Carcinsarcoma: Hi, I am new to all this and... - My Ovacome

My Ovacome

17,937 members20,162 posts

Carcinsarcoma

lisarm5 profile image
11 Replies

Hi, I am new to all this and wondered if there was anyone else out there that had had a carcinsarcoma stage 2 and what their experiences were. Also is chemo as bad as i fear or am i being a drama queen? I am due to start carbo/taxol on monday and i want to run away!!!

Lisa

Written by
lisarm5 profile image
lisarm5
To view profiles and participate in discussions please or .
Read more about...
11 Replies
wendydee profile image
wendydee

Hi Lisa

Sorry to hear you need this site but well done for finding us! I have no direct experience but there is a lot on the Ovacome website, look at the resources/ fact sheets section. Or for info about other women's experiences, search 'chemo' in the search box at the top of the page. Good luck, there is lots of advice on here and lots of ways of coping with chemo.

Love Wendy xx

Hi Lisa,

Welcome to the club that no one wants to join....you have come to the right place and you will get a lot of support on here...you are definitely not being a drama queen...and no one will think that...I am sorry but I haven't got answers...as mine isn't a sarcoma but there are people on here with this that will support you I am sure...however I have had Carbo / Taxol twice... try not to worry as it is amazing how you get through this...there are side effects I'm sure you know.. but jump those hurdles when you get to them...losing your hair isn't as bad as you might think...sending you my best wishes and love x G x

lisarm5 profile image
lisarm5 in reply to

Thank you for taking the time to reply,I have read some very inspiring stories on here and have spoken to Ruth who seems really lovely. I hope i can be as positive as the ladies whose stories I have read, i must confess i dont feel very positive but dont know why as mine is a stage 2 and all was removed at surgery with no evidence of spread. Im sure I will be a regular contributor as my poor family and friends need some respite from my constant cancer conversations.

Lisa xx

in reply to lisarm5

Yes Lisa we do know what you mean...cancer never leaves your brain.. and of course what you've got going on in your brain nearly always comes out of your mouth..this is normal we all understand... as I am sure your family does but it really does help to talk to others that are going through the same if only to see that it's "normal" love x G x :-) (a smiley or two to cheer you up) :-) :-) :-)

Hi Lisa,

I saw your question on the other post so not wishing to hijack the post I thought I would attempt to answer it here...as I understand it..you have had an operation which they feel they have taken all the cancer out...the chemo you are having is to mop up any cancer cells that might be hanging around...cancer cells that they can't see...it might be there aren't any... but this will be precautionary (better safe than sorry) it doesn't mean that the cancer has grown or come back after the op..it simply means that they are making sure...I hope this makes sense to you...so please try not to worry about this...I know you are worried about whether it is aggressive...but I had an aggressive cancer and after chemo I then went into remission for two and a half years.. ..I then had a recurrence but some people don't get a recurrence.. so I know it is hard but do try not to worry about this..it really is one day at a time love x G x

lisarm5 profile image
lisarm5

Thank you Gwyn,

what I dont understand is that if they say they have taken all the cancer away, that there is no evidence of it spreading into any other tissue and then you have chemo as a mop up, how do you get a recurrence? It seems that quite a few people get a recurrence and that worries me alot. My Oncologist and various other professionals have told me that i am in a very good position as my cancer was a grade 2 whereas alot of women are grade 3or4. Does the earlier your stage have anything to do with the likliehood of it recurring? It must be awful to go a couple of years and then have it come back and have to start the process all over again, how do you ever relax? My Oncologist has told me that if I get to two years without it coming back then I am in a very good position and if I get to five i can consider myself cured but i notice that reading some of the stories on here that that isnt the case. Dont know what to believe.

Lisa xx

in reply to lisarm5

Hi Lisa,

As far as they can tell they have took all the cancer away...like I said the chemo is to make sure (mop up) but there can be seedlings that hide and are not visible under a microscope... they also are not active.. and because they are dormant.. they will not respond to chemo.. so they are not necessarily killed off...and even though they are not active but they might become active at some point..chemo will kill off active cells..the earlier the cancer is diagnosed means that there is a better chance that it has not gone elsewhere...

It is a bit like a garden when you see the weeds you pull them out.. but you can't see what is underneath the ground.. and if you have left some roots or seeds... the weeds will come up again this is the same with cancer.

What they meant about the five years.. is really to do with statistics and it is deemed that if you don't have a recurrence in five years.. then you might be cured..but of course it is by no means certain and some people will get a recurrence after five years.. but the statistics would have recorded it as a cure (I hope this makes sense)

I am concerned that I might be worrying you unnecessarily.. as they have told you that you are in a good position...please try and accept this and don't run ahead..it might well be that your cancer is gone for good..I sincerely hope so..I will try and help as best I can...you can always send me a private message if you need to...my advice to you is to keep a medical diary of any symptoms / aches / pains / medication so you will have a record...also when you see your oncologist write your questions down so you won't forget to ask them love x G x

lisarm5 profile image
lisarm5 in reply to

Hi Gwyn,

many thanks for your replies and advice. Im afraid im a bit of a computer numpty and have no idea of how to send you a private message lol

Lisa xx

Hi Lisa

Course you aren't being a drama queen - I think everyone is scared of chemo, but in my experience they will do everything once you get there to reassure you and put you at your ease. It is important to be well hydrated, so drink lots of water before you go.

Yes the stage you are at diagnosis makes a big difference to the probability of recurrence. If you really want to look there are some SEER statistics on this, you can find them with google, but as Gwyn says, it would be really great if you can accept what your docs say, you ARE in a good position. (This is a really good one coming from me, I worry about everything!)

All the best, Monique x.

lisarm5 profile image
lisarm5 in reply to

Hi Monique,

many thanks for your reply and reassurance, it means alot

Lisa x

Just to say; I had carcinosarcoma: 3c grade 3 aggressive. I was lucky and the surgery removed all visible disease, carboplatin chemo and lifestyle changes have left me in full remission for 3+ years ever since. Don't despair - concentrate on finding a healthy, stress-reduced lifestyle that suits your situation.

Very best wishes,

Isadora.

Not what you're looking for?

You may also like...

Low Grade Serous carcinoma

with Low Grade Serous. I wanted to hear stories of people that have not had any reoccurence for long

Chemotherapy before surgery.

extensive bowel surgery if I had surgery first. Has anyone had some chemo before surgery and how it...

Is anyone on maintenance therapy?

respond very well to carbo but seem to relapse at about 6 months. I am trying to find out if there...

Weight loss after surgery

Has anyone else had this problem please and did it improve?

Im joining the journey.

applaud your strengths. I am just starting my Journey. I have not had a diagnosis just testing...