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Don’t know what to think :(

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Niamh91
Niamh91's picture
Don’t know what to think :(

hi everyone

I was diagnosed in September 2017 with cervical cancer 1b2 and had 25 rads 3 chemo and 2 beach.

every couple of months after treatment I went for my pelvis mri scan and always came back as NED.

i had a scan in December 2018 and got the results today and he said there is scar tissue but there is inflammation that he wants me to have a CT scan to double check. He said it’s a small chance it could be cancer back :(

has anyone every experienced this I’m so scared right now

 

thanks xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

SoozeH

Don't panic. Inflammation after the treatment you have had is quite common. Even if it is back there are options. It's good that they are keeping a close eye on you. Good luck with your scan x

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Niamh91
Niamh91's picture

Thank you for replying SoozeH

I just don’t understand why there would be inflammation now a year after treatment ended? I’m so scared that if it is back there’s nothing more they can do. I’m so worried about this scan now :(

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

SoozeH

Radiation is the gift that keeps on giving. Unfortunately you can have problems from that for years.

It's natural to be scared but there will be something they can do if the scan shows recurrence.

Mine came back and the treatment for me was extreme, but I'm still here, dancing the night away and going to music festivals.

The waiting time is the worst, is your scan booked already ? Keep us updated.

x Sue

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Niamh91
Niamh91's picture

I was reading into it last night and it said about inflammation can come back up to 2 years after treatment so fingers crossed it’s nothing more. The doctor said he isn’t overly worried but has to do a full top to toe scan where they inject the dye into me to see if anything lights up.

no don’t the date yet but should hopefully receive that in the post this week he said so I will let you know .

thank you xxx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Niamh91
Niamh91's picture

Got my scan today it’s this Friday so fingers crossed! xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

Hi Niamh,

Weeping Willow is in exact same position as you do.may be worth contacting her for mutual support.

Good luck.on Friday,

Karen xx

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Petesdragon
Petesdragon's picture

Hi Niamh,

Weeping Willow is in exact same position as you do.may be worth contacting her for mutual support.

Good luck.on Friday,

Karen xx

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Weepingwillow

Hi Niamh

I am sorry to hear of your worry. Karen has kindly suggested that we make contact as I am in a similar situation and hope I can offer you some support.

Whilst I too am playing the waiting game which really is no fun as Sue says Inflammation/ Scar tissue I am told can really play havoc on scans and cause the need for further investigations, which is worrying yet reassuring that we are getting looked after so well.

The chances of scar tissue I believe is very high and hope you will get that confirmed but even if it is the very small chance mentioned that it is cancer they have discussed surgical options with me - still with curative intent - I have had amazing support and information on this so please don’t feel they can do nothing more as I have learnt they most certainly can and with the chance of really good results.

I wish you the best of luck for Friday, do let us know how you get on x

 

Niamh91
Niamh91's picture

Thanks for reaching out weeping willow. They haven’t discussed any surgical options with me yet. I was reading up on pelvis radiation disease aswell do you think that could be a possibility? 

Did you have a PET scan where they inject the radioactive into you? That’s what I have Friday and then results on the 4th feb.

what surgical options did they discuss with you?

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

The PET scan will be to see whether the mass  is very active and possibly cancer and also to see whether it lights up anywhere else  outside of the pelvis. Results are generally reasonably quick.

The surgical options will depend on your previous treatment. Have you already had a hysterectomy?  You can't have the same area irradiated twice so that limits options. 

You need to.know first if this is cancer and what options are available to you according to the scan. They may be able to try what they call a salvage hysterectomy. However unless it's very small and assuming you have already had radiotherapy they may offer Total Pelvic Exenteration. This is what Weeping Willow may be offered if her PET is favourable and I had this done one year ago. But please don't panic, it hasn't come to this yet. Let's see what the scan brings.

Karen x

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Niamh91
Niamh91's picture

This is what I’m scared of the pelvic exenteration. I haven’t had any symptoms of feeling unwell in fact I’ve been feeling better as the months go on.

i just don’t understand how my scans have been fine and now all of a sudden they can see scar tissue and inflammation. Does that mean the treatment was still working up to 12 months after treatment? I feel like I can’t cope with this and absolutely dreading my results on the 4th Feb :( 

i had 25 radiotherapy, 3 chemo and 2 brachy. I didn’t have a hysterectomy. Would chemo still be an option if it was back?

thanks for replying xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

If it was back, and please don't forget this is an if,,there is still a real possibility that it's not, chemo.options will be avalable to you. However the chemo options are likely to be only considered palliative. The chemo will shrink the tumours and there have been some excellent results for some ladies on Jo's Trust but it virtually always comes back. Chemo will be offered if you have cancer that i is spread  outside of the pelvis but you could choose it yourself if you don't want surgery. 

There have been a few that have been offered a hysterectomy if the cancer is very small. However if it's started to grow into other organs like the vagina then that may not be successful. The Total Pelvic Exenteration is the option that offers the potential of a cure. At first it's the most dreadful shock to hear it but as time moves on you realise that the other options don't offer much hope and you start praying you can have the exenteration. Weeping Willow will know exactly what I mean.

The operation is a challenging thing to go through and recovery is very long. However, you do recover in time and you adjust very well to your new body. There are several of us that have had it done in the last 12 months or so  and we are all doing brilliantly. I had it done Christmas 2017 and I have been on holiday five times since! 

I am only telling you about the exenteration because I know you know about it and it's on your mind. It hasn't come to this point yet so try to put thoughts of it aside. However if it's on the table for you, it is doable and can be very successful. 

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Niamh91
Niamh91's picture

Thank you Karen. You really have been a big support. Just need to get this scan over and done with now tomorrow and wait for the results. That’s the worst part I think

Niamh x

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

The scan is horribly stressful. I was waiting for my scan at Bonfire night 2017. Then when I went to the fireworks in 2018 it brought it all back and I felt my heart really pounding and I felt really low for several days. It was like reliving a war! It made me realise that  scans go beyond "scanxiety" into the realms of real trauma. Don't hesitate to sound off here or message any of us. We honestly know what it's like. In fact I have a follow up scan myself on Monday and right now I am like a bad tempered old bear.

Karen x 

 

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Niamh91
Niamh91's picture

Aww good luck with your scan! My scan is at 1pm today so I can’t eat for 6 hours prior. Starving! 

I’m just keeping positive there could be a number of other things it could be and not the dreaded c word!

All I have to think is that I can’t change anything now it is what it is I have to deal with it

Niamh xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

Good luck with the scan and have a good feed afterwards! You deserve it.

Whatever you have  to deal with you won't be alone.

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Niamh91
Niamh91's picture

Scan done! Just a waiting game now for the results

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

SoozeH

Fingers crossed for you. The waiting time is the worst. Do you have a follow up appointment yet ?

Try and keep yourself busy doing things that you love .

x Sue

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Niamh91
Niamh91's picture

Yes the 4th Feb but that’s 3 weeks away. The hospital said Christie’s should have my results though next week so hopefully they phone me sooner to get me in for the results 

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Petesdragon
Petesdragon's picture

Yes, that's far too long away. Don't let them sit on them! I think you and weeping willow may have geographical location  in common.

Karen 

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Philleepa

I hope this week goes really quickly for you x 

I may have a similar geographical location to you too as I was treated at that hospital xxx

twhite123

I was treated at that hospital a week today. They were amazing and really didn’t sit on things. I went in for my op in 2 days notice. I wish you both the very best. And that the outcome is much better than you think.    Hugs. X

T WHITE

Niamh91
Niamh91's picture

Thanks for replying everyone.

I live in Manchester and have been treated by Christie’s since October 2017. My scan was at saint Mary’s hospital though this time around. Not sure if Christie’s didn’t have any availability but at least it’s done now 

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

jess_38

Any update? I'm only a few months out of treatment, so very curious about everyone's experiences on here...

Hope all was ok and you're doing well...and if that wasn't the case, sending positive vibes!

Niamh91
Niamh91's picture

Hi Jess

No not yet as I only had the scan on Friday. Christie’s should have my results this week. I’m just keeping positive :)

will let you know when I hear something 

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Niamh91
Niamh91's picture

Hi everyone!

i got my scan results today. ALL CLEAR! Thought I’d share the news because I know I’m always looking for positive stories to get me through this! 

They said the area around my cervix is still very inflamed but the PET scan showed no cancer

 

laughing Xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Philleepa

So very pleased for you niamh x 

I'm in North Manchester and was treated at your hospital 3 years ago. They discharged me in July last year - earlier than usual but they agreed as they no longer do scans or internals. It was so stressful going there for follow up appointments x

Petesdragon
Petesdragon's picture

Fantastic news Niamh. Really delighted for you. What a fabulous year you will have! I hope Weeping Willow has the same outcome!

Karen x 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

SoozeH

What a great result. I'm so pleased for you. 

May 2017 Diagnosed Adenosquamous Stage 2b

July and August 5 Citplastin and 32 radiotherapy

November 3 month Mri

January 2018 Mri result cervical tumour gone but still enlaged lymph node

April 2018. Mri result. Lymph node shrinking but growth where cancer was.

May 21st 2018 Total Pelvic Exenteration

Jan 30th 2019 Bastard is back !

Weepingwillow

Excellent news! Thank you for sharing it really does help to hear good news updates. Enjoy that all clear x

Niamh91
Niamh91's picture

Thank You Everyone!

xx

25th August 17 - 1st Smear 

7th Sept 17 - Colposcopy 

15th Sept 17 - MRI Scan

22nd Sept 17 - Diagnosed CC Stage 1b2 no lymph node involvement 

23rd Oct 17 - Started 25 Radiotherapy, 3 Chemo and 2 Brachytherapy

5th Dec 17 - Treatment Finished. 

28th Feb 18 - MRI Scan

12th Mar 18 - All Clear NED :)

8th June 18 - MRI scan

20th June 18 - All clear NED

19th December 2018 - MRI scan

7th January 2018 - inflammation on scan so being referred for a PET scan

 

 

Idyll

Great news ,so happy for you.

Love,

Idyll

FreeFlowingFlossie

I was so pleased to catch up on this one! Great news..

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Moving forward from a cancer diagnosis