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Radical hysterectomy.

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EmmaBee
Radical hysterectomy.

Hi,

   I've recently been diagnosed with early stages cervical cancer. I'm due to have a Radical Hysterectomy and pelvic lymph node removal in 2 weeks time.

I would like to hear your own experiences of the surgery and recovery period or any advice anyone may have? I appreciate everyone has a different experience with surgery but any advice would be appreciated. 

I had a c-section 6 years ago which is really the only thing I could compare it to in regards to having to rest afterwards, no heavy lifting etc. 

Thanks in advance. 

Emma x

5/6/20 Saw doctor due to abnormal bleeding after intercourse. 22/06/20 Gynaecology appointment, had loop biopsy. Thought it was cervical erosion due to having children and being on the pill.

7/7/20 Biopsy results confirmed Cervical Cancer. Stage 1B1. (Never missed a smear test or never had any abnormal results).

20/7/20 MRI scan.

16/09/20 Radical Hysterectomy & lymph node removal. 

09/10/20 Histology results. Stage 1B1 grade 1. Surgery successful, no further treatment needed. 3 month check ups. 

FeelingTheFear

Hi Emma

Welcome to the club nobody wants to join! 

Im 11 weeks out from my RH now and doing really well.

If you do a search on the forum you will find a thread by lauriebeth entitled Radical Hysterectomy where a few of us posted our initial recovery experiences in quite some detail:

https://www.jostrust.org.uk/forum/cervical-cancer-–-treatment/radical-hysterectomy-9

Your recovery will feel different depending on whether you are having the open surgery, as we did, or the keyhole (laparoscopic) surgery. Also whether they are leaving the ovaries or removing them as well. So once your surgeon gives you the detail around the plan then let us know so we can try to give you the most relevant advice 

If you have any specific questions I dont mind trying to answer them, you can PM me if you like.

All the best xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

EmmaBee

Thank you for replying, I'm pleased to hear you're feeling better and recovering well. I'll be cut open for the surgery and the surgeon has said he will keep my ovaries (unless he finds something he shouldn't) so I don't go through early menopause as I'm only 34! 

Thanks for the advice regarding the link, I will have a read through. 

Take care x x

5/6/20 Saw doctor due to abnormal bleeding after intercourse. 22/06/20 Gynaecology appointment, had loop biopsy. Thought it was cervical erosion due to having children and being on the pill.

7/7/20 Biopsy results confirmed Cervical Cancer. Stage 1B1. (Never missed a smear test or never had any abnormal results).

20/7/20 MRI scan.

16/09/20 Radical Hysterectomy & lymph node removal. 

09/10/20 Histology results. Stage 1B1 grade 1. Surgery successful, no further treatment needed. 3 month check ups. 

FeelingTheFear

Hi Emma,

Thats the same open surgery as I had, and being 36, I got to keep my ovaries too. The best things i bought in prep for my surgery, in no particular order:

Big knickers, the belly button warming 100% cotton type, in the next size up. Pack of 5 from m&s (I actually got 2 packs as these were the only pants I could wear for a few weeks) 

Long t-shirt nightie and loose maxi dress, comfy wire free bra 

A long charger cable for your phone in case the plug is in an awkward spot in hospital or in your resting nest when you get home

Cushtie microbead cushion off amazon (to hold against your tummy when walking, laughing, coughing, sneezing, getting out of a chair)

Lactulose (you may be on opioid pain relief and you do not want to get constipated) 

Nice lip balm & nice hand cream 

Water bottle u can sip from (no spill type) 

A largish make up bag to hold all my necessities in so I could easily transport all my stuff from one resting place to the next (tablets, lipbalm, phone, headphones, wipes, etc) 

paracetamol and ibuprofen as the hospital sent me home with only enough for about 3 days. They also only gave me only 2 pairs of TED stocking which I had to wear every day for 28 days, so once I got home I ordered more in my size off ebay 

There is an ebook called SMILE by Caroline Williams which I downloaded on kindle and it is a good read of her account of the surgery and recovery and pretty much consistent with my own experience.

Headspace app subscription- free trial is often available!

Seems like a lot but probably you already have half of these items at home already! 

Hope this helps with the practical side of things, 

Xxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

EmmaBee

Thank you so much, i really appreciate all of the advice. It's such a whirlwind isn't it but I'm trying to keep positive about it all. It's nice to hear other people's experiences, hope you're feeling ok now after your surgery. Xx 

5/6/20 Saw doctor due to abnormal bleeding after intercourse. 22/06/20 Gynaecology appointment, had loop biopsy. Thought it was cervical erosion due to having children and being on the pill.

7/7/20 Biopsy results confirmed Cervical Cancer. Stage 1B1. (Never missed a smear test or never had any abnormal results).

20/7/20 MRI scan.

16/09/20 Radical Hysterectomy & lymph node removal. 

09/10/20 Histology results. Stage 1B1 grade 1. Surgery successful, no further treatment needed. 3 month check ups. 

FeelingTheFear

It is a whirlwind for sure and it all happens so quickly (thankfully). You just strap yourself into the rollercoaster and the doctors will deal with the rest and you'll emerge the other side, slightly windswept and a bit wobbly but amazed that you got through it ....

I'm really grateful that overall I've had a relatively straightforward recovery, I am very much appreciating small blessings like every day my husband and I go for a walk in the evening. I was really strict with doing as much walking as I could, building up day by day from the time I got home and I think this does help both physically and mentally xXx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

LaurieBeth

Hello!  I am the LaurieBeth who my surgery buddy FeelingTheFear was mentioning.  I am at week 12 post RH and am back at work and feeling probably about 90 percent these days. The above posts really have everything covered.  I also bought a little rolling table that I could move from my bed to my recliner, etc, and some wedge pillows to help prop and arrange myself in bed.  Sleeping the first few weeks is not so easy, and getting up from bed is an acrobatic feat,  The pillows helped.  

 

The surgery was actually not as horrible as I had imagined, but you will have a rough couple of days of up front.  The recovery is slow.  Little improvements each day for a good long while.  But at 12 weeks it all seems a bit like a dream.

Just gear up your patience and like FtF said, start walking as soon as you can and keep at it.  In the end it will help you heal more quickly even if it is slow going and unpleasant at first.

Feel free to PM me for specific questions or support!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

EmmaBee

Thank you for your advice Lauriebeth, pleased to hear you're now feeling better and back at work. I just think for me it's the not knowing that I'm overthinking about but reading all the posts on here have helped so much. I'm worried about being put to sleep but I keep thinking positively and need the surgery to be cancer free so will do anything that it takes. 

Thanks again for your reply xx 

5/6/20 Saw doctor due to abnormal bleeding after intercourse. 22/06/20 Gynaecology appointment, had loop biopsy. Thought it was cervical erosion due to having children and being on the pill.

7/7/20 Biopsy results confirmed Cervical Cancer. Stage 1B1. (Never missed a smear test or never had any abnormal results).

20/7/20 MRI scan.

16/09/20 Radical Hysterectomy & lymph node removal. 

09/10/20 Histology results. Stage 1B1 grade 1. Surgery successful, no further treatment needed. 3 month check ups. 

NightFury

Hi Emma! 

I am so sorry you found yourself in this position but it's great you end up here! The ladies here are amazing and the forum is very informative.

I had radical hysterectomy done last Wednesday altough mine was laparoscopic (they told me to prepare for open but on the day decided that I'd be a perfect candidate for the keyhole surgery) and FeelingTheFear has been my guide and support - I can not thank her enough! She talked me right through everything so I knew exactly step by step what to be prepared for.

The fear of the unknown been killing me  so knowing what will happed made my life so much enjoyable (well as much as it could be with the cc diagnosis). 

The list above is amazing and cushite is my best friend! 

I got prepared for watchig Netflix and reading books but none of this happened. It is uncomfortable to laugh ;) and the only thing I could do was sleep! 

I am still inpatient as have some bladder issues but hopeing to be discharged tomorrow. 

If you have any question feel free to pm me however our surgeries differ in the recovery.

I am sure all will go smoothly and just try to enjoy the days before the operation - spoil yourself and do nice things, this will lift the spirit! 

Lots of love 

Xx

Lisa_xox

Hi Emma

So im 3.5 weeks post RH and FeelingtheFear and LaurieBeth have been great support in confirming everything I was going through was normal. I was so prepared for the uncomfortable feelings and the pain from the procedure but it was the little nigglely bits that I didn't prepare for....ie:days on end sat on a toilet knowing there's a bowel movement in there somewhere but you ain't got the strength in ya tummy to do naff all about it haha!! 

All the comments on here have pretty much covered everything, and believe it when its said everyday does get better, slow and steady wins the race.

My own little life saver may I add has been my V shaped pillow....its seen me through many a dodgy position these past few weeks and made it possible for me to get pretty decent nights sleep from coming back home.

Like the other ladies im happy for you to message me anytime if you need any advice, reasurrence or support

Lisa xxx

27.05.2020 attended nurse apt due to unable to feel coil strings and slightly heavier than normal discharge

03.06.2020 colposcopy apt

10.06.2020 apt made for results (welcome to cc club)

15.06.2020 MRI scan

18.06.2020 MDT stage 1b2

25.06.2020 apt to meet surgeon and discuss treatment

15.07.2020 radical hysterectomy 

06.08.2020 no further treatment needed, follow up in 3 months

 

EmmaBee

Sorry for my late reply Lisa and NightFury. I've had a busy weekend celebrating my wedding anniversary and haven't had chance to look at my messages.

Thank you both for replying, I'm pleased to hear you're both recovering well from your surgery. As far as I'm aware I'll be getting cut open as there hasn't been any mention of keyhole. I've taken all this advice on board from all you lovely ladies and feeling at ease about it all now (after a few wobbles!) I've got lots of things to keep me occupied in hospital, plenty of books and magazines but to be honest I think I'll just want to sleep. 

Take care of yourselves 

Emma xx

 

5/6/20 Saw doctor due to abnormal bleeding after intercourse. 22/06/20 Gynaecology appointment, had loop biopsy. Thought it was cervical erosion due to having children and being on the pill.

7/7/20 Biopsy results confirmed Cervical Cancer. Stage 1B1. (Never missed a smear test or never had any abnormal results).

20/7/20 MRI scan.

16/09/20 Radical Hysterectomy & lymph node removal. 

09/10/20 Histology results. Stage 1B1 grade 1. Surgery successful, no further treatment needed. 3 month check ups. 

More Information

Treatments for cervical cancer