I have two type of cancer and this one is left!!!

lisah · Regular Joined: 02 May 2005 Posts: 15

Hi

I've posted here before, thinking I had lymphoma only to be told I had end stage kidney cancer with a 20- 30% chance of surviving.

Anyway, since then - I've been in hospital for major surgery. I had my left kdney removed, part of my bowel and many lymph nodes. It was hell but I've been home 2 days now and I'm feeling better.

I was orginally diagnosed with grade4 kidney cancer and given a few years. However, the surgeon has told me that the kidney cancer had not spread. I have in fact got two kinds of cancer at once; very rare! My kidney cancer had not spread, so now removed. I have in fact got Lymphoma in my bowel (now removed) and lymph nodes (still left). So, Maybe (not confirmed by docs yet...) my lymphoma is treatable and therefore cureable; thats what I'm hoping anyway. I'm waiting to see exactely what type of lymphoma I have.

Soooooo, I'm not out of the woods. I still have mountains to climb and I still don't know exactely where I stand but I still have hope!!! and I won't let it go.

I don't know exactely how bad, what type of lymphoma or what the treatment might be but I'm thinking my chances have increased from a few years to cureable - am I right??????????

I will NOT give up fighting and really wanted to get some feedback (perhaps from Leo who answered one of my posts on kidney cancer) to see what he thinks.

Stay strong all

Lisa xx

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Lisa

Lymphomas are very treatable diseases. Some type can be cured, while others can be controlled for many years. Also, kidney cancer can be cured if everything is removed and there are no signs of disease elsewhere. Have you asked your doctors about this ?

regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

lisah · Regular Joined: 02 May 2005 Posts: 15

Hi Leo

Thanks for your reply. I have an appointment with Oncology on Wednesday to tell me what kind of lymphoma and have and the treatment (very scared about the treatment - but I'm telling myself it can't be as bad as surgery right..?)

My surgeon (the kidney) specialist gave me the impression that the kidney cancer had been removed with my kidney and all that was left was the lymphoma. The tumour in my bowel was lymphoma (now removed) and in my lymph nodes is lymphoma. I wish I'd have asked him more but I was so shell shocked and so pleased that it was lymphoma and not kidney cancer that all the questions came to me afterwards.

I'm hoping and praying that I have a cureable kind of lymphoma!!! I'm very scared about everything at the moment!

Thanks for your reply

Lisa

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Lisa

Hopefully you will get your questions answered. Good luck with your treatment !

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

lisah · Regular Joined: 02 May 2005 Posts: 15

hi

i had my staples out tuesday; 47 in all and it didnt hurt one bit really, i didnt sleep all night because i was going to the hospital wednesday to find out what kind of lymphoma i have and what treatment i needed. it was either going to be cuerable or not cureable and i was going to get my chemo appointments.(which i was sooooooooooooooooooooooooooooooooooooooo scared about. the operation was enough to go through and now i had to face this not being fully recovered form the op.)

so, got to the chemo outpatients for 10.30am as my appointment was at 10.45am. to say i was scared was an understatement. now i will go through anything to live and ive told myself if i can live then i will get through chemo, no matter how tough. but at 1.30pm i was still sitting there waiting as the clinic was sooooooo behind and i felt so ill i was going to just walk out. i was so scared.

anyway, at 1.45pm i went in. we all went in.(mum, sis and cousin!) i sat down, the doc said he was the leading expert on my type of lymphoma in the country and he would tell it me straight, no lies, no sugar coating. so he said my lymphoma was not cureable and he was not going to treat me. well, for 10 mins or so i went into a daze and didnt hear a word. i started crying. he was telling me what lymphoma is, how the cells react, drawing pictures etc. to cut it short he basically said that treating my kind of lymphoma - fallicular, enflames it and makes it worse, so, from his expert point of view he doesnt like treating it unless something occurs. that 10 years ago it was possible for people to live 15 years with this but now, 10 years later that he can keep 55 year olds alive 20 years. so, with me, he's aiming for keeping me alive for 20 - 30 years. i might live til im 75 and never need no treatment ever, then again every 7 years or so something might happen and i might need treatment. i asked what kind of things and he gave me this example: he said a woman of my age was diagnosed and nothing went wrong for 7 years. she got pregnant, got a lump under her arm and her lymph nodes were weeping.so, he gave he steroid tablets, it cured it and he expects her to be ok for another 7 years or so. what might go wrong goes from simple to worse and the treatments go from tablets, injections, immuno drugs then to chemo.he dint give me an example of the more horrible things that might go wrong. he said another woman of my age has had this type of lymphoma for 10 years now and nothing has happened. he also said he has 55 year olds come in with no problems, and that he has 70 year olds come in and he doesnt even examine them fully cos the likelihood of anything happening is rare.

as for the kidney cancer, he said both himself and mr cole (my surgeon and kidney expert) were as sure as they can be that the kidney cancer had totally gone and that i was just left with this lymphoma.however, they are not 100% sure but usual patterns suggest that it has......... (im kinda worried that i might have some of it left........as this would be terminal)

he stressed that i could have stage 4 lymphoma and live for another 50 years with no problems ever happening at all. each person is individual and they treat you when and only if and when something occurs. he also said people die at an old age having this but die of something else, say a stroke or heart attack, never having any problems because of the lymphoma. he also added that old people die of a stroke or whatever, have a post mortem and the coroner doscovered the dead person had this type of lymphoma and never knew. it can lie dormant in your body and you might never know you have it.

he stressed that i am not terminally ill and i could live a very normal life without anything ever happening ever. but illness occurances tend to run in circles, say every 7 or 10 years but they keep a close eye on you. so before i left i said this ' so ok, ive got cancer, it might be stage 4 but you are not going to treat me and you are telling me i can live til im 60 or 70? i might go till then and never be ill with this or something might happen every 5, 7 or 10 years?' he said yes.

so, last night i came home feeling ecstatic. knowing i can and will live (he assured me of this, he didnt say he will try and make me live - he was adamant that i will) but feeling very shocked and confused knowing i will have to live the rest of my live with cancer. i told him that i was scared that i would live under the shadow of cancer forever worrying that i might fall ill; he said this would last 6 months or a year or so and once im back into my life i would forget it and learn to live with it. i was so happy last night but so confused. his last words to me were these. 'DO NOT go on the net, listen to anyone else - even a registrar in this hospital - I AM your doctor, i am THE expert in this country on this type of lymphoma and i know better than anyone how to treat it so go home, chill out, lose your anxiety, get better and get on with your life' i said 'can i go back to work?' he said 'get better from your op first and if the police need a letter tell me and i will do one'

so i got home and i sooooooooooo relieved and happy. i was gonna live for years and i didnt need chemo. but i was shocked and in disbelief.it seems impossible, i feel like hes hiding something from me.

before i left he said i had to have a bone marrow test tomorrow (today, thursday) and i would need to go to the dna clinic, have more tests etc etc to just make sure of some things and he would see me in 3 weeks time.

he also insinuated that if i had a cureable type of lymphoma i would have to have VERY intense chemo and still i only had a 50% chance of living. which is good, but i havent.

so, i couldnt sleep last night as my mind was whirring, im scared of living with cancer and it seems impossible that i can live a 'normal' life.i feel very suspicious and scared. i went for chemo appoinements and was told i didnt need treatment at all.

anyway, i woke up this morning and i was in soooooooo much pain. its only been 2 weeks since my op and i think ive done too much physically over the past 3 days and yesterday waiting in hospital was a tremendous mental pressure. so, i took all my pain meds and went to the hospital. oh my god, the bone marrow test was sooooooooooooooooooooooooooooooooooooooo painful. i hurt sooooooooooo much, all of my right side is swollen. plus, the doctor who took my marrow works for my lymphoma doc and commented on a few things as he did the procedure. he said most people who take the bone marrow test usually need chemo, which scared me and totally contradicted what doctor haynes told me yesterday. i told them doc haynes said get better and get on with your life and i said this meant going back to work in 12 weeks or so and this doc and his nurse just looked at each other and pulled a face, as if i wasnt gonna go back to work. he also commented on the number of years that you can now live with this. he said 10 years ago they aimed for 15 years but now 10 years later they aim for 20 to 30 years which is about the only thing that matched up. im thinking if every 10 years they can add another 10 years then by the time im 45 it might mean i can live to 75 - 80; a normal life span.

but when i got home, i was in so much pain, so fed up of this past 3 weeks and so confused that i just cant handle anymore and i feel like crying. i dont know what to think anymore. part of me believes that i wont need any treatment, that i will get better and return to my normal life; working, gym etc in 12 -15 weeks time after recovery from my op to live a normal life and maybe never get ill but part of me believes doctor haynes is trying to placate me for 3 weeks til the test comes back. im scared of living a life being ill, in and out of hospital and not being able to work. maybe im being dramatic and maybe today has got on top of me but i just dont know what to think.

im also worried i might have to have chemo after all in 3 weeks.

i know ive got to chill out, take this 3 weeks to forget it and get better and deal with what happens in 3 weeks if and when it happens but today i just wanna go to bed and forget it.

i know i can fight and get though this- i have no choice. i know living with this is fine if i can have a normal life but i feel lost today. thats how i feel but today im not convinced i will have a normal life. i need sleep and a few days off to get positive uh??? Wink

what do you say leo? is there anyone out there in the same position? i know i might seem like im mad from this post, maybe even acting like a baby - i know what people here and with lymphoma go through but im so shocked and so scared!

Replies welcome!

Thanks all, forgive my novel of a post.

Lisa Rolling Eyes

wjsmith82 · Regular Joined: 26 May 2005 Posts: 13

Hi Lisa,

You are not acting like a baby. Scared, confused and even angery are all perfectly valid feelings.

I found this site that pairs lymphoma patients up with other people who have gone through some of the same things we are going through. It is nice to talk with someone who understands. The URL is:

http://www.lymphoma.org/site/apps/fc/form.asp?c=bfIKIVMIG&b=38934

It sounds like from your post, that your oncologist has a lot of hope to offer you. Try and embrace it.

I hope your recovery is going well.

Bill

lisah · Regular Joined: 02 May 2005 Posts: 15

Hi Bill

Thank you for your reply and thank you for being so positive! Smile

It's kinda odd that you replied today cos today was my 3 week appointment. I saw my surgeon and kidney expert who was very pleased with my progress, he confirmed again that he is very sure he removed all the kidney cancer and was pleased about my lymphoma (a better option than it all being kidney cancer) and I was to see him in 6 months - yippe!

So, off I go to see my oncologist. Bad news. I have in fact 2 types of Lymphoma. Yes, 3 kinds of cancer in all!!!!!!! Now, if I was reading this I think I'd find it hard to believe. I have follicular which is the low grade slow growing which I might never need treatment for, but the main part of the tomour was a high grade fast growing (I was soooooo shocked and numb I can't for the life of me remember which one).

So, I start chemo for this on Monday. My oncologist is fairly sure he can cure me of the high grade and keep the low grade 'at bay' for many years. I've gotta have R CHOP chemo. My hair will almost certainly fall out and I might become infirtile which has upset me greatly.But, 80% of people are cured and he said I have a better chance as most of it is 'now in a jar with my bowel!'

I'm reeling and so upset and scared. I knew the live for years with no treatment thing was too good to be true!

But, I've gotta keep fighting and stay positive and beat this. Last week I felt very ill and the lymphoma nurse suggested a buddy so I will certainly visit your link.

It's so nice to hear from you and even though I don't know what you are going through I know you must be going through somewhat of the same thing.

I wonder if I'm a medical enigma having 3 cancers??????? I can't believe it. I've gotta beat it all for this fact alone uh??

Thank you again so much. Lisa x

wjsmith82 · Regular Joined: 26 May 2005 Posts: 13

Hi Lisa,

I have read that indolent forms of lymphoma sometimes transform to more aggressive types. Ask your oncologist if he thinks that the two lymphomas are related and also somehow related to your kidney mass. You should not feel like an enigma.

RCHOP is the treatment I am currently undertaking. I have completed 4 of 6 rounds. Whiile everybody is different, it has not been too bad for me. I have missed very little work (i.e.; the days I go in for chemo) as a result of the treatments and still manage to play basketball and go deep sea fishing. I have had slight bouts with queasiness and becoming tired, but all in all, not too bad. I cut my hair short befor starting chemo, and completely shaved it off after I noticed additional hair loss. This happened about 6 weeks into treatment for me.

Let your oncologist as well as your obgyn know of your interest in having children. You may be able to carry a child term through donor programs (in vitro). Check with you oncologist and obgyn.

I hope Monday goes well for you.

Take care.

Bill

lisah · Regular Joined: 02 May 2005 Posts: 15

Bill

Thank you so much. Youv'e kinda made me feel a bit better and put my mind at rest. This whole thing has been such a nightmare and to say that I've fallen apart this past two days is an understatement. I am so scared of having chemo.

I'm having my hair cut short tomorrow. Something which I will hate. I've had short hair for many years and I've let it grow to past many shoulders which has taken over a year as I am now a Police Officer and thought it better to have longer hair. I know it might sound silly but losing my hair will be heartbreaking. but hey, if it gets me better uh?

I'm so pleased that your symptoms arn't too bad, believe me I know what you are going through so I'm sure that not having bad side effects makes it more bareable. I pray that I will follow suit! I hope that your treatment is working well and doing what it should for you.

Good luck and I will let you know how I get on next week.

Lisa x

wjsmith82 · Regular Joined: 26 May 2005 Posts: 13

Hi Lisa,

I too pray that your treatments go well. And yes, mine has done exactly what it is suppose to do. After the 2nd round, my doctor scheduled me for a CT because he thought the tumor had recessed from the neck area. The next day the results came back; complete response. Since then he has even used the word remission. Just as quickly as this mass came (4 cm x 6 cm x 8 cm), it was gone. He wants me to continue through 6 rounds (2 more to go) because he said the tumor responded so well and my body has tolerated the chemo. I will pray the same for you; good response and well tolerated.

If you need someone to chat with about the chemo, feel free to use my user name @yahoo.com.

Have a good weekend Lisa and take care.

Bill

edwardw · New User Joined: 10 Aug 2005 Posts: 2

Hi,

This is my first post here. I have a 13 year old daughter named Katie.
She has Hodgkin's lymphoma and they said it was nodular sclerosing.
We went through four rounds of chemotherapy and the cancer was dead according to the PET scan. Yet the doctors wanted to do radiation therapy on her. She had a large mass in the chest and this would damage the heart, lungs, and breasts and usually results in breast cancer 6-10 years later. So we asked for a second opinion and Katie's doctor calls in Child Protective Services. And they take Katie to force radiation treatments on her. She didn't get any treatments for 40 days. She was very healthy at the time and it seemed her immune system had taken over and she would have been fine with no more treatments. Now they have decided to do 4 more chemo, High Dose Chemo, Stem Cell, and Radiation therapy on her. Sounds like over kill to me, and we are afraid they will kill her. They put her with some doctors that are not at all experienced in Hodgkins disease. The bad part is Katie is separated from her family for 2 months now and the treatments will take at least 5 more months. How can a judge and CPS do that to a child that is suffering from cancer? She needs the support of her family.

I noticed your post and you said you had an expert doctor named Dr. Haynes. Could you please give me his full name and address and phone number. I need to find an expert that can evaluate Katie's biopsy samples and look at her treatment plan. We need experts on Hodgkins to contact so that we can try to get Katie back home. People can call the Texas Governor at 512-463-2000 and say return Katie Wernecke back to her parents, parents have the right to make the medical decisions for their children. For the full story go to www.prayforkatie.blogspot.com.

Thanks,

Edward
Dad
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