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Decide between RH or chemorads

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noodlesdoodles
Decide between RH or chemorads

Went for results on 16th expecting staging and treatment plan and for the wait to be over.....

Well..... thankfully it’s treatable. I am so very grateful for that. 

I am a ‘complex case’ and have to decide between RH or chemorads. Clinically 2B, radiologically 1B1. They had a long discussion at MTD about me and decided to give me the choice. 

At EUA the Dr said he thought it had gone into the perimetrium as felt a thickening so chemorads would be treatment. The scans show no spread into perimetrium,so radiologist saying RH.

They want to avoid dual treatment. 

How do I make that choice?I want to make sure it does not spread or reoccur. 

Anyone else gone through this?

-

09.05.19 smear

12.06.19 Colposcopy and LETZ -told likely cancer

25.06.19 cc confirmed

30.06.19 CT scan

02.07.19 MRI

05.07.19 EUA - into perimetrium

10.07.19 PET scan

16.07.19 staging 2B clinically/ 1B1 radiologically. Treatment to be decided- RH or chemorads

Dee78

Hi Noodlesdoodles,

Just wanted to wish you the best if luck in making your decision, it’s a tough choice.  Not sure what I would do in your situation.

I’m a complex case to but for an entirely different reason.  I’m staged at 1B1 so was originally told I needed a RH however surgeon wasnt convinced its this best option as I have a weight issue so it went back through MDT.  I was praying to go down the radio route as absolutely petrified of surgery however the decision has been made that a simple hysterectomy is best treatment option and I am borderline 1a2/1b1.  I would say I’m not entirely happy with this decision as I think I will cope better with radio however was advised the long term effects are to be taken into consideration and surgery is best where possible.  Like you I don’t want to have the surgery to the have to have further treatment afterwards.  

I think both treatment have there pros and cons and you have to decide what is best for you!  This whole situation sucks and is very stressful.

Good luck with whatever you decide and go kick it’s butt!! Thinking of you x

 

1st April - colposcopy and lletz

13 May - told cc

29 May - CT and MRI

12 June - staged 1a2, need another lletz to confirm treatment

24 June - 2nd LLETZ, awaiting confirmation of treatment.  Restaged 1b1.

3 Sept - laparoscopic modified radical hysterectomy(retained1 ovary)

19 Sept - pathology confirmed no lymph node involvement and NED, no further treatment required.  3 month follow ups...

Mariewendy79
Mariewendy79's picture

Only you can make that decision, and it’s horrible situation to be in just make sure you get all the info on each senario before making it.

I know if it was me I would take surgery over radiation any day. Unfortunately for me I never got the chance to choose as mine spread to far for surgery.

You can recover relatively quickly from surgery with least side effects. Damage from radiotherapy is a lot worse and can last for years.

good look in what ever you decide

xx

 

15th Jan 2019 - Abnormal smear

28th Jan 2019 - Colposcopy LLETZ biopsy CC suspected

4th Feb 2019 - MRI scan

7th Feb 2019 - Biopsy + MRI results cervical cancer confirmed 

21 Feb 2019 - PET scan. Oncologist meeting, stage 3b CC lymph involvement

1st March 2019 - Ureteric stent op

20th March 2019 - Start treatment, 25 radiotherapy, 5 chemo/Cisplatin, 3 weekly brachytherapy 

5th Aug 2019 - MRI scan

7th Aug 2019 - PET/CT scan

AWAITING RESULTS!’

 

emmz13

Hey noodles,

wow what a decision! I don’t envy you. 

I guess there are definite advantages and disadvantages to both treatments but if they want to avoid a dual treatment I imagine this could only be achieved with Chemorads as surgery has more potential for narrow margins or something unexpected in a lymph node that was too small for the PET scan. 

If it was my choice I would pick surgery because you always have the options of chemorads afterwards even if they would prefer to avoid this but my understanding (if I’ve got this wrong I’m sorry) is that once you’ve had chemorads any surgery would potentially be far more extreme PE due to the damage caused by the radiotherapy.

No matter what you choose you will kick the **** out of this, and soon be out the other side. 

Stay positive you know your own body and mind and will make the best decision. 

Much love,

emma xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Lotty9000

Hi noodlesdoodles

What a tough decision! It’s really hard when you are given a choice regarding treatment. My situation was different however I have been given the option of surgery or conservative management (early cc).

It difficult to decide in terms of over treating and lasting effects. I believe radiotherapy can have some pretty horrible and lasting side effects but I see you’re keen to avoid dual treatment. RH also has risks but potentially easier risks to deal with and if the worst case happens and RH didn’t give clear margins you would have the option of radiotherapy?

Good luck and you will make the right choice for you xxx

 

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Tes309

Hi Noodlesdoodles,

You have a diifficult decision to make and I feel for you. Speaking from someone who has had both treatments, I would always prefer not to be over treated.  This is despite having a recurrence (this could have happened which ever treatment I had the first time).  

I had a RH 6 years ago (1b1) and unfortunately had a recurrence this year. I’ve recovered well from both treatments but it’s early days on the chemo rads and there can be late side effects. The RH was a really quick recovery for me.  

If I’d have had the chemo rads in the first instance I wouldn’t have had the option to have them again for my recurrence. I had always thought of chemo rads as back up armour should I need it in the future. Unfortunately I needed it but was relieved I had that option. 

So that’s just another perspective for you to think about. 

Best of luck in your decision. 

 

Tess xx 

 

27/04/13 Smear severe Dyskaryosis.14/05/13 Colposcopy 24/05/13MRI Scan 31/05/13 diag CC stage 1B1 grade 2 Adenocarcinoma, Cold knife biospy under GA 19/06/13 CT scan and blood test Rad hyst booked for 11/07/2013. Histology found microscopic node involvement.  No further treatment required / wanted. All clear 05/08/2013. March 2019 recurrence, starting chemo rads 15-04-2019

September 2019
Recurrence, now palliative

noodlesdoodles

Thank you so much for all of your replies and support. Knowing I am not on my own with any of this makes such a difference. Xx

Petesdragon
Petesdragon's picture

Can I just add that I got a second cancer 20 years after the first caused by the radiotherapy.  I think that might happen more as more people survive for long.periods.

I personally would take a chance on the surgery as radiotherapy damage gets worse over time. If you end up overtreated at least you tried. If you start off with chemorads and have awful radiation effects you will always regret not trying.

But as the others said, only you can decide!

Karen 

i

 

    • 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. 

Flower Power

I thought about not answering this one it is such a huge decision only you can make.   However,  after reading Karen's post I so agree with her.  If you go for chemo/rads.  you can only have this once in you lifetime with no chance of surgery after the rads.   With the surgery you can have chemo/rads  at a later time if you have recurrance or they feel they have not got all the cancer.    Good Luck XXX

Flower Power

noodlesdoodles

Thanks everyone for your thoughts. It’s certainly mind boggling and I have been back and forth! I have, since they gave me the choice, leant more towards hysterectomy. More so because if it were to reoccur,I’d want a fighting chance to be there for my child.Regardless, I am going to fight it with all I’ve got!

I take everything on board,but ultimately always go with my gut. 

Thanks again for all of your support xx

noodlesdoodles

Well I went to see the consultant and she could not have been lovelier. I told her I was leaning towards the hysterectomy,which she said was a good way forward. This is because she will basically check it all out and based on what she finds,do a hysterectomy or not. She will do another EUA,  check things out with a camera and / or may remove a node via keyhole and do a biopsy while I’m asleep to check node involvement. She will only do a hysterectomy if she is sure it’s the right thing to do.

I totally trust her and know she will do what is best for me so am in really good hands. RH booked for 16th.

Thanks for all your support - I really did need it xx

09.05.19 Smear

12.06.19 Colposcopy and LETZ -told likely cancer

25.06.19 cc confirmed

30.06.19 CT scan

02.07.19 MRI

05.07.19 EUA - into perimetrium

10.07.19 PET scan

16.07.19 staging 2B clinically/ 1B1 radiologically. Treatment to be decided- RH or chemorads

emmz13

Hey Noodles,

Your consultant seems lovely and incredibly reassuring. I’m so pleased that they are doing everything possible to ensure the best treatment for you. 

Good luck for the 16th you’re one step closer to beating this!! I will be thinking of you xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Petesdragon
Petesdragon's picture

Yes, good luck indeed. Fantastic you have a good relationship. I have had fantastic relationships through both of my cancer battles and I am convinced it's a major reason I am still here.

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. 

Lotty9000

Good luck noodlesdoodles! I’m glad you’ve got a great consultant and have a great relationship with them xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

noodlesdoodles

Thanks everyone- I am as ready as I’ll ever be for next week. Ready to kick it’s butt !! Xx

emmz13

Noodles You deffo got this!! That cancer isn’t gonna know what hit it next week! Your support has been fantastic and I will sending a million happy, healthy, good vibes your way! Good luck and all the best. 

Love Emma xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

noodlesdoodles

Hi ladies, 

just an update for you all as you were so kind to post and support me when I needed it the most.

I finally had the op 21st Aug with a completely different surgical team!! It was like 2nd opinion and they staged me at 2B too at EUA. Then they had a good look inside and found that it had not spread into the parametrium. So I had the radical hysterectomy and nodes removed.

Histology report came back with no tumour left and nothing in my nodes. I’ve kicked it’s butt!!

Thank you for all of your support- I really  could not have done this journey without the support of the fabulous women here. I know some of you are still going through it now and I wish you all the best and will support you as much as I can.

 

 

Lotty9000

Congratulations noodlesdoodles, that’s brilliant news.

xxxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

emmz13

Noodles!!! 

That is just the best news it’s brought such an enormous smile to my face. Well done you, I knew you’d kick arse!! 

Enjoy the celebrations and massive hugs and tonnes of love you amazing lady! 

Love emma xxxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

More Information

Treatments for cervical cancer