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is there anyone has third time reccurence in uterus cancer and has long year remmision?

givemehope's picture
givemehope
Posts: 2
Joined: May 2013

hello everyone. im new to this forum. i was diagnosed endometrial adecarcinoma last april 2006. had radical hysterectomy and radiation. all is good then by 2010 i noticed my left leg is swelling had DVT because of the lymph node in my groin pressing the flow of my blood vessels. i didnt have any surgery because my onco said its not operable. i had 1 month of radition only during weekdays. then 2011 i had again pain in my hips, so my oncologists made me an appointment fot ct scan, it was bad news. the cancer reccur same place in my groin. i didnt have surgery as well. this time. i had chemo adryamycin and cisplatin..i had 8 hours to finish my chemo it was a long long wait. the side effect aside from being sick, lost of taste, dry mouth, weakness fatigue, i developed peripheral neurophaty in my left leg. the neurophaty never went and this 2013 by february i noticed more pain in my left leg. the pain is like those who have sciatica. i research in the internet and bit worried because of my history. at first i was on denial i keep on taking painkiller believing the pain will go away. but as the days passed, i made an apointment to my oncologists and had ct scan. again the cancer recurred in my left pelvis pressing the nerves and the bone. my whole left leg is in pain now, im in a cane, cant hardly walk. my chemo will be carbo/taxol and the side effects is peripheral neurophaty which i have already...but i dont mind that as long as i will have years to live for my family, and thats my concern. my chemo starts this june..

is there anyone here who has long years of remission with uterus cancer that has 3 reccurences.. it will be my guide knowing if someone is stepping same in my situation. im reading most of the posts, but i never read like my situation thats why i post mine..or maybe there is somewhere but never had a chance to browse more.. but i will be glad if anyone can share the same experiences as mine

take good care everyone,

givemehope

TAyers's picture
TAyers
Posts: 39
Joined: Aug 2012

Hi, I am replying to you because prior to me finding out I had stage 3c grade 3 UPSC I had alot of pain going down my left leg. After my hysterectomy, the pain was no longer there. I said something to my surgeon and he didnt confirm it was from the cancer, but my theory is the fluid and nodes they found with cancer was pressing on a nerve. I once in awhile get pains done my hip and legs and wonder if its returning. I have only been 4 months out of treatment and anticipating next scan. I know this isnt the answer you were looking for, but wanted to chime in to say I think it's ironic that I had the same leg pain. Anyone else ? Tami

Audray's picture
Audray
Posts: 24
Joined: Jul 2012

I think this must be more common than we think. I thought that I had inflammation in my hip joint and knee, i.e artheritus. So we really do need to check with our consultants with every pain or ache we get. Putting things off till the next appointment just dosn't work. I have made far too many mistakes like that. and wished that I had pushed for appointments sooner. x

 

Audray's picture
Audray
Posts: 24
Joined: Jul 2012

I think this must be more common than we think. I thought that I had inflammation in my hip joint and knee, i.e artheritus. So we really do need to check with our consultants with every pain or ache we get. Putting things off till the next appointment just dosn't work. I have made far too many mistakes like that. and wished that I had pushed for appointments sooner. x

 

Audray's picture
Audray
Posts: 24
Joined: Jul 2012

Hello there,

I am sorry to hear that you are having this pain. I am in a very similar situation to your self. I had Endometrial Cancer , Dx in May 2010, at that time it was B1 grade3, but within a Lymphovascular area, shucks! May have been cured at that time just with the hysterectomy. But alas, I  was not advised to have radiation treatment after this, since it was a small chance it would reccure. By September the same year I was getting quite a bit of back ache, so I got in touch with my Nurse, who thought that it was unlikley to be the cancer. So I went to the next due followup appointment which was postponed until the end of January 2011. Scans were ordered and it showed mets in three Lymph node areas of my pelvis and also paraaortic region. This is now seemingly uncurable but treatable.  So I started Chemo at the end of April until August 2011 , I had 6 sessions on a three weekly cycle. Carbo./Taxol.. Luckily the cancer did respond to this by shrinking the Lymph nodes by half, so the cancer was still there, but not progressing.

I had managed a good 18months  since then feeling well, still abit of neuropathy my in feet and fingers. But able lead a happy life. The largest Lymph node had doubled in size during that time, so was slowly progressing, up to the scan in November 2012.

This March 2013 I noticed that I was finding it hard to walk and having to sit down because of aching in my left leg. Then a few weeks later I was in uncontrolable spasms of pain lasting fro 5 to 15 mins, which would resolved if I sat down (and used unbeknown language for me!) I thought I had strained my groin area because I had a virus which caused me to cough and cough! but of course it just got worse, ad would wake me during the night, but this wasnt continuous pain, just these spansms. I noticed that when I sood up my leg or rather thigh area was going rather purple too which reverted to normal if I sat down, or rather laid down.

I had another scan in April 2013, which tranpsired that the lymph node in the Left external iliac region had now doubled in size to 6cms. It is pressing on the arteries or veins that go down that leg, also is pressing on the nerves in that area and the muscles also.

I have been started on weekly carbo /platin, which has made me very sick, dehydrated, and the pain meds, have been not good for me also. So I had the first chemo at the end of April, but instead of haveing the second I was in hospital, so had to postpone the second. I then had the second this is supossed to be the second of 18 weekly sessions. but the same thing happened. It was even worse than the three weeky sessions I had in 2011. But I at least had one week out of three that I was feeling ok. This was looking like I would not have anytime feeling ok. So I saw my Dr. last Friday and I am enjoying this week off treatment with my family.Who are determined to buildme up as I have lost quite a lot of weight. I shall be starting Chemo again next Monday,only three weekly again.Shringe driver to deliver the antisickness medication direct, I just couldn't keep the tablets down before. So I am hoping and praying that I can manage this, and also that the   cancer is responding to being challenged with the chemo regimn  as before. At this time I can not walk far, but the spams seem to have stopped, just general aches, not enough to take more pain relieve medication. I am hoping that this will work but its a difficult journey,We have to take a day at a time. I am so much enjoying my family and friends,and the sun has come out here these past few days. making this part of yorkshire look like paradise to me.  We will have good days and bad days no doubt. But I seek out every moment of joy I can find, which gives me treasured memories to get me through the hard times. I do hope you can get a good   treatment plan that you can manage, and who knows, we shall be comunicating on here for a long time to come. Love to you.x

Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

After a total hysterectomy in 2005, they found cancer and after staging surgery was diagnosed as Grade 2 Stage 3 endometrial adenocarcinoma.   Treated with Carbo/Gemzar and 3 doses of brachytherapy.   Prior to this diagnosis, I was having pain that started in my lower back and then would radiate down my left leg.   I went to the chiropractor many times until it was so bad I went to the gyn who eventually ordered the hysterectomy after a laparoscopy showed severe endometriosis (not cancer - but in fact was).

i was doing fine until sometime in 2010 when I started having pain sort of like a hemmoroid area and the leg pain again (like sciatica).   After a CT scan I was told that I had recurred and that I needed chemo right away and that they probably couldn't get it and would end up with a permanent colostomy.  I sought a second opinion who did a biopsy of the "hemmoroid area" and it came back positive.   This second opinion sent me back to the first doctor and it was determined by them that it was inoperable.   I sought a third opinion out of state who eventually was able to operate and was successfully able to remove the problem area which by the way was not cancerous.  However, they did find one lymph node that had microscopic cells.    I could have done radiation but decided just to take a wait and see approach.  My doctor did tell me at that time that if I ever recurred there again that it could possible effect the use of my left leg.

Today, I feel that I might be getting scar tissue back because I started to have some lower left back pain and my left foot is once again starting to feel like it has a vibration in it.  It comes and goes and some of the time it more noticable if I have to have a bowel movement.  I had a three week period of lower left back pain and went to the chiropractor and then to my PC who ordered an xray.   The xray didn't show anything and I am not sure why I was told to get a back x-ray. I have not had any type of scans for a couple of years now due to changes in insurance (which makes me nervous).   Now my recent doctor (who I simply adored) has moved to Texas and I am meeting with my new doctor on Friday.    I still go every 6 months for check-ups.

I don't know if this helps you.   I wish the best for you on your upcoming chemo.

 

Kathy

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I had some back issues 6 months after completion of treatments in '09.  I spoke with my oncologist who told me NOT CANCER...as just had CT plus my CA125 marker was right where it should be.  Well....as time went on the pain was still there and little by little got more intense -- moving down my left leg in pain.  May '12 I had an MRI which showed "bulging disk and pressure on sciatica".  Bingo!  Off to new chiropractor for 3 intense months of treatments and today PAIN FREE.

I throw my story out there as not every back pain is cancer recurrence, but boy oh boy I had those thoughts until the MRI.  So, sorry to read any of us must endure lymph nodes with cancer and more treatments.  

 

Best to all you strong ladies.....don't ever give up as there is always hope mixed in the crazies of our lives~~~

Jan

HellieC
Posts: 425
Joined: Nov 2010

I am so sorry to here that you have had multiple recurrences - but there is hope!

I had a hysterectomy in 2001, first pelvic recurrence in 2007 treated with radiotherapy, second pelvic recurrence in 2010 treated with surgery and chemo and third pelvic recurrence in 2012 which is being treated with hormone therapy (Letrozole - an aromatase inhibitor).  So far it is responding and has shrunk and is now stable.  My oncologist says she has had ladies stay stable like this for a number of years on hormone therapy.  I am told that it is incurable but it is possible to find treatments to manage it.  We are all individual and the treatment options available will depend on the size, type, position etc of the tumours.  But THERE IS HOPE!

Wishing you well

Helen

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Yes there are options which change daily.  The longer we're around the better chance of new treatments that can really bite this cancer in the butt.  Each day I'm reading more and more positives from research on cancer and it's very promising.....gives us hope.

Best to all the warriors!!!Smile

Jan

givemehope's picture
givemehope
Posts: 2
Joined: May 2013

sorry for not replying soon... was busy crying most of the days lol..cos of the pain :( i think i wont count on the years of being in long remmision or not. as long as i wake up everyday, i will be thankful. i will  just think of positive rather than hoping. im glad i found this site, and found you ladies that life goes on even we have cancers...and we can beat this...

my chemo starts on june 12... yes my left leg is so much in pain.. left hip,  to the buttocks, whole leg and to the sole of my foot.its like im wearing socks very heavy feeling and it hurts my toes very sensitive. im on tablets amytryptiline zomorph oramorph and paracetamol which just give me a bit of relief. the tumor is pressing on the nerve on my buttocks that gives the whole leg in pain.. the good thing is there none in my vital organs. im not looking forward to chemo because of the neurophaty side effects again of carbo/taxol. my cancer was stage1c when i was first diagnose and was NED for 4 years but after that 'boom' my life changed, almost every year i have reccurance... :(

im not ready to give up yet.. i really hope and praying that the chemo will help shrink the tumor and my pain in my left leg will be lessen as i know the neurophaty will stays.

i will post after my chemo and see what will happened. 

thanks again wonderful ladies for replying to me :)

lovelots,

givemehope

Audray's picture
Audray
Posts: 24
Joined: Jul 2012

I do so hope this works for you. It looks like I am in the same position as you are, and I restart chemo on Monday 3rd of June. I had originally started weekly chemo on the 29 the of April. But I was so sick the medication wouldn't stay down, so I was back at the hospital for most of the week, and too poorly to have the next weeks chemo. The pain in my left leg, was sparodic pain, not constant. A nerve pain. So how ever much medication they gave me it just didn't work.The medications caused me to have alosinations.(Spelling?) Which was not good at all, frightening in fact.! Now I am off these drugs, I have got my brain back, which is just wonderful. and the pain spasmns have stopped all together. I still have pain down my leg when I stand , because of the pressure on the blood vessels in the groin area, so I am using a wheel chair to get around. and I have got a disabled sticker for the car thank goodness. Of course I can't drive just now, so have set a goal that at the end of this chemo, if it works. I shall beable walk and possibley drive myself again. I too have been affected with neuropathy in my feet and hands, which as stared already, and my gait is abit difficult, which is an odd feeling. These happend the last time I had this chemo, 2 years ago now.  And gradually got better over the months.

So we will be having the chemo for about  the same time. I think I shall be having 5 session of three weekly.  So it will be a long summer. But if it reduces the cancer, and gives me a pain free life for how ever long. I shall be so grateful and jumping for joy. My cancer is Grade3. not good.  But it responded well the last time, so I have to be optimistic. The Nerve pain specialist Is rare around this part of the world, but when I saw him yesterday he spent over and hour with me, going through how they could help me with injections as nerve blocks and pain relief into the the muscles that are affected. But as the spasmns seem to have subsided, we have decided to wait untill after the next chemo, to see if the pain is reduced again. Although I only have abit of an ache most of the time.(3/10 Except when standing for about 5mins.) I have also found a  lidocaine patch on the leg as helped me through, and  better than medication for me. I don't know how that works but it seems to have for me. I do hope you will beable to post on here, I have found it very helpful over the past year, there is usually some one  who has a similar concern.  It is such a lovely day here today, after a very long winter for us all, it will so nice to go out and just listen to the birds sing.(You don't get that in hospital.!)and fresh air. this world is such a lovely palce, so yes its worth all this if we can continue to enjoy and celebrate Life.  

Thanks again for posting.

Love and best wishes from Audrey.

 

 

 

HellieC
Posts: 425
Joined: Nov 2010

Thinking of you both as you go through further chemo.  It is a beast of a disease and recurrences in the pelvis/groin can be so difficult as there are so many main nerves and arteries in the area.  My second recurrence was pressing on a nerve and I had constant "toothache" like pain in my buttock, groin and left leg.  Chronic pain drags you down unless you can find something to keep it under control.  It is also a constant mental reminder of your illness which doesn't help.  If cancer is the enemy, then pain is the sneaky sniper!

Audray - remember that, as you didn't have it first time around, radiotherapy may be another option for you - it is often used to shrink tumours and relieve pain and pressure on nerves or other structures.  There is also hormone therapy which if your cancer is hormone receptive may keep it under control or shrink it down for some time to come.

Whatever treatment options you are facing, dear ladies remember that there are always others on this board here to share the journey, offer advice, or just listen when you want to rant.

Kindest wishes

Helen

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