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Cancer back after 4 months

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AmiLou
Cancer back after 4 months

Hi all, I'm nearly five months from my radical hysterectomy and having initially had the all clear have recently learnt the Bugger is back Bigger and angrier than before!

I'm starting chemo and radiotherapy in a couple of weeks, this has all knocked me for 6. I will fight this but does anyone else have this experience so quickly after first treatment. Doctors have said I'm that unlucky person who happens occasionally.

I will fight this with all I have as plan B if this doesn't work sounds horrific and terrifyingly life inhibiting.

My friends and family are fab but it would be nice to talk to ladies in a similar position. I'm 35.

Thanks

Ami

TeresaF.

Hi Ami:

I'm so sorry that you have to deal with this crap again. 

This is so hard to understand. Was the recurrence picked up at a check up, or were you feeling unwell? It just seems so wrong that it could come back so quickly and bigger: I thought CC was such a slow mover. However, although it does sound unusual, I'm sure that someone on here will be able to jump in and share a similar story.

So many women on here have been successfully treated with chemo and radiation; I know you'll be one of them. Hopefully, it will all be done by Christmas so you can put this year behind you.

Keep us posted.

love t xx

24 March 16  Annual smears up to date. First abnormal pap.

14 April 16  Cone biopsy plus D&C under GA. 

28 April 16 Staged 1A1. Microinvasive adenocarcinoma. Biopsy had removed  tumour, but CIN 2 in situ. Clear margins, clear uterus. Hysterectomy booked.

10 May 16  CT Scan and XRay clear - yay!

23 May 16 Simple hysterectomy, excluding ovaries

26 May 16 Biopsy of cervix revealed a skip lesion/further tumour ( 2mm x 6mm) higher up. Uterus clear. Still classed as 1a1 so treatment will be 6 monthly check ups.

1st June 16 PET scan clear. Yay!!

13 Dec 16 - first check up.  All good.  Yay!

10th May 17 - 2nd check up. All good. Yay!

Tivoli
Tivoli's picture

Hi Ami :-)

I am distressed to read this. All I can add is that is that chemo-rads does the business! Really it does! I did chemo-rads about 4 months after surgery, I don't know why, I was not told it had returned but simply that it was 'precautionary' Either way, now that you are 4 months beyond surgery you are most likely properly recovered in which case this next bit should prove to be a breeze :-)

Do you know yet if the chemo side of things is going to be Cisplatin or something more aggressive? Cisplatin is really doable and doesn't cause hair-loss.

Be lucky :-)
Tivoli

AmiLou

Hi Tivoli

I'm having the Cisplatin.  Really hopeful that this will kick the cancer out once and for all.

Thanks for the support

Ami

Lolli888

Hi ami

i am so sorry to hear that your cc has come back. You are probably still just starting to feel normal after your radical hysterectomy.  I'm currently in chemorad and it's not that bad. Hopefully this new treatment will kick your cancers ass. Did you have any symptoms or how was it found. I'm not even done treatment and I worry about recurrence. 

The good thing is they still have lots of treatments beyond your original surgery. Stay positive hon. We are all in this together!!! 

 

March 8/16: postpartum pap clear

May 10/16: abnormal looking cells while putting in mirena under GA biopsy taken

May 18/16: severe dyskaryosis CIN3

June 9/16 :lletz procedure under LA

June 20/16: results from lletz shows cancer,waiting for mri

July5/16:staged at 2b, no lymph node involvement 

July18/16:started chemo/rad

sept6/16:finished 5 chemo,25 external rad,5 extra boosts,4brachy

sept.... The waiting begins. 

june2018:NED

CD84

Hi Ami

I'm really sorry you've had a reoccurrence. You will manage the chemoradiation easily. Its often used instead of surgery so that shows how effective it is. 

I think maybe i take a different view on the plan b you mentioned. To me, having another option is a positive thing, whatever it is. What sounds horrific to you could be somebodys dream to have. I'm sure you won't need it, as Tivoli mentioned chemoradiation is the business! 

Good luck with the treatment, its honestly not as bad as it sounds.

Cara xxxx

AmiLou

Hi Cara,

I'm hoping plan B isn't needed!  It would be bladder, bowel and vagina removal.  Which currently sounds quite horrific to me personally.

 

But I will cross that bridge when and if it happens.

Thanks for following the reassuranc.

 

Ami x

Greeni

Hi 

 

my recurrence came back after about a year or so , initially I had a radical hysterectomy but my ovarys were left , however the cancer came back to my left ovary , I had this removed and went on to have 5 weeks of chemo cisplatin and radiotherapy , im approaching 1 year clear now ( fingers crossed ) and have my next appointment on 5 th September ,

The treatment was gruelling for me personally lots of sickness but I think lots of ladies on here managed really well and like myself have had successful outcomes. 

Take care 

greeni 

Candissa19

Hi Greenie,

 

Great to hear that you have been cancer free for almost a year.  Quick question, did you loose any hair with cisplatin?

 

Thanks

Michelle584

I'm gutted to read your news ami!!

im really confused how it can come back after a hysterectomy? Where does it come back and how did you know? Was you poorly or was it found in a check up!? I assumed after a hysterectomy that would be that?

i am due to have my hysterectony on the 7th September and was really hoping to close the door on this chapte but seeing posts I'm starting to panic again :(

hope your ok sweetie xxx 

Michelle xx 

AmiLou

Hi Michelle,

I had some cysts post op so was having regular scans, never really felt great and on one scan there it was suddenly.

It's located in the vault of my vagina  the bladder.

I am the exception Michelle not the rule, so as the other ladies say don't stress about things too much (easier said than done)!

Good luck on the 7th

Ami xx

Tivoli
Tivoli's picture

Hi Michelle :-)

Try not to worry yourself, it really is pretty rare for this to recur after surgery. The vast majority of women are completely cured after their first treatment, whether that is surgery or chemo-radiation but it's great that in the unlikely event that it does return, there are other tools available with which to fight it.

Be lucky :-)
Tivoli

Girlwiththemostcake

So sorry to hear this. There are lots of positive stories on here from women who have had chemo-radiation.

I too am curious about how they picked this up and also how they picked up yours on your ovary Greeni?

I had a radical hysterectomy with ovary conservation almost two months ago. I was told there is a 5% recurrence rather, but that I wouldn't have any more scans as they are not useful. Do they pick it up by touch? 

29th April 2016 - colposcopy due to abnormal routine smear. CIN3 seen and LLETZ performed

13th May 2016 - cervical cancer diagnosed. Probable stage 1b1

19th May 2016 - MRI scan

27th May 2016 - MRI results confirm stage 1b1. Radical hysterectomy and bilateral lymph node dissection recommended - I requested to transfer care to a different hospital.

3rd June 2016 - consultant appointment and USS

6th June 2016 - EUA and CT scan

8th July 2016 - laparoscopic radical hysterectomy with ovary conservation and bilateral lymph node dissection

15th July 2016 - lymph nodes negative

Girlwiththemostcake

So sorry to hear this. There are lots of positive stories on here from women who have had chemo-radiation.

I too am curious about how they picked this up and also how they picked up yours on your ovary Greeni?

I had a radical hysterectomy with ovary conservation almost two months ago. I was told there is a 5% recurrence rather, but that I wouldn't have any more scans as they are not useful. Do they pick it up by touch? 

29th April 2016 - colposcopy due to abnormal routine smear. CIN3 seen and LLETZ performed

13th May 2016 - cervical cancer diagnosed. Probable stage 1b1

19th May 2016 - MRI scan

27th May 2016 - MRI results confirm stage 1b1. Radical hysterectomy and bilateral lymph node dissection recommended - I requested to transfer care to a different hospital.

3rd June 2016 - consultant appointment and USS

6th June 2016 - EUA and CT scan

8th July 2016 - laparoscopic radical hysterectomy with ovary conservation and bilateral lymph node dissection

15th July 2016 - lymph nodes negative

AmiLou

Hi

I had cysts post op, so have been having regular scans, which is how it was picked up so quickly.

I've not been right since the radical hysterectomy, as the tumour this time is affecting my ureter.  The kidney stent Hs helped with that.  

Just want the treatment to start so I can get rid of it and get on with my life xx

KatharineAnne

Hi AmiLou...my case sounds similar.  Had radical hysterectomy and adjuvant chemorads and brachytherapy (finished December) but nowhave tumours including one on ureter after having two all-clears.  Recovering from stents procedure as i type and mentally preparing for more, nastier chemo.  Locum GP reckoned i had sciatica but it was the tumours.  Great.

CD84

Hi Ami Lou,

A pelvic exenteration it's called...I had one 6 weeks ago. I count myself lucky to be alive. You're right in that it's pretty horrific but it was my best chance so had to grab it with both hands as strange as that sounds. 

Your chemo/radiation will fly by and hopefully you'll get through it without any troubles. The doctors will soon prescribe you medication if you were to have any issues...they keep a close eye on you. Sorry to hear it came back so quick but great that you still have the option of chemo/radiation. Good luck with it all :)

Love Cara xxx

 

Greeni

Hi 

with regards to the cisplatin , no I didn't loose my hair , I think with cisplatin the majority of people keep there hair .

The cyst on my ovary was found after a routine 12 month post hysterectomy CT scan , my oncology consultant said reaching 12 months is quite important so sent me off for a scan.  I never had any symptoms of the " cyst" and felt really well, I was told the cyst was large but looked OK and so was left nearly 3 months before they operated it was then it was identified as cervical cancer recurrence .  I have been told recurrence to the ovary is super rare , 1% of people this happens to. 

greeni 

xx 

Tivoli
Tivoli's picture

Hi Greeni :-)

Is that 1% of recurrences or 1% of Cervical Cancer patients do you know? It's odd though, I was thinking about this over the weekend, there are two kinds of cervical cancer; squamous and non-squamous. I know that some people get mets to the lungs and I know that lungs are made of squamous cells. It got me thinking, are women who have squamous cell cervical cancer more likely to get mets to the lungs and are adenocarcinoma patients more likely to get a recurrence in the ovaries? I'm not expecting you to know the answer to that but hoped somebody might be in a position to ask their consultant and let me know.

Cheers!
Tivoli

Jayneeeb
Jayneeeb's picture

Hi Tivioli My consultant said that my adenocarcinoma would most likely come back in the pelvis and not in the lungs etc despite it already beeing in my paraaortic nodes. So maybe the two different types spread differently. 

 

Jayne

Time for the really big girl pants now.

Tivoli
Tivoli's picture

Thanks Jayne, that seems to confirm my hypothesis :-)

TeresaF.

I'm traveling with next to no wifi, but just saw Cara checking in and wanted to say how nice it is hear from her.

Sorry to hijack Amilou's thread. 

As a tiny note to the discussion, when I was researching keeping my ovaries or not prior to my hysterectomy, I did read several articles that reported no connection between cervical and ovarian cancer. My own doctor said that breast/ovarian are linked, whereas the likelihood of developing ovarian cancer was not altered by a cervical cancer diagnosis. She mentioned pelvis, bladder, lungs as more likely.  I did find one article where doctors asserted that they had found one case of cervical cancer recurring in an ovary after a trachy, and they wrote about it like they'd found a unicorn.

None of which helps if you're the unicorn, but the patient in the study was treated with some kind of chemo/rad and was fine. 

Hope everyone is doing well. Love to Rosie if anyone sees her. Michelle - keep calm sweetie.

love t x

24 March 16  Annual smears up to date. First abnormal pap.

14 April 16  Cone biopsy plus D&C under GA. 

28 April 16 Staged 1A1. Microinvasive adenocarcinoma. Biopsy had removed  tumour, but CIN 2 in situ. Clear margins, clear uterus. Hysterectomy booked.

10 May 16  CT Scan and XRay clear - yay!

23 May 16 Simple hysterectomy, excluding ovaries

26 May 16 Biopsy of cervix revealed a skip lesion/further tumour ( 2mm x 6mm) higher up. Uterus clear. Still classed as 1a1 so treatment will be 6 monthly check ups.

1st June 16 PET scan clear. Yay!!

13 Dec 16 - first check up.  All good.  Yay!

10th May 17 - 2nd check up. All good. Yay!

Greeni

Hi

tivoli - Gyneacology consultant said 1% rate of recurrences are to the ovary .  pathology took some weeks to actually confirm it was CC recurrence comparing my original pathology the first time round to the ovary pathology , they said it was really difficult Hence why it took so long To comfirm it was CC recurrence and not ovarian cancer.  

Teresa - really interesting comments , good to hear the treatment worked .  

Because I've been told recurrence to the ovary is super rare , it is always in the back of mind what if they got it wrong and it was ovarian cancer and not recurrence , but that's just me being paranoid and my mind working overtime !! and I have to trust the professionals .  

Greeni xx 

Tivoli
Tivoli's picture

Many thanks Greeni and Teresa for joining in and helping to further my understanding. I remember reading ages ago on this forum some people opting for ovary removal to lessen the risk of recurrence and others opting to keep them because they are easy to remove if recurrence occurs. Odd then that it was even a consideration when in fact it's only a 1% unicorn. I suppose it must have something to do with the rate at which knowledge about this disease is increasing all the time.

Fear not Teresa, the thread was well and truly hijacked before you returned :-)

Be lucky :-)
Tivoli

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Cervical cancer