish it was under better circumstances. You have come to a good place for first hand information from your “sisters” in the fight of our lives. Others have provided you with some great suggestion. Many of us have learned what to ask and demand in order to survive. I can tell you are a strong woman and have been through a lot. The uncertainty is so hard to deal with. We just want the BEST plan of ACTION to overcome cancer.  

Look up the NCCN website for the standard of care for your stage/grade and reoccurence. Personally in my case I had 26 lymph nodes removed plus a para aortic node.  I will keep you in my prayers. ((HUG))

Lori

DKK
Posts: 8
Joined: Oct 2017

welcome! You will find the kindest and most wonderful support group here.

i just wanted to expand on what cmb  said.  It is absolutely true that the docs no longer feel comfortable saying you have 2 years left, or whatever. It is due to the new targeted and immunotherapies that have skewed all the old results.  

A dear  friend PhD cancer researcher told me the survival charts are FIVE years old!   Five years in medicine, like technology, means the numbers are obsolete.  Moreover,  as an article from the WSJ or NYT recently  noted, docs are even hesitant to recommend hospice. One doc recounts his experience where he placed a patient in hospice but she ended up getting a type of immunotherapy.  She walked out of hospice and has no active disease. So the vaccines and immunotherapis and targeted anti cancer drugs are changing the entire survivalists landscape.  While that is difficult for us living in uncertainty, it’s also the good news.

evolo58
Posts: 293
Joined: Dec 2017

We look at survival rates for Stages III and IVs and shudder ... until we look more carefully at the numbers.

Take this site itself: https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/survival-rates.html

Fifteen percent for Stage 4B! Scary! And it is. Survival rates for Stages III and IV ARE scary. But another look at the text shows that these include people diagnosed between 2000 and 2002! Treatment and medical knowledge have  changed siginficantly in the last 16 years or so.

Well, then, if's off to another site:  https://seer.cancer.gov/statfacts/html/corp.html. The rate is so, so much higher at 16.3! (A little sarcasm there.) But a look at that data shows that data was collected between 2008 and 2014. A little more of a cause of concern because the data seems closer to 2018, but again, things have changed a whole lot in ten years!  Admittedly, though, the 2008 data might be useful for 10-year suvival rates ... for now. 

It does concern me that suvival rates are inching up, rather than going up significantly. I can't lie there. But the more I look into this cancer, including various studies. the more contradictory and confusing the results are. 

These survival rates, by the way, include women who refused treatment, women who unfortunately did not have access to good medical care for their cancer, women who were much older at age of diagnosis, women with co-morbitiies that severely affected treatment, etc. The cancer.gov site allows you to enter some variables, such as race and age of diagnosis, but there are so many others. 

And here is the punchline ... there are some women who have the most dire prognosis who beat the odds and suvive for many years! It is no wonder that doctors are reluctant to provide survival rates. This is a caprcious, unpredictable disease that I think can even confound oncologists. 

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Thanks so much ladies, I really appreciate all of you!!

I had my first radiation treatment today on my lung.  I am tired as it was a busy day, treatment and calibration the machine, meeting with the nurse to go over side effects, then meeting with my Rad Onco. which wasn't planned, they sprung that on me when I arrived. 

What I found out from her, (when she told me the original diagnosis I had a hard time listening to anything after) my tumour is in operable due to it being on the main bronchus on my right lung.  The tumor is also wrapped around the bronchus which is what was causing the narrowing of my airway. 

DerMaus: I had external radiation on my pelvis first time, this time it is my chest.  I do not know what CyberKnife is and not sure I would be eligible due to where the tumor is situated. 

I am in radiation until May 8 and I also visit with the chemo team to discuss if chemo is the right course for me or what would be.  This, is what .  radiation oncol told me today.  I hope not wish, no pray they can do another course of action instead of chemo.  But I am afraid with my luck and from what I have researched it looks like it will be chemo.

I also wanted to ask you ladies...have any of you tried a holistic approach?  I am curious because I saw a few videos on youtube and a couple articles where people opted out of the traditional chemo -radation and cured themselves or maintained their health (for uncured/advanced cancer) with a holistic approach.  I do not know much about this area and was just curious.  There is SO much information out there that is can be quite overwhelming and my head starts to spin.  I am curious and have made it a part of research to find out more.

Pleae feel free to share.

ConnieSW:  I'm in Ottawa Ontario so we are neighbors!!

 

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

CyberKnife is stereotactic radiation. It's high dose - much higher than external beam - directed at a very small target area. It's used w/brain tumors, prostate cancer, lung cancer, etc., to treat tumors that are in otherwise inoperable locations. Definitely ask about it. While there are a few people on this board who've done 'holistic' treatment instead of chemo/radiation, you'll find many more who've combined the two using supplements and other approaches to support their body before, during and after traditional treatment. I'm sure you'll hear from many members on this topic. What chemo combination did you have previously? 

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Thank you so much for the information. I'm not sure if they call what I'm getting CyberKnife or not but I'm getting five intense radiation treatments externally to my chest. I have not had chemotherapy before this will be my first time. I see the chemo doctor tomorrow to discuss the plan. I'm also going to ask them about immunotherapy. 

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

If you're having 5 intense treatments then you're probably having CyberKnife or a version thereof. That's very good news ! I had almost no side effects from mine, other than tiredness. Chemo + radiation is good - if your body can handle it - because it ramps up the kill factor on cancer cells. Let us know what they say about immunotherapy, and good luck!

barnyardgal
Posts: 208
Joined: Oct 2017

I was diagnosed last September and I'm 3a. I wasn't thrilled about going through chemo but, while not fun, it is definitely doable. I was allergic to the standard Taxol and carboplatin regime, so I did adriamyacin and carboplatin. I did get sick and I did lose my hair, but after the first few days I felt much better. While I think eating healthy, exercising, etc is an important part of dealing with cancer,  I would not count on it to get rid of or manage cancer without chemo or radiation. Even athletes and really healthy people have gotten cancer. So while I don't want to do chemo or radiation I do it because the odds are better. I had chemo 6 times, and am now getting radiation 25 times. After the doctor would like me to do 1-2 more times of chemo.

I agree that survival rates have increased. When I first looked at the statistics the survival rate is 58% for 3a. After talking with my oncologist (who didn't want to quote statistics) said with chemo and radiation it's now more like70-75%. And that stastic includes people who are older and less healthy than I am according to my doctors.

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I'm a science geek just out of interest, and I've seen no reliable evidence anywhere that holistic/alternative treatment can cure or extend life for this cancer. I've seen enough good evidence of the value of alternative therapies for supporting our bodies during the fight and to supplement the chemo/radiation treatment, that I am working with a naturopathic oncologist in addition to my traditional docs.

ConnieSW's picture
ConnieSW
Posts: 1432
Joined: Jun 2012

Beautiful city-love the tulip festival. 

spudcat's picture
spudcat
Posts: 12
Joined: Apr 2018

Thanks ladies much appreciated.  I begin my chemo May 17.  6 rounds with 6 hour infusions each time carbo/taxol.  Seems my radiation onc didn't tell me everything!!  I have mets in both lungs, small tumors but in both lungs and only 1 larger wrapped around my main airway on the right lung. 

I finished radiation on Tuesday May 8 and saw my original surgeon/chemo dr after that. 

Thank god for my surgeon/chemo Dr. she laid it all out on the line. 

I am scared of course and of the steroids and those side effects, mostly the agression and insomnia .  Any sugguestions or stories you'd like to share, I'd love to hear them.

I had to book off work, excuse, I was forced to leave work due to this disease!!  Holy jumping that bugs my butt!! I am a temp so no benefits and no job to go back to Frown my contract was finishing at the end of July..  Oh well, it is what it is.  I am staying positive and feel good going into chemo (strong just scared to tears) I hope this works and I can go back to work once all this is over.  I figure at least 1.5 to 2 years for recovery, but we will see how I am feeling at that time. I might need to take an early retirement!!

Thanks for reading ladies, stay strong and fight like a girl!!

 

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

spudcat, I'm just slightly ahead of you on this journey. My first round of chemo was May 2. Like you, I have mets in the lungs and am scheduled for 6 rounds of carbo/taxol. I've also had my tumor sent out for molecular analysis, in case there are mutations it shares with different cancers, making immunotherapy an option.

As the ladies here often say, "rough but doable." I don't know what regimen your onc will put you on, but mine had me take a fair amount of dexamethasone the night before and the morning of chemo, then I was given more via my port, along with other things like benadryl.

I had no aggression but I did have diarrhea of the mouth ;) My husband wouldn't let me drive to chemo because he thought I might go 100 mph.

Day 1 (chemo day) was fine. I had a mild reaction to the Taxol -- a weird forboding feeling in my chest -- and they stopped the infusion for 30 minutes, then restarted it at a slower pace. The rest of the day was uneventful, thank goodness.

Day 2 was a normal day except for the revved feeling dex gave me. My poor husband, who took medical leave to be with me. I think I never stopped talking.

Day 3 was very bad for me. The dex washed out of my system ("the steroid cliff") and everything hit at once -- the room began to spin, I heard hissing in my ears, I got an instant migraine, a wave of nausea hit me, I started to shake all over, my hips and thigh bones started to ache, and I had trouble moving. I was getting dressed after my shower and I called out to my husband. He got to me just as I passed out and saved me from hitting my head on the tile bathroom floor. He said I was out for 10-15 seconds. Thank goodness I wasn't on the stairs.

The nausea never got very bad, thanks to the advice from this forum: Stay ahead of it. I started the anti-nausea meds immediately and set an alarm to take the next round, even if it was in the middle of the night. I never got sick. The bone pain, however was pretty bad, I won't lie to you. After watching me whimpering for 12 hours on Day 3, my husband called the gyn onc on call and they put me back on a tiny bit of dex, just a day's worth. That made a huge difference. I'm allergic to most opioids and opiates, so I couldn't take anything else. Tylenol certainly didn't cut it.

Days 4-5 were not great but not horrible. I was mostly just fatigued and uncomfortable from a bit of bone pain (despite the claritin I was taking, thanks to the forum). I found it was better when I moved around.

Day 6 and on has been fine. A little tired, nothing awful, I'm back to hiking 3 miles a day to stay active. They say that physical activity actually helps you feel less fatigued and so my husband rousted my a** from the chair each day -- and I found that to be very true.

The insomnia was pretty bad -- I didn't sleep for 40+ hours after the first infusion, though I desperately wanted to. Even now, I'm still not having the best rest. I started taking melatonin (10mg, prescribed by my naturopathic onc and approved by my gyn onc) and that has helped quite a bit.

Good luck to you and keep us posted!

derMaus's picture
derMaus
Posts: 558
Joined: Nov 2016

My first day experience was pretty much like Tamlen's: I had a slight initial reaction, they backed it off and pushed in slower, no further effects. They started me with the standard steroid dose of 20 (cc? mg?). I always take sleeping meds so was only a little restless that night, not horrible, except for an itchy face (I'm that way with some narcotics, too). Next day I had lots of energy from the residual steroids, which tapered off over the next couple of days. Fortunately, I never had the crash that some do, and didn't get sick for about 4-5 days. When I did get sick it was just like a mild case of the flu, not dramatic, but I stayed in bed for two days - not an issue I was on long term medical leave. Please remember that you have some control over your infusion, even if you're not informed of that. I pushed them to keep reducing the steriod dose until at the end I was only getting 10 units. If you're too 'speedy' after your first dose, you can push for a reduction on the second one. I didn't really have bad nausea until right before the 4th round, which makes sense as the effects are cumulative. I had intermittent diarrhea and killer farts, but that's normal. While I didn't have any bone pain, I had wierd random shooting pains throughout my body that lasted about 5-10 seconds (also typical). I didn't find out about probiotics until part-way through, and wish I'd started massive doses earlier. Also glutamine can help with neuropathy. I won't lie, it's super scary the first time but after that it's very predictable and becomes routine. You'll do great with all the good advice to be had on this forum!

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

"I had wierd random shooting pains throughout my body that lasted about 5-10 seconds" ... I had exactly this (except they were a little more throbbing than stabbing) and felt like such a weirdo. Glad to know it wasn't just me (not that I'd wish pain on anyone!). I felt like a pinball machine. What random spot was gonna hurt next?

CheeseQueen57's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

I put my excessesive steroid energy in to baking different kinds of muffins for the infusion staff. It endeared me to them and I baked some exceptional muffins.

LisaPizza's picture
LisaPizza
Posts: 208
Joined: Feb 2018

Man, I never had that steroid energy.

cmb's picture
cmb
Posts: 354
Joined: Jan 2018

I didn't have any infusion-related reactions from either of the two chemo "phases" I underwent as part of my frontline chemo treatment. (These two phases with different drugs were planned from the beginning and not a result of any problems with the first phase drugs).

Side effects from Phase 1 (Paclitaxel/Carboplatin) were leg pain for three days each cycle, hair loss, nausea, diarrhea and fatigue. But I was able to work part-time as a management consultant during this period.

Side effects from Phase 2 (Ifosfamide/Mensa/ Doxorubicin) were more severe. Nausea, diarrhea and fatigue were all far worse, especially the week after the hospital stay when I needed additional fluids and antiemetics. I did little consulting work during these cycles.

I was not particularly affected by the steroids. I was given a prescription for Ativan (lorazepam) and told to take it for the first couple of nights after the infusions. I did and I slept fine. Like LisaPizza, I (sadly) did not have any extra steroids energy.

And like Tamlen, I did take the anti-nausea drugs on a regular schedule to control the nausea, which helped, but didn't take the queasy feeling away entirely.

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