Chemotherapy having no effect on reoccurance.

Hi there

I hope you don't mind me joining you ladies.

I have been reading with much interest, the journeys you fantastic brave ladies are taking in your battle against this awful disease. I have so much admiration for you all.

My precious mum was diagnosed with stage 1c (apparently!) Ov cancer in Dec 2004. She had a full hysterectomy and was pronounced clear of disease following this. She had 6 rounds of carboplaitin as a precautionary measure post op.

After this, mum was really lucky to enjoy 2 years feeling great - normal ca125.

Then in oct 2006 she felt a niggle in her pelvis. CT scan showed a mass and biopsy confirmed reoccurance of cancer. An isolated 6cm lesion. Her CA125 remained normal.

We pushed and pushed for surgery but oncol thought it would be too difficult to operate without damaging healthy bowel, bladder etc.
She started chemo in Jan 2007 - 3x carbo/taxol : No change in size of tumour (and she experienced allergic reaction to carbo!)
3x Doxil/caelyx : tumour has grown by 10% - but still an isolated lesion.

Now she has been offered a 'reluctant' laprascope to look and see if it could possibly be removed - mum is petrified that this may do more damage and cause disturbance in there. OR 3rd line chemo of Topetecan OR wait til she gets some symtoms (symptoms) ie Bowel obstruction, pain etc as at present she has none.

We are just so scared that nothing seems to be working.
Please does anyone have any thoughts or experience.
We are in the UK.

Best wishes to all of you

Kelly

[nyc lady]

Kelly - I guess being in the UK you are unable to switch doctors.  I would think that if it is isolated that surgery would be a good option.  The one thing that is constant when it comes to this disease is that once someone recurrs all doctors treat differently.  There are numerous other chemos out there.

I think if it were me and one isolated mass, I would beg them to operate and remove it.

I was dx'd stage 1A in 2000, they only removed my right ovary and tube, in 2004 they went back in for the rest.  In 2006 I developed a mass that they are watching and at this point there have been no changes.  I want it out as I feel like a walking time bomb....but....the doctors feel that the risk of surgery out weighs the benefits at this point.  But for me, it would be pelvic surgery number 3.  They wait until they can't wait anymore.

Glad you found us and we are here to support you in any way we can.  Maybe one of the ladies or family members from the UK can better assist you with moving thru the medical system in the UK.  Although our medical care costs are much higher, here in the States, we can get 2nd opinions and switch doctors much easier.

Let us know how things go.

Pam

[rmarie]

I was stage 3c OC with 2 isolated lesions on recurrance and 3 areas in the colon, my Dr.'s first words were we can remove them.  Which they did, and then I started more chemo, I would go with the surgery.  thought are with you, sorry we have to welcome you to the site.

[Barney22]

Hello Kelly - I'm in the UK also.  Whereabouts are you situated ie your mum?  It's perfectly possible to change consultants here - you just have to ask for a second opinion.  Consultants are very used to that and don't mind.  You can either do it NHS but if you are in a hurry and can afford it a private consultation is also possible.  I paid around

[Empress Divine]

I am 32 yrs old ,no kids. I was recently diagnosed with a 4cm right dermoid ovarian cyst.I have had a bleeding history for 10yrs.During that time i would bleed heavily intially for weeks. However , for the last few years it got worse and I would sometimes bleed for months.  There were also times I would go on  for months and have no period.
I have been to several gynae. Intially they would  give me birth control pills and cycle me out. I have also done lots of hormone tests( LH, TSH, Prolactin Thyroid etc). I have also done Pap tests.They all came back normal except my Lutenizing hormone.(Not sure if that was signicant) Sometimes the birth control work but I hated them.I gained a lot of weight and the periods would be extremely painful --worse than normal periods.
In May 2007, I went back to another doctor after having 4mths of DUB.I did another hormone panel of tests as usual ,  also fasting glucose,and sonogram.The results came back and there was the cyst.I was worried about fibroids as that was rampant in my family. The doctor before this one had a prognosis of polycystic ovaries . My current doctor on my second visit recommends laparoscopy to remove the cyst. I am scared as hell as he  also said depending on what the cyst is like they may have to remove that ovary.
I put off the surgery and i am now in the process of getting  a second opinion. My biggest problem is want a good doctor who practises conservative medicine --someone who will take my needs into consideration. Not trigger happy to cut out everything or seek the easiest way out. I would like to have to kids . I know if it is bad then it will have to go.However, I learnt that if they spear some of ovary tissue even as much as finger nail that is enough to conceive. I am so torn !! Worse yet as i just got accepeted to go college this fall and i would like to get both things done but unwilling to rush/compriomise my health.Please members of the panel i need your advice.Thanks  

[Macy1509]

Thankyou everyone for your comments and experience.

Since December when biopsy confirmed a reoccurance for mum. We have pushed and pushed for surgery as it was initially given to her as an option. Then her surgeon  (following discssion with others) decided that it was likely that the mass in her pelvis would likely be attatched and entangled in bladder/bowel etc and may cause her more damage. Whilst we did understand what they were saying  - now with the chemo not working we just feel so desparate!!

Barney - I'm sorry to hear that you are going through it. Mum lives in Lincolnshire and is being treated by oncology team from Nottingham. Where abouts are you based? A 2nd opinion is an option - but poor mum just feels as though she 'lives' at the hospital anyway. I don't know if she can take anymore! I actually live and work in Leeds and I see a gynae/onc in Leeds (as ovarian cancer appears to be genetic for us) and keep wondering if I should take mum to see him - but not sure.

Thanks again

love Kelly x

[Kellykil]

Hi Kelly, that's my name too! I just today saw an online video on the Web MD website talking about a drug called: Phenoxodiol (hope I'm spellng correctly). It allegedly helps chemo resistant patients in making the chemo work. Please ask your doc about this. I hope this helps, and please let us know!
Kelly