cancer treatment yes or no

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cancer treatment yes or no

Postby Kim » Tue Jul 18, 2006 8:53 pm

Something i've been thinking about...

Fact...Treatment for cancer be it surgery, radiation, or chemo can bring on LE.

However, for someone with LE [i]already[/i] in full body LE...
would cancer in itself make LE worse?
would the treatment make LE worse?

Seems to me like it would. So what is worse? Treating the cancer or letting it go? Some people who get cancer opt for no treatment at all and prefer to live what is left of their lives without the horrendous affects of radiation and chemo. Seems like for someone who already suffers with LE, adding cancer treatment would just make it far worse with no guarantee that it would get rid of the cancer. And if it did, wouldn't that treatment have made LE worse? I just witnessed the 2 year battle with cancer of someone very dear to me, and she lost. She fought and fought and yes, she lived for 2 more years, but those two years were pure hell. So what was the point?

I told my husband recently that from what I understand, that if I were to get cancer that I would not want to get treatment since it would only make my condition worse. I hate this life with LE as it is; why would I want to make it worse and prolong this existence?

I'm not being fatalistic, and i'm not depressed...just looking at the issue matter of factly. Feedback on this would be appreciated, and I realize that everyone has their own opinions and reasons for how they might feel on this particular subject. I do not mean to offend anyone either...just tossing out some recent thoughts...

Kim :)
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Postby patoco » Wed Jul 19, 2006 1:19 am

Hi Kim :)

I know your not being fatalistic and you absolutely aren't offending me by bringing this up.

It actually is a reality that I have had to deal with.

I was first diagnosed with mixed B-cell lymphoma in 1995 and then a second form of lymphoma in 2000. Kim, for me, the whole process has been a nightmare from hell.

First I went through several oncologist who absolutely could not concieve of how to deal with lymphoma and hereditary lymphedema.

I also found out at the beginning that very probably as a result of the lymphedema that my immune system was in serious shape...chronic leukopenia...they called it. That ruled out agressive forms of chemo. I did initially have radiation on the area they first found on my left leg.

Last year, I found a doctor who actually understand both lymphoma and hereditary lymphedema. He started me on Rituxan and I am supposed to go through a series of treatments for a couple years. the real snag. This year, my entire lymphatic system went crazy. For sometime now, I had been dealing with lymphedema starting in my arms. This year, my entire lymphatic system has gone kapoot. I have abdominal lymphedema, pitting edema in the back....all over.

I also found a research study that indicates B-cell lymphoma actually destroys the lymph system in a way that they don't understand.

In April, I went to see Dr. Paula Stewart who confirmed what I had already figured out about the whole body lymphedema. She wanted me over in Birmingham for immediate treatment.

For me, it has been an emotional roller coaster since. I haven't gone over to Birmingham yet...and I cancelled my last chemo and am actually supposed to have another in August. I don't know yet if I will resume it.

Do I go to Birmingham...go through emergench, intensive decongestive therapy...then live like a mummy stuffed into a whole body suit? Do I go back to chemo to stop the lymphoma? If I do both and can expect a much longer it going to be a life that I want?

There is so much lymphedema and lymphoma in my family that Dr. Mortimer from the UK even suggested our family may have an uncharted LE gene or a serious mutation of an existing one. So....even if I do all the above, am I just genetically predisposed for more lymphomas????

I don't know.....I really really don't.....for the first time in 53 years, I don't have an answer. It will be interesting to see if others respond and what their thoghts are.

Appreciate you bringing this up.....

Big hug to Ya

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Postby silkie » Wed Jul 19, 2006 5:36 pm

Hi Kim
Hi Pat ,

I have thought long and hard for many months on this

I as you kim hate living with lymph and if i was in Pats position

I think i would feel like you Pat,

But im not and I can imagine but i dont know if the time came

would i stop all treatment I dont know until that moment i had to face that choice.

I have a friend for a long time now I have known to make the most of the presious time we have. I am there and support any desision they make the choice is theirs

But inside its different inside i want to scream i want my friend to be here is that selfish yes it is but remember when my friends pain is over

the family .friends pain begins my pain to and there is not medicine for there pain either

It has to be a personal choice so many things other than your illness will influence that choice and when faced with it it may be you find that desision near impossible to make

hugggggggggggggg Irish

Silks xxxxxxxxxxxxx
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Postby patoco » Wed Jul 19, 2006 7:29 pm

Hi ya Silkie :D :wink:

Guess I got a bit carried away this morning and never really did answer the question Kim asked.

Whether or not it would be ok for a person to go through cancer treatment whenthey already had lymphedema would be based on several factors.

Actually, there are primary lymphers who have successfully been treated, so there is good news there.

It would depend on factors such as:

1.) Type and stage of the cancer

2.) Stage of the lymphedema

3.) If the immune system had been effected. See, this is what really threw a wrench into my situation. The standard treatments for lymphoma (usually referred to as CHOPS) was ruled out because my immune system was trashed from the lymphedema and the tissue in my left leg especially was already incredibly fibrotic.

4.) The tests used to evaluate and stage the lymphedema. Hopefully, the doctors would have enough sense not to just yank out lymph nodes.

5.) The treatment involved in knocking out the cancer. Now on that point, it is true that should you have cancer in a limb that has lymphedema, you should probably not have radiation.

This would be for a couple reasons:

a.) The radiation would further damage the tissues and lymphatics in that limb. (Found that out myself)

b.) One factor for lymphangiosarcoma, which is a horribly rapidly spreading soft tissue cancer (almost always fatal) is radiation on the lymphedema tissues.

So, the answer could well be yes that even with pre-existing lymphedema you can be successfully treated for cancer.

:roll: ...but....hope none of our visitors and members ever have to face that.....not fun at all.


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Postby silkie » Wed Jul 19, 2006 11:19 pm

Hi Pat

I understand about the treatments Pat as much as I can

kim said

I told my husband recently that from what I understand, that if I were to get cancer that I would not want to get treatment since it would only make my condition worse. I hate this life with LE as it is; why would I want to make it worse and prolong this existence?

and i am saying

Cancer is like a pebble in a pond the person with cancer being the pebble drop that pbble in the pond and those rings that ripple out are the people around you that it effects to

With all those people around that could inffluence a desision like that
you cannot say untill a certain moment when all those influences bere down on you what you would do

I hope to God i never have to ever consider what you have Pat and my little welsh friend or our members

Not all cancers kill as you say treatment is there


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Postby Kim » Thu Jul 20, 2006 12:01 am

Thank you so much, Pat and Silkie, for your responses....just what I was looking for...and more to think on...

Very true, there is no way that anyone can know just what they would do unless they find themselves diagnosed with cancer. It's very easy to say what you think you would do, but that is not the same at all. One thing is for certain though...information on the subject of cancer is key, especially for us lymphers!!

That ripple affect is quite important and can determine quite alot...either way.

Pat, I hate that you are having such a hard time, and I so appreciate all that you continue to give to us. You are certainly a man of great strength and integrity and much admired by those of us on this site. I think I can safely say that we're all pulling for you with alot of love, respect, and prayers.

I hope that this topic ends up being no more than just that for us; we have enough of a fight on our hands with LE!

Kim :)
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Postby silkie » Sun May 20, 2007 2:48 am

Hi Pat, Hi Kim

Its about time i added to this discussion again

I recently had to make the desicion chemo or not

I long ago decided i would not take the option of chemo if I ever

was unfortunate enough to be it that position

When i was actually faced with the choice it was totally different

One i am natuarally a stubborn woman and i think lymph has made me a fighter
Two the cancer might be in my body but it effects your family and friends

Three I love life even with lymphedema and lipedema do i just let that go to this thing growing and spreading inside of me?

No I battled with lymph for nearly 50 years it was not in me to just
not do anything

my choice was made on the facts

If i did not have the treatment maybe two months i was given

i have small cell lung cancer very aggresive and spreads very fast

It was an easy choice i just really felt i had a future and i had to be strong
and i had to deal with this

Actually I feel living with lymph helped me if you can live with lymph and the daily routine of caring for it I could live with the possibility of chemo
as part of my lifes routine

Well i had the chemo

The small cell lung cancer i have is not operable or cureable but can be to a certain extent controlable with chemo

i am in remission now the chemo shrunk it. I know it will eventually grow again and i will have to have treatment again but when that will be is
in Gods hands

I am ready to do it again when and if i need to like my lymph its a condition i live with each day . I live my life not my lymph or the cancer
each day is a blessing and worth a few weeks of discomfort from the chemo and the daily routine of MLD

Silkie is stil dancin and i am so looking forward to the future


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Cancer Treatment

Postby dyocum555 » Fri Jun 08, 2007 12:35 am

Hello All,

I just had over 2/3 of my lower lip removed because of cancer, actually they said there was two types of cancer growing side-by-side. They offered the Chemo, Radiation, and Surgery. I chose the surgery because they would have had to do it anyway and frankly...I was scared about the other two options.

I was fortunate enough that the cancer was caught early and it had not gone into my lymphatic system. They thought there might have been some in my neck lymph nodes and ruled it out with a PET scan.

I have had a few family members and friends die from cancer and have often wondered what I would do in their shoes. When they said I had cancer, I talked it over with my wife and I decided that if it had gotten into my lymphatic system and other organs...that I would go with quality of life and not quantity.

So to me I didn't feel like I was going to be giving up, just choosing the option that felt right for me. My wife of course would have wanted me to fight, but she understood.

I'm just very, very happy that I did not have to make that decision. Being able to only stuff tater tot size food in my much smaller mouth is a great trade off for life.

I agree that you have to way all the facts and make the choice that best fits you.

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