Neck tumor
My neck tumor is growing by the day! I can hardly believe my own eyes! It has a slight burning sensation, but is not really painful. It's just so rock hard, and on occasion I accidentally knock it with my hand or arm. My doctor said he wanted to wait to see what the Etoposide does to it, but I don't agree. I'm suppose to see his PA on the 28th, but I don't think I can wait that long to let him know that I would like to start radiation on it now. In another month, at this rate, it could be the size of a softball. Wouldn't that make it more difficult to get rid of with radiation? So far, I can camouflauge it with collars and scarfs, but it just looks so awful. It's a constant source of depression because I can't get my mind off of the cancer, not even for a few minutes. You know, we all have the cancer growing inside us, and sometimes it is easy to forget about it for awhile, but with it staring you right in the face.....protruding and growing......there isn't any getting away from it. It's weird actually looking up close at this horrific monster that wants to take my life I've only taken three doses of the oral Etoposide so far, and I guess I shouldn't expect any positive change on the tumor this soon, right? But, it's growing, that's even worse!!!! Also, I'm worried about it getting tangled around some very important blood vessels, etc. Another concern about the radiation is with the salivary glands and taste buds. That's another reason to get the radiation started sooner I think. So, ladies, should I absolutely INSIST with my doctor, or should I let him stay in charge? I'm not feeling up to par with the Etoposide, but not lousy enough to complain. And, dear Bonnie, thanks so much for looking in your journal for your experience with Etoposide......it was encouraging. Now, if I just could be part of that 25% that it helps, on a clear day, some of you could probably hear me WHOOPING it up. haha
I'm wishing that all of you are doing well and getting a chance to "play" out in the sun this week-end. Lots of love and hugs, MM
Comments
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poor you!
I totally empathize with your situation. I can almost hear the panic in your voice. I know that head/neck cancer can be very disfiguring.
Did you mention previously lymphoma? A family friend had a huge lump on his neck that was lymphoma. He is doing wonderful now!!! Was it biposied? Have you researched on line what the tradtional course of treatment is for this type of tumor? I would relay my concerns to him. I would call him and tell him it is getting bigger and you are concerned. How many doses does he want to try?
Hang in there. I wish I could give you a hug!0 -
Lymphomanancy591 said:poor you!
I totally empathize with your situation. I can almost hear the panic in your voice. I know that head/neck cancer can be very disfiguring.
Did you mention previously lymphoma? A family friend had a huge lump on his neck that was lymphoma. He is doing wonderful now!!! Was it biposied? Have you researched on line what the tradtional course of treatment is for this type of tumor? I would relay my concerns to him. I would call him and tell him it is getting bigger and you are concerned. How many doses does he want to try?
Hang in there. I wish I could give you a hug!
Nancy, last week my doctor told me that he thought the tumor was the ovarian cancer and not lymphoma. I'm taking that as good news. I don't know what caused him to change his mind, except for maybe reviewing the cat scan more closely and speaking with other oncologists. But, I know for sure that I have never had growth this rapid ever before. Originally, my doctor had said that we might need to biopsy it, but made no mention of that last Monday. I was happy to hear that it could be radiated. I don't know the repercussions from the radiation, but don't know what else to do. Thanks for both of your input. Lots of hugs,MM0 -
FYIMichaelaMarie said:Lymphoma
Nancy, last week my doctor told me that he thought the tumor was the ovarian cancer and not lymphoma. I'm taking that as good news. I don't know what caused him to change his mind, except for maybe reviewing the cat scan more closely and speaking with other oncologists. But, I know for sure that I have never had growth this rapid ever before. Originally, my doctor had said that we might need to biopsy it, but made no mention of that last Monday. I was happy to hear that it could be radiated. I don't know the repercussions from the radiation, but don't know what else to do. Thanks for both of your input. Lots of hugs,MM
My brother in law had radiation in his mouth for oral cancer and it was pretty rough. Be sure to ask if you should see a dentist first.
Good luck!0 -
Add me to the "secondkayandok said:Dear MM,
I think it is bad enough knowing your tumors are inside, but seeing on grow in front of your eyes must be very stressful!! I agree with Leesa, I would get a second opinion, which can be a huge hassle.
Praying for peace and wisdom for you,
kathleen:)
Add me to the "second opinion" chorus. I don't know about secondary OVCA, but my doctor told me that primary ovarian cancer tumors are fairly slow-growing. Will a biopsy tell you the kind of cancer, or just malignant/benign?
I can only imagine how you must feel. After my diagnosis, I could feel/see my ascites getting worse by the day and it was enough to put me in panic mode.
My brother had radiation for cancer of the throat. He tolerated it quite well....and it was totally successful.
Carlene0 -
slow growing?Hissy_Fitz said:Add me to the "second
Add me to the "second opinion" chorus. I don't know about secondary OVCA, but my doctor told me that primary ovarian cancer tumors are fairly slow-growing. Will a biopsy tell you the kind of cancer, or just malignant/benign?
I can only imagine how you must feel. After my diagnosis, I could feel/see my ascites getting worse by the day and it was enough to put me in panic mode.
My brother had radiation for cancer of the throat. He tolerated it quite well....and it was totally successful.
Carlene
Not so sure that my ovca was slow growing. I had my annual gyn exam in Jan. 08 and a transvag u/s Feb '08. A small cyst was seen at that time. Sept '08 I am stage IV. 7 months had passed.0 -
The tumor on my left ovarynancy591 said:slow growing?
Not so sure that my ovca was slow growing. I had my annual gyn exam in Jan. 08 and a transvag u/s Feb '08. A small cyst was seen at that time. Sept '08 I am stage IV. 7 months had passed.
The tumor on my left ovary was softball-size when it was discovered. My doctor said it had probably been growing for the better part of a year. I have thought ever since then, "what if".......what if I had gone in sooner; what if I had paid more attention to my little (minimal, actually) symptoms.0 -
Carlene, stop thinking "whatHissy_Fitz said:The tumor on my left ovary
The tumor on my left ovary was softball-size when it was discovered. My doctor said it had probably been growing for the better part of a year. I have thought ever since then, "what if".......what if I had gone in sooner; what if I had paid more attention to my little (minimal, actually) symptoms.
Carlene, stop thinking "what if." I had a hysteroscopy/d & c in December 08 for abnormal bleeding--doc said both ovaries were normal (with transvag ultrasound). Then I had my regular gyn check up in July 09, everything still normal. December 26th started feeling those gall bladder symptoms and January 18th I'm in OVCA world with Stage IIIC.
Michaela, I know you just want it gone, but seriously honey, this is worth the hassle of a second opinion. Especially since it hasn't been biopsied and you don't know for sure that it's the ovarian cancer.
I'm sorry honey. Sending you hugs and prayers!
Leesa0 -
Hugs My Friend
Dear MM,
I know I shared this earlier, about my friend who has very large ovarian tumors in her neck. She first had a golf ball tumor about 4 years ago, it drove her crazy seeing the cancer grow in front of her eyes(I think it would for all of us). Anyway she did the NK Cell transplant after me and the huge doses of chemo did finally shrink it back but not for long and it came back even larger. She finally got someone who did radiation on it and back it came and it is for sure ovarian cancer. Now she has two tumors on her neck ~ I know ~ what is positive in all I am telling you ~ right?
Here is the positive side on it, it has been 4+ years now and she is still here. Whether the cancer is on the inside or on the outside it does not determin how long we have. I know looking in the mirror can be an irratating reminder of our destiny, and so now I am sending buckets and buckets of positive energy and thoughts. I pray you can look in the mirror and say "Cancer you may think popping out you have scared me ~ But you can not take away the fact that wherever you show up I will continue to live my life to the fullest" " You can not take away the peace that God is continuing to carry me through" "You can not take away my J♥Y in life"
I pray this has been helpful and hope it doesn't sound like I am making light of the matter ~ I am reminded each day of how the cancer was trying to take my life away, invading my bowels and rectum ~ but here we are. You and I have been on this journey for a long time, longer than the Drs ever thought we would. We have been through numerous surgeries and we well make it through this. Take my hand my friend, I am here for you, and we, with God's help, well continue to live life to the fullest together, we can continue to change the statistics of longevity with ovarian cancer.
Prayers ♥ Hugs Bonnie0 -
DEAR MM. . .
Well, my friend, I know we usually communicate via email, but since you have posted such an urgent note here, I know you'll be watching for responses.
I agree with everyone - time for a second opinion, or at least to pin your PA or doctor down once and for all and ask 'why no biopsy yet'? What are they waiting for? Is it dangerous to biopsy? And, as you mentioned, did he possibly see something on the scan that confirms his course of action? Either way, you need some solid answers. I don't think it's appropriate to leave a patient this much in the dark. Most of us don't like to be kept 'in the dark'.
Sending love, hugs and prayers to you, MM. Hope to hear this week that you have some positive feedback from someone, and that a burden has been lifted for you.
(((HUGS)))
Monika0 -
This comment has been removed by the ModeratorHissy_Fitz said:The tumor on my left ovary
The tumor on my left ovary was softball-size when it was discovered. My doctor said it had probably been growing for the better part of a year. I have thought ever since then, "what if".......what if I had gone in sooner; what if I had paid more attention to my little (minimal, actually) symptoms.0 -
How do I say thank you?unknown said:This comment has been removed by the Moderator
to all of you wonderful girls! As always, Bonnie, your words are inspirational to me! THANK YOU SO MUCH! I know that you are not feeling well, and yet you took the time to sit at the computer and write me such words of encouragement! I will definitely insist on a biopsy, perhaps via needle? Everyone here seems to agree that I also need a second opinion. I don't really know how to start that process, any tips? And, what about my insurance company......will they pay for me to go to someone else? Also, I'm not doing as well on the Etoposide that I thought after the first dose. I took my fourth pills last night and fairly quickly felt a little sick, plus abdominal pains much like severe gas pains. I took a pain pill and Ativan last night when I went to bed and was able to sleep. My little granddaughter and daughter were here for three nights, but I felt badly that I was so tired. But, I did manage to play dolls some, although not as much as my granddaughter would have liked. ha She was just a couple of weeks old when I was diagnosed, so she has hardly ever been around me when I wasn't on chemo (6 yrs), but yet I am so very grateful that I have had all of this time with her. Yes, I know Bonnie and I have both beat the odds (my doctor gave me only 1-2 years), so even with all the chemo and surgeries, we are still fighting and still keeping hope alive, all with God's help for sure! I so appreciate all the help and love that you girls are sending my way.....it just helps so much! I will definitely keep you updated. With hope,love and prayers, MM0 -
Michaela..............MichaelaMarie said:How do I say thank you?
to all of you wonderful girls! As always, Bonnie, your words are inspirational to me! THANK YOU SO MUCH! I know that you are not feeling well, and yet you took the time to sit at the computer and write me such words of encouragement! I will definitely insist on a biopsy, perhaps via needle? Everyone here seems to agree that I also need a second opinion. I don't really know how to start that process, any tips? And, what about my insurance company......will they pay for me to go to someone else? Also, I'm not doing as well on the Etoposide that I thought after the first dose. I took my fourth pills last night and fairly quickly felt a little sick, plus abdominal pains much like severe gas pains. I took a pain pill and Ativan last night when I went to bed and was able to sleep. My little granddaughter and daughter were here for three nights, but I felt badly that I was so tired. But, I did manage to play dolls some, although not as much as my granddaughter would have liked. ha She was just a couple of weeks old when I was diagnosed, so she has hardly ever been around me when I wasn't on chemo (6 yrs), but yet I am so very grateful that I have had all of this time with her. Yes, I know Bonnie and I have both beat the odds (my doctor gave me only 1-2 years), so even with all the chemo and surgeries, we are still fighting and still keeping hope alive, all with God's help for sure! I so appreciate all the help and love that you girls are sending my way.....it just helps so much! I will definitely keep you updated. With hope,love and prayers, MM
Are you still seeing the doctor who predicted you would be dead within two years? That kind of gravedigger-ish medicine just makes me crazy.
I know what the odds are; I know what the stats say. I am not a dummy, nor am I in denial, but when a patient is just starting treatment, or even when she has had a recurrence (or more than one), unless her organs have started shutting down and she is clearly, clinically at death's door, no one knows who the "lucky" ones will be - the ones who are still alive ten years down the road.
My friend's next-door neighbor (diagnosed 11 years ago at stage 3c) has had many recurrences, but she's still alive (works full-time, too). Her OVCA has simply become a chronic condition to her, like Diabetes or kidney disease. About every six months, on average, she has to go back into treatment. So far, so good. Her doctor (my doctor, too) is her biggest cheerleader. He NEVER tells her how lucky she is to be alive. He NEVER tells her that her luck might be running out.
If I cross an absolute line of no return, then of course I want to know that I have only a few weeks to live. But until then, I will go on hoping that I will be one of the ones who lives for a long, long time with this wretched disease. And I want my doctor to feel the same way. Or at least pretend that he does.
Carlene0 -
Michaela,MichaelaMarie said:How do I say thank you?
to all of you wonderful girls! As always, Bonnie, your words are inspirational to me! THANK YOU SO MUCH! I know that you are not feeling well, and yet you took the time to sit at the computer and write me such words of encouragement! I will definitely insist on a biopsy, perhaps via needle? Everyone here seems to agree that I also need a second opinion. I don't really know how to start that process, any tips? And, what about my insurance company......will they pay for me to go to someone else? Also, I'm not doing as well on the Etoposide that I thought after the first dose. I took my fourth pills last night and fairly quickly felt a little sick, plus abdominal pains much like severe gas pains. I took a pain pill and Ativan last night when I went to bed and was able to sleep. My little granddaughter and daughter were here for three nights, but I felt badly that I was so tired. But, I did manage to play dolls some, although not as much as my granddaughter would have liked. ha She was just a couple of weeks old when I was diagnosed, so she has hardly ever been around me when I wasn't on chemo (6 yrs), but yet I am so very grateful that I have had all of this time with her. Yes, I know Bonnie and I have both beat the odds (my doctor gave me only 1-2 years), so even with all the chemo and surgeries, we are still fighting and still keeping hope alive, all with God's help for sure! I so appreciate all the help and love that you girls are sending my way.....it just helps so much! I will definitely keep you updated. With hope,love and prayers, MM
I believe most
Michaela,
I believe most insurance companies will cover a second opinion. You can probably request a referral from your primary care, or your gyn will give you one. Your doctor shouldn't be offended, in fact, every doctor that I have seen so far has asked me if I wanted to proceed with treatment or get a second opinion. If you aren't sure who to see, you might want to ask your chemo nurses (they probably know all the really good docs and who to avoid).
Hugs and Prayers heading your way!
Leesa0 -
Good advise, Leesa~leesag said:Michaela,
I believe most
Michaela,
I believe most insurance companies will cover a second opinion. You can probably request a referral from your primary care, or your gyn will give you one. Your doctor shouldn't be offended, in fact, every doctor that I have seen so far has asked me if I wanted to proceed with treatment or get a second opinion. If you aren't sure who to see, you might want to ask your chemo nurses (they probably know all the really good docs and who to avoid).
Hugs and Prayers heading your way!
Leesa
Talking to your chemo nurse is a great idea! They know so much, and are much more accessible than a doctor, it seems. I would try calling your Infusion Nurse. She can
give you advice, and even recommend another good oncologist.
Your doctor seems to be clearly dragging his feet on something urgently important.
This happened to me last summer, when my abdomen was filling with fluid, and I was dehydrated, but my doctor refused me fluids!! Even after I had labs done. I then called my primary, who told me to go to an E.R. I went to Urgent Care, and the doctor there just shook her head and ordered 2 large bags of Saline, along with some Potassium & I believe magnesium. She couldn't believe that my oncologist didn't order fluids. (and it's not like I was asking for morphine!).
I love my doctor, but there are times when he isn't listening to me. Sometimes, if I had a choice, I would find another. But the closest other Gyn/Onc is over 4 hours away from me; so I don't have that choice right now.
I have discovered that we MUST be our own advocate. Don't wait for that doctor if there's another one who can see you sooner. Get on the phone 1st thing tomorrow morning. You won't rest until you find out what's going on.
You're in my prayers, sweetie. Best of luck, and take some deep breaths :-)
Love,
~Susan xoxo0
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