Fallopian tube girl on your uterine page
Comments
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Update...
Nothing is ever simple with me. Nothing.
So, I'm go in for staging Lymphadenectomy that should take 1 to 1 1/2 hrs. No. It took 5. I told anyone who would listen, including all I encountered the morning of my surgery, " I don't care what happens in there. I don't care what you find. You do the best you can. Clean it up and shut it down. Bladder, colon, whatever....do what you can, but I am not waking up with permanent bags hanging off my body. I'm NOT giving anyone permission to do that. Period." They all looked at me like I was crazy. Turns out I'm not crazy.
So, on August 5th when GYN did hysterectomy, he reported everything looked good. She's good to go. Not true. On the 20th he reported my CT was "Clean. The surgery got it all." Not true. The CT report read, "Nodular enhancing soft tissue near left vaginal cuff..." Since I'm not a doctor and I was told it was "clean," I dismissed. Turns out ONC wanted to find that tissue and remove.
So, ONC found endometriosis tissue that was cancerous on my colon and one little tumor on my bladder. It turns out GYN "assisted" this time and my husband was told he said repeatedly, "That wasn't there in August." So I ask ONC, " Do I have a second kind of cancer??? One that's fast growing? One that could create these spots in seven weeks?" He's says no...that GYN is good doctor and did a great job with hysterectomy, but not an ONC, so he didn't see it. Great. (That's sarcasm.)
So, in removing what was on my bladder, I ended up with a little tear, that they then repaired. I had to spend night in hospital, and am home with a catheter for a week. Not Happy. They SAY that it will be removed next week, but I can't believe anything they say. ONC swears I'm still "fixable." He said he spent all that time removing every little bit of cancer he could find and chemo would get anything else. He said omention looked good and he found nothing north of pelvis. Lymph nodes all looked normal. I asked, "So am I Stage 4 now?" He said "No!"
Oh....and for anyone wondering about the answer to my question as to how painful is Lymphadenectomy? Answer: Way worse than hysterectomy. But that's probably because of the bladder repair. Who knows. From below my rib cage to my pelvis I am swollen and have a lot of pain.
My ONC and I are going to have to have a serious discussion about truth-telling. I found myself lying there in hospital bed questioning nurses, "Do i still have a bladder???" That can't happen again. I haven't said anything before now because 1) He said he and GYN 'were friends," & 2) I expect in the doctor world there is considerable CYA going on for each other. But I have got to trust this ONC or none of this is going to work.
i can't do anything now but wait for post-op appointment next Thursday. They say I have to have imaging done, a cystogram, before they can remove catheter. I guess to make sure it's healed enough to support being full of urine.Thank goodness my husband is so wonderful and a great nurse. This is all so humiliating...carrying around the urine bag & him emptying it.
I'm sorry my attitude is not great today. It's just going to take some time to wrap my head around the new information and then move forward. And I've got to straighten out the lying business. A single lie creates a contagion of doubt. Got to fix that!
Good wishes to all!
Alicia
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Hoping you have better days aheadalicia2020 said:Update...
Nothing is ever simple with me. Nothing.
So, I'm go in for staging Lymphadenectomy that should take 1 to 1 1/2 hrs. No. It took 5. I told anyone who would listen, including all I encountered the morning of my surgery, " I don't care what happens in there. I don't care what you find. You do the best you can. Clean it up and shut it down. Bladder, colon, whatever....do what you can, but I am not waking up with permanent bags hanging off my body. I'm NOT giving anyone permission to do that. Period." They all looked at me like I was crazy. Turns out I'm not crazy.
So, on August 5th when GYN did hysterectomy, he reported everything looked good. She's good to go. Not true. On the 20th he reported my CT was "Clean. The surgery got it all." Not true. The CT report read, "Nodular enhancing soft tissue near left vaginal cuff..." Since I'm not a doctor and I was told it was "clean," I dismissed. Turns out ONC wanted to find that tissue and remove.
So, ONC found endometriosis tissue that was cancerous on my colon and one little tumor on my bladder. It turns out GYN "assisted" this time and my husband was told he said repeatedly, "That wasn't there in August." So I ask ONC, " Do I have a second kind of cancer??? One that's fast growing? One that could create these spots in seven weeks?" He's says no...that GYN is good doctor and did a great job with hysterectomy, but not an ONC, so he didn't see it. Great. (That's sarcasm.)
So, in removing what was on my bladder, I ended up with a little tear, that they then repaired. I had to spend night in hospital, and am home with a catheter for a week. Not Happy. They SAY that it will be removed next week, but I can't believe anything they say. ONC swears I'm still "fixable." He said he spent all that time removing every little bit of cancer he could find and chemo would get anything else. He said omention looked good and he found nothing north of pelvis. Lymph nodes all looked normal. I asked, "So am I Stage 4 now?" He said "No!"
Oh....and for anyone wondering about the answer to my question as to how painful is Lymphadenectomy? Answer: Way worse than hysterectomy. But that's probably because of the bladder repair. Who knows. From below my rib cage to my pelvis I am swollen and have a lot of pain.
My ONC and I are going to have to have a serious discussion about truth-telling. I found myself lying there in hospital bed questioning nurses, "Do i still have a bladder???" That can't happen again. I haven't said anything before now because 1) He said he and GYN 'were friends," & 2) I expect in the doctor world there is considerable CYA going on for each other. But I have got to trust this ONC or none of this is going to work.
i can't do anything now but wait for post-op appointment next Thursday. They say I have to have imaging done, a cystogram, before they can remove catheter. I guess to make sure it's healed enough to support being full of urine.Thank goodness my husband is so wonderful and a great nurse. This is all so humiliating...carrying around the urine bag & him emptying it.
I'm sorry my attitude is not great today. It's just going to take some time to wrap my head around the new information and then move forward. And I've got to straighten out the lying business. A single lie creates a contagion of doubt. Got to fix that!
Good wishes to all!
Alicia
Oh Alicia, I'm so sorry that this latest surgery turned into such a bad experience. I know that other women here have had to keep a catheter for a longer period after their surgeries. Hopefully they'll read this and share their experience. How fortunate that your husband is so helpful during this difficult time.
Waiting for the pathology report on what the doctor removed during surgery is always an anxious time. I hope that you can get some straight answers at your post-op appointment and a clear explanation of the next steps. I can understand how frustrating it must be not to have all the information you need right now.
In the meantime, try to rest as much as you can, although I know that is difficult when you're in pain. And come back to update us or just to vent when you need to. We're here for you.
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4 weeks with catheter
It's understandable to be upset with all that you are going through, especially with unexpected issues come up and have to be dealt with, but I think your situation is not all that unusual. In order to cope with the shock of a cancer diagnosis and what it means, we are all a bit hungry for information and have a hard time being patient with the process of learning what needs to be learned before there can be certainty.
I think our doctors would prefer to not tell us much until after they have our final pathology from surgery and a treatment plan in place, but we push them to give us an idea of what we are in for so that we can mentally prepare ourselves and then want to hold them to anything they tell us like it's written in stone. Medicine is far from an exact science, so I wouldn't consider it lying when things like what happens during surgery or changes to staging occur between original estimates and final results. Getting from diagnosis, through surgery and recovery, to a treatment plan is a process involving tweeking along the way. It takes patience and understanding, but you are getting closer. Getting a final treatment plan should be a big relief.
Surgeons never operate alone, so having the doctor who did the original surgery assist him was probably very helpful and in your best interest.
For now, focus on your recovery. The catheter will help to make sure you don't overdo activities at home. I had a catheter and drainage tube to cope with at home for four weeks, so I can appreciate how not fun it is, especially for sleeping. Don't feel humiliated getting help you need from your husband because I'm sure he sees it as a way he can show his love and feel less helpless about what you are going through. Our spouses go through cancer right along with us, so it's important for you to take care of each other as you go along and let your loved ones help you.
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Catheteralicia2020 said:Update...
Nothing is ever simple with me. Nothing.
So, I'm go in for staging Lymphadenectomy that should take 1 to 1 1/2 hrs. No. It took 5. I told anyone who would listen, including all I encountered the morning of my surgery, " I don't care what happens in there. I don't care what you find. You do the best you can. Clean it up and shut it down. Bladder, colon, whatever....do what you can, but I am not waking up with permanent bags hanging off my body. I'm NOT giving anyone permission to do that. Period." They all looked at me like I was crazy. Turns out I'm not crazy.
So, on August 5th when GYN did hysterectomy, he reported everything looked good. She's good to go. Not true. On the 20th he reported my CT was "Clean. The surgery got it all." Not true. The CT report read, "Nodular enhancing soft tissue near left vaginal cuff..." Since I'm not a doctor and I was told it was "clean," I dismissed. Turns out ONC wanted to find that tissue and remove.
So, ONC found endometriosis tissue that was cancerous on my colon and one little tumor on my bladder. It turns out GYN "assisted" this time and my husband was told he said repeatedly, "That wasn't there in August." So I ask ONC, " Do I have a second kind of cancer??? One that's fast growing? One that could create these spots in seven weeks?" He's says no...that GYN is good doctor and did a great job with hysterectomy, but not an ONC, so he didn't see it. Great. (That's sarcasm.)
So, in removing what was on my bladder, I ended up with a little tear, that they then repaired. I had to spend night in hospital, and am home with a catheter for a week. Not Happy. They SAY that it will be removed next week, but I can't believe anything they say. ONC swears I'm still "fixable." He said he spent all that time removing every little bit of cancer he could find and chemo would get anything else. He said omention looked good and he found nothing north of pelvis. Lymph nodes all looked normal. I asked, "So am I Stage 4 now?" He said "No!"
Oh....and for anyone wondering about the answer to my question as to how painful is Lymphadenectomy? Answer: Way worse than hysterectomy. But that's probably because of the bladder repair. Who knows. From below my rib cage to my pelvis I am swollen and have a lot of pain.
My ONC and I are going to have to have a serious discussion about truth-telling. I found myself lying there in hospital bed questioning nurses, "Do i still have a bladder???" That can't happen again. I haven't said anything before now because 1) He said he and GYN 'were friends," & 2) I expect in the doctor world there is considerable CYA going on for each other. But I have got to trust this ONC or none of this is going to work.
i can't do anything now but wait for post-op appointment next Thursday. They say I have to have imaging done, a cystogram, before they can remove catheter. I guess to make sure it's healed enough to support being full of urine.Thank goodness my husband is so wonderful and a great nurse. This is all so humiliating...carrying around the urine bag & him emptying it.
I'm sorry my attitude is not great today. It's just going to take some time to wrap my head around the new information and then move forward. And I've got to straighten out the lying business. A single lie creates a contagion of doubt. Got to fix that!
Good wishes to all!
Alicia
Hello Alicia:
So sorry you have to go through this. I know you feel the catheter is a pain but you need it in to let the bladder heal. I had a catheter in for over a week because of a bladder knick too. You would be surprised on how many people have urine bags or colostomies and you wouldn't even know it. I know you feel that this is a lot to take in at this time. Also, I went through many doctors. After we learned that if its not going right or you don't have a good rapor with the doctors, you may want to switch, if you are able too.
Its good you have good support with your husband. Wishing you all the best.
Kathy
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Thx, cmb, Kathy, & MAbound
Thank you so much for your kind words & support. It's wonderful to know I'm not alone and y'all are there for me. I'll get my head wrapped around this & be much better, but it's going to take a few days. I've read your stories & I know how much you've been through. You are all very brave and I aspire to be like you! I'll get there with time.
I was glad to know GYN assisted. If nothing else I think he could stand to learn a few things & maybe the next girl will benefit from my experience. He lied by omission....knew much more than he disclosed, so that when I got my hands on the path reports I knew what he had neglected to tell me.
And bless my husband's heart...they left him in that waiting room for 5 hours with no communication as to what was occurring. I hope that doesn't happen again. You're right that by helping me it makes him feel like he's able to DO something. My sister has always had little endearing nicknames for him. After his performance during my heart surgery & recovery, he became known as "Saint Edward." And he IS that! I have lots of support from family & friends, too. I'm so lucky & grateful for it.
I know I'll feel better when we get the cath out Thursday and hopefully pathology reports are also available. Then we can move forward! And thanks for reminding me it's not an exact science & I need to be more patient with the "practice" of medicine!
xo,
Alicia
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Not much news....
Hi, y'all
I had my post-op appointment yesterday afternoon & unfortunately, not much news to tell.
They did remove the catheter, thank goodness. Cystogram revealed perfect bladder with smooth edges and no leaks. We only know this because we saw for ourselves on screen and radiologist told us.
Young nurse said original pathology report has been sent for a second opinion (I can assume to someone at MD Anderson, although I didn't bother to ask). And it will be two more weeks until I have appointment to hear that report. I'm learning that there's no urgency in cancer. Very disappointing, but expected. She explained they needed more information so "they could give me the best treatment possible."
I cried and was upset, explaining that everything for the past week was painful, difficult, and that I had absolutely no sense of control of my circumstances, which was a huge part of my misery. Instead of reassuring me that things would improve, she said I needed to "get used to that" because for a long time in the future I will have no control over anything. For a 20-something year-old to say that so flippantly to a 65 year old, smart, capable, independent woman seemed absolutely outrageous to me, but I let it go.
I hope you ladies are having a good week.
Alicia
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Ugh!alicia2020 said:Not much news....
Hi, y'all
I had my post-op appointment yesterday afternoon & unfortunately, not much news to tell.
They did remove the catheter, thank goodness. Cystogram revealed perfect bladder with smooth edges and no leaks. We only know this because we saw for ourselves on screen and radiologist told us.
Young nurse said original pathology report has been sent for a second opinion (I can assume to someone at MD Anderson, although I didn't bother to ask). And it will be two more weeks until I have appointment to hear that report. I'm learning that there's no urgency in cancer. Very disappointing, but expected. She explained they needed more information so "they could give me the best treatment possible."
I cried and was upset, explaining that everything for the past week was painful, difficult, and that I had absolutely no sense of control of my circumstances, which was a huge part of my misery. Instead of reassuring me that things would improve, she said I needed to "get used to that" because for a long time in the future I will have no control over anything. For a 20-something year-old to say that so flippantly to a 65 year old, smart, capable, independent woman seemed absolutely outrageous to me, but I let it go.
I hope you ladies are having a good week.
Alicia
Im so sorry Alicia that she spoke to you that way. You will have people like that. There are ways of saying something without making you feel uncomfortable. She should have been more compassionate to your circumstances. I can tell you a lot of things, but right now I think you need some space to gather your thoughts. Don't let this person get to you.
(((HUGS)))
Kathy
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Thank you, Kathy
I know I'm not in a good place emotionally, but part of it has been that I'm not very comfortable with that ONC or his office. He said something very inappropriate to me in our first meeting....a remark which I don't even want to repeat here, and his nurse has this abundantly cheerful attitude which I also find inappropriat. I get it that positivity is vitally important, but being overly cheereful seems dismissive of the seriousness of a cancer diagnosis and treatment.
i have not changed doctors because I felt like I couldn't afford the wait.....I couldn't afford for my surgery to be further postponed. After I get my pathology reports, I may need to change.
i am very interested in all the advice that you can offer. I have wondered if many of the ladies here have experienced that feeling of having no control. Ladies, do you feel like you have any control? Do you feel like anyone is listening and/or taking your wishes into consideration?
Hugs back!
Alicia
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alicia, I am sorry I had
alicia, I am sorry I had little connectivity that week in Sept when you were posting info, but I did see the wonderful ladies here were available to support.
Are you working with a gynecologic oncologist? I see GYN and ONC, but maybe you can ensure a second gynecologic oncologist is brought in. These are always tough conversations but if I could suggest by asking, "Can you please tell me who the gynecologic oncologist is and if I would be able to talk with them as well?"
What you wrote about being uncomfortable about something said should never had happened. Since we are talking about your life, and you are putting your life in their hands, I would want to be comfortable with them. Personally, I know other patients who loved my radiologist but I didn't care for him. When offered to go to him during follow-ups I said NO.
Our physicians and nurses have to listen to us. If not you have to be your own advocate, which can be difficult, but it is your life. Maybe you can look for another gyn onc in your area and reach out to their office? I know it doesn't seem fair that you have to fight a disease and push for your answers.
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Felt the samealicia2020 said:Thank you, Kathy
I know I'm not in a good place emotionally, but part of it has been that I'm not very comfortable with that ONC or his office. He said something very inappropriate to me in our first meeting....a remark which I don't even want to repeat here, and his nurse has this abundantly cheerful attitude which I also find inappropriat. I get it that positivity is vitally important, but being overly cheereful seems dismissive of the seriousness of a cancer diagnosis and treatment.
i have not changed doctors because I felt like I couldn't afford the wait.....I couldn't afford for my surgery to be further postponed. After I get my pathology reports, I may need to change.
i am very interested in all the advice that you can offer. I have wondered if many of the ladies here have experienced that feeling of having no control. Ladies, do you feel like you have any control? Do you feel like anyone is listening and/or taking your wishes into consideration?
Hugs back!
Alicia
Alicia:
I have changed many doctors over the years. I said the one doctor I was stuck with for awhile I felt that all I was was a Bar Code. You go in, they scan you, and then just give you rote answers. They don't look at you as a person. You can go to two or three different doctors who can basically give you the same advice but I rather go with the doctor that has compassion and gives you the time that you deserve.
I also had one doctor who I had to travel 3 hours to see. I waited over 2 hours to see him. He comes in and shows me his screen and indicates how far behind he was. Then he rushed me in and out. Last time I saw that doctor.
Hang in there Alicia. Vent here on this site. We are listening.
All my best,
Kathay
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The waiting period
As Kaleena and NoTime wrote, you do need to be confident with the medical professionals working with you while dealing with cancer. So if you continue to find your current team unsatisfactory, you may need to make a change.
Having said that, however, the gynecological oncologist who did my surgery and I still see for follow-up is not the most personable. During my first appointment with him he said that my type of cancer was a "life-ender" if not treated aggressively.
Now I'm pretty pragmatic and appreciated his frankness. But I can certainly understand that another woman might find this comment offensive or disturbing. However, he did a good job with my surgery and worked with the medical and radiation oncologist throughout my treatment period.
I was lucky to have a very good nurse in the gynecological oncologist office who had personally experienced cancer years earlier. I really liked both her and the medical oncology nurse who delivered my outpatient chemo. The medical oncologist and radiation oncologists were both fine.
The time period between initial diagnosis and the start of any post-surgery treatment is stressful for most people. It's unfortunate that this period has been extended for you, but I'm glad they've sent for a 2nd opinion on pathology so you'll know what you're dealing with and the treatment plan can be customized for you. Other women have also had a slow start to post-surgery treatment for a variety of reasons.
Personally, I was quite busy with work and helping my sister move to a condo during the weeks after diagnosis and before I had surgery, so I was able to focus on something other than cancer. The five weeks after surgery until I was able to start chemo was a more worrisome period.
But the good news is that you were able to have the catheter removed. So that's definitely a positive.
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Thank you, dear ladies!
Dear K, NTFC & cmb...and others!
Your support means the world to me!
The ONC is a gynecological oncologist. He does have a very good reputation in the Houston area. The inappropriate remark didn't have to do with my diagnoasis or prognosis, but he was trying to be funny...it was a sexual remark...and completely insensitive and unappreciated. Seriously...it was so unacceptable I don't want to tell here...it was that bad. He apparently is a little quirky and says off the wall kinds of things, also. Like in describing how healthy my liver looked he said, "It looked good enough to eat." Apparently, his "filter" needs some work. I can live with it, as long as he can be best at trying to save my life.
As to that nurse.....I've decided while I'd say she considers herself a cheerleader, she's actually more like a bully. And I've never responded well to people who think they can dictate how I feel. I think I will try to explain to her next time that while positivity is important it is not heathy to disallow a patient's negative emotions. A person in these circumstances has a whole range of emotions, and they must be allowed to voice those to be able to process them and then move forward.
I'm still in a lot of pain....but it's only been 11 days since my surgery, so I must be patient. At least without dragging that catheter bag around I feel a little more human! The waiting for chemotherapy is hard, but I know I have to heal before we start it.
Thanks for listening, Sweet Ladies!
Again, all advice is welcome!xo,
Alicia
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Off-kilter responses
Oh, your doctor's "sense of humor" would be a turn off for me too. I'm not fond of people who tell "jokes" at the best of times (although I like people who are naturally funny and a bit snarky in their observations – but at the appropriate time and place – not during a cancer appointment). That behavior alone might be enough to have me switch to another doctor.
My one sister is the "always positive" person who was frankly wearing on me when I was first diagnosed and throughout treatment. Fortunately, my other sister and close friends were supportive without that annoying "positive thinking" mantra. Some people are naturally inclined to be optimistic while others are more pessimistic. I personally like to prepare for the worst while hoping for the best. But each response is valid if it's what's natural for that person.
So I agree with your intention to talk to the nurse about how you are feeling. It may not change her behavior (my sister didn't change hers despite my comments), but I'm sure you'd feel better if you said something.
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You might get a laugh at myalicia2020 said:Thank you, dear ladies!
Dear K, NTFC & cmb...and others!
Your support means the world to me!
The ONC is a gynecological oncologist. He does have a very good reputation in the Houston area. The inappropriate remark didn't have to do with my diagnoasis or prognosis, but he was trying to be funny...it was a sexual remark...and completely insensitive and unappreciated. Seriously...it was so unacceptable I don't want to tell here...it was that bad. He apparently is a little quirky and says off the wall kinds of things, also. Like in describing how healthy my liver looked he said, "It looked good enough to eat." Apparently, his "filter" needs some work. I can live with it, as long as he can be best at trying to save my life.
As to that nurse.....I've decided while I'd say she considers herself a cheerleader, she's actually more like a bully. And I've never responded well to people who think they can dictate how I feel. I think I will try to explain to her next time that while positivity is important it is not heathy to disallow a patient's negative emotions. A person in these circumstances has a whole range of emotions, and they must be allowed to voice those to be able to process them and then move forward.
I'm still in a lot of pain....but it's only been 11 days since my surgery, so I must be patient. At least without dragging that catheter bag around I feel a little more human! The waiting for chemotherapy is hard, but I know I have to heal before we start it.
Thanks for listening, Sweet Ladies!
Again, all advice is welcome!xo,
Alicia
You might get a laugh at my inappropriate remarks story. After completing rads, I had my final follow up with my young, male radiation oncologist. He did a pelvic exam, and while I'm laying there in stirrups and he's way up in my business, he's saying, "Beautiful! You look fantastic!" ... Um, thanks? Lol - I wasn't offended and thought it was pretty funny ... but really, pretty awkward!
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Hahahahaha!
You can't beat that, LisaPizza.....being told your parts are beautiful!!! ?
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Thanks for the laugh tonight
Thanks for the laugh tonight LisaPizza! That really was funny.
Love and Hugs,
Cindi
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Alicia, this is just my
Alicia, this is just my opinion here. I think a sexual comment in an attempt at humor from a GYN to a patient is extremely unprofessional. I would call him on it and ask for a referral for another Gyn/Onc. Houston has many top doctors, he isn't the only one. I am so sorry this has happened to you. I am glad you got the cath out and your bladder is A-OK!
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Thx, Jan!
I appreciate all you ladies so much!
Right now I'm just in a holding pattern waiting to finally get my pathology reports next Thursday. I'm going to hear what he has to say....make sure I have hard copies of my reports in my hot little hands...and then I may decide to go elsewhere. Geographicaly, I am in one of the best places in the world for cancer treatment...thank goodness! One of my friends has a female GYN/ONC in The Woodlands, and I may decide/need to go there.
i'm a funny girl with a great sense of humor, but I've always said about myself, "I NEVER laugh about money!!"
I guess my new saying will be, "I NEVER laugh about money or cancer!"
I'll let you know what happens!?, A
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Welcome
Hi,
I know much has happened since your original post, but I just needed to make a comment. I also am being treated for endometrial cancer. I had two recurrences.
The reason I am responding to this post is that I am on Ibrance and an aromatase inhibitor as maintenance therapy. It is working for me, but it is not prescribed for this cancer in the U.S. It is prescribed for metastatic breast cancer - ER+ and PR+ and HER2-. That is the same as my cancer. I have to subscribe to metastatic breast cancer boards to find people receiving the same treatment as me. I am not treated as an outsider on that board. So, we do what we need to do to get support. I am glad that you joined our group and are hopefully getting the support you need.
0
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