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Newly Diagnosed and Scared!


#1

Hello all,

I’m Devon and I’m a senior in high school. Last week I was diagnosed after a surgeon biopsied the pleural lining of my lung during a seemingly unrelated surgery that was correcting a reccurant spontaneous pneumothorax. The surgeon removed a tumor in the lining of my lung measuring .5cm and believes that he achieved clear margins but pathology seems hesitat to say for sure because the tissue surrounding the tumor was inflamed. At this point following a full body PET
scan, it is believed that my lung was the primary location of this disease.

I am scheduled to have a port placed next week and to begin chemo the following day. There are two things that I am especially nervous for as I begin this process:

  1. The Port. I am confused about how it will look, feel and how they will access it each time I go through chemo. Prom is in three weeks and although it seems insignificant in comparison, it is my senior prom and some normality is important to me. I’m unsure of whether or not I’m going to have a huge bandage on my shoulder or whether I’m going to have a lump or what will happen. Has anyone had this? What is it like?

  2. The effectiveness of the chemo. Obviously I have heard from many people that chemo is not as effective on our type of cancer (yay us!) than on other types. Unfortunately because my cancer was found in the lining of the lung, they will likely be unable to radiate the area as it is long, skinny and curved and they cannot aim the radiation that well as of yet. I am very wary of the effectiveness of chemo and am confused and unsure of how to proceed. What is everyone’s experience with chemo and synovial sarcoma?

Thank you all so much! I am so grateful to have this support system of people going through things similar to what I am going through!


#2

Here is a picture of me about 4 or 5 days after they installed the port. You can see the lines running from the port. They are inserted with big scary needles into the port but you actually barely feel anything when they do that:



#3

You are amazing and a great help to everyone. God bless you.

Marie DeMari


#4

HI Devon - my tumor was 7cm and found in my left lung. I was immediately taken in for surgery as due to the size and it's location (attached to my pericardium) they wanted to remove it first. I underwent surgery and then chemo, radiation. As far as the port, I was asleep and dont remember much. The port was covered for a day or two but is embedded under the skin and is not visible unless that area is exposed. It's a small incision that is made approx 4 inches in length. I didn't have anything sticking out of it. You may want to wear a nude bandage over it if your chest area will be exposed for prom. Your treatment is your decision but from what I understand surgery chemo and radiation (not necessarily in that order) are standard of care. I've had two different types and chemo and they have all worked but never long term. =( That's not the case for everyone, some have had success with chemo but our cancer is resistant to standard chemo (lucky us). I wouldn't change my treatment plan so far. It's given me 2.5 yrs that I wasn't promised back when I was diagnosed. Also, be sure you're being seen by a sarcoma specialist. If you go to sarcomaalliance.org they have a listing of specialists. Good luck with everything, hope this helps. Stay positive and be your own health advocate.


#5

I've had two different types of ports in my 24 year battle. The 1st was under my skin near my left shoulder and was not visible except for a small lump under my collar bone. It was in place for about 6 months. The 2nd type was exposed lines similar to the photo above. That was done last year while in the hospital for a clinical trail and was removed prior to being sent home.

I was given a mild sedative when both were inserted - it was not bad at all.


#6

I had a Hickman Line in the chest similar to the port above, got in the way about when showering etc and i gave it a yank a few times when moving in bed but apart from that you would never know it was there..

My Chemo was stopped after 2 doses as it wasnt working as well as they had hoped, although it never shrunk my lump it moved it slightly ,giving them enough margins to remove it ( 11cm neck ) was my 2 year op anniversary last month :)

All the best and keep chatting


#7

There you are Devon jimk is 24 years. Keep positive I'm 20 years in October.


#8

I'm a similar age to you, having the port put in is very unpleasant and it will feel strange for a few days. If you are receiving doxorubicin/ifosfamide then unfortunatley you will struggle to go to any social events anyway. Best thing to do is just keep your head down and get through your treatment for now. I had loads of similar questions to you at the start as I wanted to remain as socially active as possible. Unfortunatley though it is just not possible with high dose ifos and doxorubicin. It is a ruthless chemo and the side effects are quite harsh for most people. Not sure what doses you are having though so I could be wrong. The first cycle was a massive shock to my system, try not to put too much stress on yourself by trying to do too much, you will have to make sacrifices for now until you are better. Its just how it goes. Although the chemo did work on my cancer for a while, everyone is different but hopefully you should get a response :) Just being honest with you!

Good luck with everything.


#9

Devon,
I’m so sorry to read about your diagnosis. The port shouldn’t really be noticeable. It’s a safe way to get chemo into your body and to where it’s needed quickly. If chemo didn’t work for many with this form of cancer they wouldn’t use it. The effects of chemo are cumulative, you may be able to pull off the prom. I always assume the best. The power of positive thinking is amazing! I celebrated 20 years last September. I’ll be praying for you Devon.


#10

Hi Devon,

When I had chemo we actually did it through the veins in my arm. There was talk of a port but we tried the veins first.Maybe you could get it through the veins for the first round before prom then get the port after. Obviously your doctors know whats best but might be and option to talk about. Hang in there! I had gone close to 10 years misdiagnosed before I started getting treatment and I'm going on 7 years post treatment now.Hang in there and keep positive!


#11

Hi, Devon! Welcome to the group, sorry you have to join at all, but here are so many of us here who can relate to your fear- we are here for you!

As for your concerns, I'll answer as best I can- my husband was diagnosed in November of last year, and his tumor was in his right leg (until last week, yay!)

1) My husband's port was BARELY noticeable, He even removed the bandage a few days after the surgery. The bump didn't seem large, though he is a grown male so it might be slightly more obvious for you- I don't know though, they are pretty compact :) if you google "high neck/halter prom dress" tons of absolutely stunning dresses come up in Images, any of which should cover the port area (my husband's scars are - one on his right pectoral just below armpit level, centered above the nipple and also a tiny slit on the right front side of his neck, right above the collarbone )

2) He started chemo in the middle of December 2014, in a clinical trial that combined Ifosfamide+Doxorubicin with a trial drug called Pazopanib (also called Votrient) . He got through one round of chemo before stopping. He ran into a lot of complications and we decided to stop and move directly on to radiation and surgery. We don't know if chemo was effective, as he did it for such a short time, but it was very hard on him. Not everybody experiences that- be confident about the decisions you make with your body; try not to second guess yourself (it's hard) but ask lots of questions and be your own advocate. Do as much research as you can- Elodie here is freakin incredible and I'm sure she has a million pointers for you :)

Be brave, stay amazing <3

-Sky


#12

Hi Devon,

I'm sorry you have to join this group but it offers great support. My tumors are also in my pleura of my right lung.

I had surgery first to remove a 5cm tumor and resection of my right lung and then radiation. 3 month later it came back in another area of the pleura in my right lung. I had 2 rounds of chemo doxorubicin/ifex and the tumor continued to grow so chemo was stopped. I'm changed doctors and am now having 33 rounds of proton therapy,

I've been to MD Anderson in Houston for opinions and am now working with sarcoma group at University of Pennsylvania. Dr. Charles Simone is handling my case. Having gone the local Doctors route at the beginning I would suggest find Doctors who deal with sarcoma. Our is so rare most doctors have not treated it.

The port is no big deal, I hope if you start chemo now you will be up for the prom but I would prepare yourself in case your not. Being young you may spring back faster than I did.

I wish you all the best and will put you in my prayers.


#13

Hi Devon,

I am Debbie. I don't fit many of the profiles here as I am older. 62. I was diagnosed at the end of 2013. My ss started in my right foot. By the time it was found, there was huge tumors in all my lung fields. I am a testament to the fact that you are going to live until God decides it is time for you to leave this earth. I have many health problems. I had open heart in 2001. They removed emphysemous blebs from my lungs at the same time. I have been on oxygen in one form or another for at least 12 years. My lung function is very poor. I am an extreme case as many of the sarcoma folks are a younger and more healthy otherwise group. I mention this because I want you to realize the hope that each of us has above all else. Never let anyone tell you how long you have to live. Avoid that type of a conversation at all costs. It is full of negativity. Remain uplifted. Realize that you are not cancer and cancer does not own you. Never allow cancer to define you in any way. Find a sarcoma doctor that you are comfortable with. Think your choices through and don't be afraid to ask questions and make the best choices for you after you are informed. Meet others who are going through similar experiences, draw on their positive vibes and realize that all procedures, treatment, etc are somewhat different for each of us. Get your port. It will be a lifeline for you. They can draw blood from it, do treatment thru it and if its a power port, they will even use it for ct contrast, etc. Be very fussy about your port. Learn about it and insist on properly trained staff and proper technique at all times. Don't be afraid to speak up. You will do fine with getting the port. I have a double lumen which is nice for certain procedures, etc, but many seem just to have a single lumen. It is placed underneath your skin usually on your right upper chest It never felt funny to me at all. It does appear as one or two bumps (single or double lumen) under your skin. After a brief time, you will be able to shower directly on the port. You will not even be aware that it is there. I know it sounds crazy but you will get to like your port a lot. You will be able to swim, too. As far as the chemos, etc, see what your doctor thinks is best for you and go with a positive attitude. Don't expect problems and hopefully you will have none. Your doctors know how to treat your side effects and all to work a plan that is best for you. I am sorry you have to be on this site, but sarcoma was named the cancer of the year in 2014 and you are on the brink of many new treatments that some are boasting as possible cancer cures. Would love to be your friend. Claiming a complete absence of any cancer anywhere in your body in the precious name of Our Lord, The Great Healer. Debbie


#14

Beautiful and well said Debbie.


#15

Devon, you may want to talk to your oncologist about the prom if you haven't yet. He can probably schedule the chemo in such way that the prom falls the week before a new chemo cycle begins. This is when you will feel your best...

Regarding the effectiveness of chemo, studies have shown it can delay the return of disease (if your ss is ever going to return which you cannot predict).

Good luck!


#16

Hi Debbie! I so very much appreciate every uplifting and encouraging thing that everyone said to me following my post but I especially was encouraged by you. You are such a positive and wonderful woman who's faith is inspiring me to keep my own faith strong through this all. I would love to be your friend as well, thank you for everything you said and all of your prayers.

Debra said:

Hi Devon,

I am Debbie. I don't fit many of the profiles here as I am older. 62. I was diagnosed at the end of 2013. My ss started in my right foot. By the time it was found, there was huge tumors in all my lung fields. I am a testament to the fact that you are going to live until God decides it is time for you to leave this earth. I have many health problems. I had open heart in 2001. They removed emphysemous blebs from my lungs at the same time. I have been on oxygen in one form or another for at least 12 years. My lung function is very poor. I am an extreme case as many of the sarcoma folks are a younger and more healthy otherwise group. I mention this because I want you to realize the hope that each of us has above all else. Never let anyone tell you how long you have to live. Avoid that type of a conversation at all costs. It is full of negativity. Remain uplifted. Realize that you are not cancer and cancer does not own you. Never allow cancer to define you in any way. Find a sarcoma doctor that you are comfortable with. Think your choices through and don't be afraid to ask questions and make the best choices for you after you are informed. Meet others who are going through similar experiences, draw on their positive vibes and realize that all procedures, treatment, etc are somewhat different for each of us. Get your port. It will be a lifeline for you. They can draw blood from it, do treatment thru it and if its a power port, they will even use it for ct contrast, etc. Be very fussy about your port. Learn about it and insist on properly trained staff and proper technique at all times. Don't be afraid to speak up. You will do fine with getting the port. I have a double lumen which is nice for certain procedures, etc, but many seem just to have a single lumen. It is placed underneath your skin usually on your right upper chest It never felt funny to me at all. It does appear as one or two bumps (single or double lumen) under your skin. After a brief time, you will be able to shower directly on the port. You will not even be aware that it is there. I know it sounds crazy but you will get to like your port a lot. You will be able to swim, too. As far as the chemos, etc, see what your doctor thinks is best for you and go with a positive attitude. Don't expect problems and hopefully you will have none. Your doctors know how to treat your side effects and all to work a plan that is best for you. I am sorry you have to be on this site, but sarcoma was named the cancer of the year in 2014 and you are on the brink of many new treatments that some are boasting as possible cancer cures. Would love to be your friend. Claiming a complete absence of any cancer anywhere in your body in the precious name of Our Lord, The Great Healer. Debbie


#17

Hello!

My story is quite similar to yours in some ways. I had recurrent spontaneous pneumothorax too, I then had a pleurodesis (the surgery to stick your lung to your chest wall - i had the talc procedure) Two years later when I was 24 and pregnant we found out I had a 17cm tumour in my chest wall where the pleurodesis surgery took place. At the time it was deemed inoperable but my chemo worked so well that the surgeon eventually decided to give it a go. I had doxorubicin and ifosfamide and it reduced the tumour size dramatically. I then had the remainder of the tumour and my entire right lung removed (without clear margins) followed by radiotherapy.

Then I enjoyed a couple of years of NED (no evidence of disease) before i had a local recurrence last year. It's on my chest wall again and part of my diaphragm. Unfortunately it's too widespread for surgery so I just had ifosfamide again (worked really well again - tumour is half the size.) Just giving my immune system a break now and trying a tablet called pazopanib (votrient).

So in my experience chemo worked amazingly.. as far as the port, i'm not sure. I had a hickman line so i had two big lines coming out my chest but i could just tuck them in my bra. Like you though, I was getting married four weeks in to my treatment so I wanted to wear a dress and stuff too. They agreed I could get my first treatment through a vein in my hand and have my hickman line put in after the wedding.. maybe you could do that? Luckily if prom is only 2 weeks into treatment you should still have your hair and be feeling ok too :) It's definitely important to still maintain a degree of normality, i know what you mean!

Anyway, I hope you feel good and have an amazing prom and the treatment works well for you and isn't too tough. Debra is so right about being picky about your port, don't be afraid to say if you don't think people are taking enough care with it, it's an easy route in for infection so make sure people are dealing with it properly. It is a life saver, avoids all sorts of needles and problems like veins collapsing etc. She's also right on about not letting anyone tell you how long you might have to live.. I was diagnosed as terminal in 2010 and ended up in remission.

You are young and strong.. You can do this. When I spent time researching sarcoma I read that success rates are so much higher for tumours 5cm and less so you stand a great chance.

Best of luck! x


#18



Chelle86 said:

I have to say that you tell an amazing story! God Bless you! Keep believing. My largest tumor in the lung is around 14 cm. Ifos alone cut it about in half, but it's grown back now. Still, there is a lot happening out there right now. Look for the trial listed in Government trials under identifier # NCT02301039. They are recruiting right now in Pittsburgh, but although it may not be listed in the site, it is also in other select states as well. I was almost in, but my large tumors started to bleed and the risk was too great. There are some folks on here getting in. It is utilizing a single agent, pembrolizumab/pembro (MK-3475). This drug is being called a possible cure for cancer. Would love to be friends! Take care. Debbie.

Hello!

My story is quite similar to yours in some ways. I had recurrent spontaneous pneumothorax too, I then had a pleurodesis (the surgery to stick your lung to your chest wall - i had the talc procedure) Two years later when I was 24 and pregnant we found out I had a 17cm tumour in my chest wall where the pleurodesis surgery took place. At the time it was deemed inoperable but my chemo worked so well that the surgeon eventually decided to give it a go. I had doxorubicin and ifosfamide and it reduced the tumour size dramatically. I then had the remainder of the tumour and my entire right lung removed (without clear margins) followed by radiotherapy.

Then I enjoyed a couple of years of NED (no evidence of disease) before i had a local recurrence last year. It's on my chest wall again and part of my diaphragm. Unfortunately it's too widespread for surgery so I just had ifosfamide again (worked really well again - tumour is half the size.) Just giving my immune system a break now and trying a tablet called pazopanib (votrient).

So in my experience chemo worked amazingly.. as far as the port, i'm not sure. I had a hickman line so i had two big lines coming out my chest but i could just tuck them in my bra. Like you though, I was getting married four weeks in to my treatment so I wanted to wear a dress and stuff too. They agreed I could get my first treatment through a vein in my hand and have my hickman line put in after the wedding.. maybe you could do that? Luckily if prom is only 2 weeks into treatment you should still have your hair and be feeling ok too :) It's definitely important to still maintain a degree of normality, i know what you mean!

Anyway, I hope you feel good and have an amazing prom and the treatment works well for you and isn't too tough. Debra is so right about being picky about your port, don't be afraid to say if you don't think people are taking enough care with it, it's an easy route in for infection so make sure people are dealing with it properly. It is a life saver, avoids all sorts of needles and problems like veins collapsing etc. She's also right on about not letting anyone tell you how long you might have to live.. I was diagnosed as terminal in 2010 and ended up in remission.

You are young and strong.. You can do this. When I spent time researching sarcoma I read that success rates are so much higher for tumours 5cm and less so you stand a great chance.

Best of luck! x


#19



Debra said:

Also, sorry I forgot that I wanted to say, I also just started votrient a week ago. Would love to have someone to share that experience with too. hopefully, I wrote all this correctly! Deb.

Chelle86 said:

I have to say that you tell an amazing story! God Bless you! Keep believing. My largest tumor in the lung is around 14 cm. Ifos alone cut it about in half, but it's grown back now. Still, there is a lot happening out there right now. Look for the trial listed in Government trials under identifier # NCT02301039. They are recruiting right now in Pittsburgh, but although it may not be listed in the site, it is also in other select states as well. I was almost in, but my large tumors started to bleed and the risk was too great. There are some folks on here getting in. It is utilizing a single agent, pembrolizumab/pembro (MK-3475). This drug is being called a possible cure for cancer. Would love to be friends! Take care. Debbie.

Hello!

My story is quite similar to yours in some ways. I had recurrent spontaneous pneumothorax too, I then had a pleurodesis (the surgery to stick your lung to your chest wall - i had the talc procedure) Two years later when I was 24 and pregnant we found out I had a 17cm tumour in my chest wall where the pleurodesis surgery took place. At the time it was deemed inoperable but my chemo worked so well that the surgeon eventually decided to give it a go. I had doxorubicin and ifosfamide and it reduced the tumour size dramatically. I then had the remainder of the tumour and my entire right lung removed (without clear margins) followed by radiotherapy.

Then I enjoyed a couple of years of NED (no evidence of disease) before i had a local recurrence last year. It's on my chest wall again and part of my diaphragm. Unfortunately it's too widespread for surgery so I just had ifosfamide again (worked really well again - tumour is half the size.) Just giving my immune system a break now and trying a tablet called pazopanib (votrient).

So in my experience chemo worked amazingly.. as far as the port, i'm not sure. I had a hickman line so i had two big lines coming out my chest but i could just tuck them in my bra. Like you though, I was getting married four weeks in to my treatment so I wanted to wear a dress and stuff too. They agreed I could get my first treatment through a vein in my hand and have my hickman line put in after the wedding.. maybe you could do that? Luckily if prom is only 2 weeks into treatment you should still have your hair and be feeling ok too :) It's definitely important to still maintain a degree of normality, i know what you mean!

Anyway, I hope you feel good and have an amazing prom and the treatment works well for you and isn't too tough. Debra is so right about being picky about your port, don't be afraid to say if you don't think people are taking enough care with it, it's an easy route in for infection so make sure people are dealing with it properly. It is a life saver, avoids all sorts of needles and problems like veins collapsing etc. She's also right on about not letting anyone tell you how long you might have to live.. I was diagnosed as terminal in 2010 and ended up in remission.

You are young and strong.. You can do this. When I spent time researching sarcoma I read that success rates are so much higher for tumours 5cm and less so you stand a great chance.

Best of luck! x


#20

Hi Debra, I've heard of pembrolizumab, it certainly sounds promising. I live in Scotland though so cannot access trials in the states. If the pazopanib doesn't work I might have a look at what trials are on here. Fingers crossed for the pazopanib. One of my Oncologists other patients has been on it for two years with no new growth. That would be wonderful :) SO far my side effects have been very minimal, which is great. My hair is growing in pure white now but i'm not bothered about that at all. Beats having none! x