Help and advice please x

Hello
I wondered if anyone would be able to help me with something please ?
I have seen the consultant today and have been told I have stage 1b1 squamous carcinoma.
1.4cm x 6mm I’m sure that’s the size they said…
My MRI doesn’t appear to show any spread and they think it is contained to my cervix, but won’t know for sure until they’ve removed and sent for testing…
I’ve been told I will be having radical hysterectomy,the incision from belly button down, I had a c section in the past and from reading on here I thought they would open that scar up again, so was a bit shocked at that, I’m having pelvic lymph node removal, and tissues surrounding the area…he said I can chose to keep my ovaries but they will take fallopian tubes…he said I can decide later wether I want to keep ovaries or not .
I just wondered if anyone else had been given this option ?
Waiting for the date for RH now and just have to pray it isn’t anywhere else .such an awful stressful, mentally draining time.i still don’t think I’ve really accepted it’s happening to me really x

Hi Lynzibelle,

The grade and type of cancer sounds the same as mine (I can’t rmember the exact size of my tumour but it was similar I think) and I’ve just been given the 5 year all clear so feel free to look back on my posts from back then.

I wasn’t given the option of ovary removal - my consultant said that she felt the benefits of keeping them outweighed the risks so I kept them. How old are you? I expect your age might make a difference to the advice on whether to keep them or not. I was told that women who have a hysterectomy but keep their ovaries enter the menopause on average a year earlier than they would have otherwise. I was 43 when I had my surgery and am now 48.

I’ve just realised that you said they plan to do an abdominal hysterectomy. Do you know why they are doing this rather than laparoscopic? I’d definietely ask about the options if I were you as the recovery from laparoscopic surgery is easier and scarring is minimal.

Hello and thank you for your reply I really appreciate it.
5 years all clear !That’s so amazing to hear and gives me some hope as all the thoughts going round in my head are awful and I haven’t said them to anyone as I’m trying to be strong and not negative.
…I’m 44 . he said they don’t do them that way now but I can’t remember the reason, I ended up bursting into tears so I’ve forgot quite a bit of what was said .the nurse wrote some stuff down for me so that was good of her.
I was told I’d be told a date for the RH but they said they don’t know it yet so I was really disappointed about that. I just want it done now even though I’m scared to have a GA. I Won’t be able to have any visitors and he said I’ll be in around 5 days . I also have to isolate for 14 days before hand x

How do I look at your old posts ?x

If you click on my name it enlarges it - click on the enlarged name and it should show you the topics I’ve posted on and if you click on that it should take you to the post.

Covid certainly adds another dimension to any hospital treatment. Not having visitors is hard. I’d give them a ring (were you allocated a nurse? If not just call the hospital and ask for someone to call you back) and ask to chat things over. It’s really hard to take everything in at the appointments. I usually took someone with me and even then I found it hard to remember everything that had been said.

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Abdominal hysterectomies have a slightly better cure rate for cervical cancer than laparoscopic ones. I don’t think that information was established when I had my keyhole (robot assisted) op in 2017.

x

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Interesting. I had my laparoscopic hysterectomy in 2016. I think I’m kind of glad that evidence wasn’t around at the time!

Hello again.
Could you please help with advice on what to take to the hospital for after the RH.
I’m having my abdominally, I’m sure I read something about support knickers but I can’t seem to find it now.
I’m also terrified of this operation, I spoke with the nurse today and she said I’ll get the date but the end of this week. I asked how long it takes and she said 4 hours …just keep imaging awful things like I won’t wake up from the GA and I should write letters to my hubby and children in case…
I really need to get a more positive head on, I’ve been very weepy today but I managed to get the kids off to school first and sorted myself out a bit for when they got home…I’m usually a very positive person and felt like I was coping quite well, then this black cloud kicked in yesterday and been worse today.
I’m sure I wanted to ask something else too but I’ve forgotten now.
Oh, did anyone know that they had to have radio / chemo following the RH or does no one know until the histology has come back ?
X

I had laparoscopic surgery so I’m proabably not the best person to advise what to take to the hospital. I was only in for 1 night then sent home with an indwelling catheter which was a surprise to me - luckily I had loose trousers so there was plently of room to accommodate the catheter tube and the catheter bag which was attached to my leg with an elastic strap,

The plan was that the hysterectomy would cure my cancer but my post-op histology results weren’t great so I was advised to have chemo-radiotherapy afterwards.

x

Hi and thank you for your reply .
How long did it take to get your histology result ?I imagine the wait must be horrendous!
How long did the additional therapies go on for and how did you find it affected you ?
I’m really worried about the results and having to have further treatment, but I’m just trying to focus on one thing at a time,so the RH first…but it’s so hard,I find my mind wandering and imagining allsorts of things.
I’ve just found out my op will be on the 29th this month. I now have to isolate for 14 days and have my pre op this Friday.

Hi Lynzibelle

Just checked my log book which I started when I was diagnosed with cc in 2017: I got my post op histology results at my first follow up appointment which was 18 days after my RH.

My nurse specialist had made a big thing about the medical team aiming to get a cure with just one type of treatment so I didn’t worry too much and was quietly confident all would be well so it was quite a shock when I was advised I needed further treatment.

The additional therapies took place over roughly 5.5 weeks: chemo once a week, external radiotherapy 5 times a week then finally 2 sessions of brachytherapy. I got increasingly tired during the treatment, felt nauseous with the chemo (the anti-emetics were pretty effective and I was never actually sick) and got a lot of diarrhoea from the radiotherapy. I also lost my appetite and became underweight so I was prescribed nutritional drinks which helped a lot. But everyone’s different; I got fairly severe side effects yet some women manage to carry on much as usual throughout treatment.

It can be difficult not to fear worst case scenarios; I coped mainly by keeping busy.

Hope all goes as well as possible for you.

x

Hi jazza
Thank you again for your reply.
They have told me that they don’t know if I’ll need additional therapies until after the histology results are back and the word cure hasn’t been used for me.
They’ve told me that from the MRI it doesn’t appear that there is any C in the lymph nodes and it appears to be contained to the cervix, but said they do sometimes get surprises when they get in to do the operation,so they’ve already planted the seed that additional therapies may be required…
How long after your RH was it until you could begin the RT & CT ?
I’m really worried about the GA and the op as they’ve told me it takes 4 hours, the thought of the operation is making me very anxious and scared but then I keep thinking I’m being soft and I should be glad I’m having it to (hopefully)get rid of the C,and that people have these operations every day,but I can’t shake off this fear, it’s constantly there.
I had a C section with my son 10 years ago, so have had surgery and have a bit of an idea of what it might be like afterwards, but I was awake throughout, and it didn’t take so long.
I was hoping it might be sooner then I don’t have as long to wait and worry but I have to isolate for 14 days.
Also I have a close family wedding end of August, would you think I’d be fit to go after 4 weeks ?
My daughter is a flower girl,and the wedding has been re arranged a couple of times due to covid, I’d be really sad to miss it
X

Hi Lynzibelle

My trusty log book tells me my CT/RT started 7 weeks after my RH. I don’t know what the minimum interval might be.

I really couldn’t say whether you’ll be OK to attend the wedding but I would guess there’s a reasonable chance you might be able to. Maybe one of the ladies who’s had an open RH could give you a better idea.

I’ve had several GAs throughout my life and I was impressed how well I felt after the one I had for my RH. I think GAs must have come a long way since the one I had about 30 years previously, for a very minor op, which seemed to take a month to leave my system.

Have to say I’ve never really thought about how long my RH took - guess I must have blocked the thought.

Best wishes

x

Hi again jazza
Thanks again for your reply
I wondered if you had a PET scan ? I’ve seen quite a few posts in here from ladies that did, I wasn’t offered one.
Spoke to my CNS nurse today but forgot to enquire about that…I’ll ask her next time I speak to her.
Thanks
X

Hi hope your op goes well, I got my results back 3 weeks after op I didn’t have to have any further treatment just regular check ups Iv got my 3 month check up 9th August with is a little later than it should have been I think my op was 24th March. I felt a bit better mobility wise after about 4 weeks , but still of work 4 months down the line as we were trying for a baby when I was told I had cervical cancer so not done my mental health much good.
I’m sure everything will go well for you xx

Hiya and thank you for your reply.
That’s amazing news that you didn’t need any further treatment! !
Was your surgery a RH? And done abdominally ?.
I have a close family members wedding 4 weeks after surgery which I’m really hoping to be able to go to ,:crossed_fingers: I don’t want to be up dancing but I would like to be able to go.
That must have been so difficult for you,dealing with the diagnosis,surgery and everything else and the fact you were trying for a baby. I really hope you start to feel better mentally soon x

Hello Lynzibelle,

I really feel for you, it doesn’t feel real at all does it. I don’t think I took on board what was happening until after the whole thing - I was just going into autopilot and doing what needed to be done.

I was diagnosed with 1b2 adenocarcinoma 10 months ago and I had the EXACT same treatment suggestion as you have received. I too had a tumour that was limited to the cervix with no sign of spreading. I had a radical hysterectomy, lymph node removal, ovaries removed and a vertical incision. Like you, the scar and the ovary removal was left with me to decide. Here’s my experience and why I reached my decision in case it helps you.

  1. I was told that open surgery was recommended rather than laparoscopic because recent studies, that took place 18 months before I was diagnosed, have shown a significant increase in morbidity rates for women that have had a radical hysterectomy for cervical cancer, at this stage, laparoscopically when compared with patients who had open surgery. I would imagine this is why you are being advised to have open surgery. You can read further information here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7396529/

  2. I was also advised to have a vertical incision rather than a horizontal one. My consultant advised that this was how he was trained and it means they can increase the scar if there are any issues found. He also said it was less likely to result in an overhang that women often get with C section. After doing my own research I decided to go with my consultant’s recommendation as a vertical incision doesn’t require cutting through the abdominal muscle. My consultant also kept the incision as low as possible - it is nowhere near my belly button. It is actually just above my bikini line but would be completely unnoticeable if I wear a bikini with slightly higher bottoms. This made all the difference for me. Maybe you could ask your consultant to do the same.

  3. I was advised to have my ovaries removed. This was a really difficult decision for me as I am 42, 41 at the time of the op. I was really worried about the impact of surgical menopause. I think this hit me harder than the cancer diagnosis, so that’s saying something. My consultant advised it was because I had a rarer form of cancer (adenocarcinoma) but he also said that it was advisable since there is a risk the ovaries will start to fail anyway within 5 years of surgery, due to reduced blood flow, and it might be difficult to get a diagnosis when this happens. I have learnt, since surgery, that getting the right support around the menopause and hormone replacement is shocking and I can now see he was right, that it would have been a nightmare getting a diagnosis if I was experiencing a reduced supply of hormones as my ovaries started failing. Most GPs are completely incompetent in this area due to a lack of education, products on the market, and research into the needs of women. This does mean I have had to become my own expert in this area and push for the right support with surgical menopause, however. Other women may say they have had no issues at all after keeping their ovaries and they did not shut down after 5 years, so it really is a difficult decision.

I didn’t actually decide to have my ovaries removed until just before I was being wheeled down to surgery - nothing like working under pressure haha. I had gone into hospital the night before to do a bowel prep and the morning before surgery I met a woman on the ward opposite me. Before I even mentioned my dilemma or what I was in for, she told me her story. She had a hysterectomy 10 years prior for fibroids. At the time, she was asked if she wanted to have her ovaries removed and decided to keep them when advised it would probably be best. When I met her she was on the ward with stage 4 ovarian cancer. I felt at this point I was reassured to remove my ovaries. I still don’t know if it was the right decision but that felt like the sign I needed. I probably would have gone with my consultant’s advice anyway but it meant I was confident in my reasons for doing so.

I hope some of this information was helpful to you. I came across your post accidentally and I felt compelled to reply as I was in the same state of confusion as you are not so long ago - it all seemed so extreme for cancer that was found early on. The good news is I was all clear following surgery and although there have been challenges I am feeling a lot stronger. It’s a process, you will get there. Overall I would advise doing the research so you understand the why.

Sending a big hug x

Hi yes I had radical hysterectomy open surgery with 23 lymph node removed, I was in hospital for 6 days due to having blood transfusion and infection. I’m sure you will be ok for your family wedding just take it easy and don’t push yourself to hard , let your family look after you until you get back on your feet xx

Hi Lynzibelle,
Sounds like you have the exact stage as I did back in October last year. I had open RH with lymph and surrounding tissue removal also. Open surgery has greater success rate apparently. Surgeon went through my c section scar and opened it up further (hip bone to hip bone) so it is possible and hides under most underwear now. I also opted for ovary removal; my consultant told me womb removal brings forward menopause by 5 years anyway and retaining them can cause further issues such as adhesions which require further treatment so I went for it. I’m 39 so now in surgical menopause and getting into the swing of things with HRT. Symptoms not too bad so was the right decision for me.
Recovery from op is tough so take it slow. I’d given birth to my second child 4 months before my diagnosis and was told I could not pick him up for 12 weeks after op. Honestly I think 4 weeks might be seriously pushing it as I was not very mobile till at least 6/7 weeks and even then I knew when I’d done too much. Please listen to your body and go slow.

Tips for hospital: do not use support pants, go loose; granny pants in a size bigger are perfect

Other things to pack;

  • Night dress (you won’t be wearing pjs whilst the tubes are in)
  • lipbalm (lips will be super dry in hospital)
  • dry shampoo/hairband (you won’t be washing your hair in hospital for a few days)
  • facial wipes (so you can use from your bed)
  • loose trousers for travelling home and recovery
  • sanitary towels
  • slippers
  • mini fan

Tips for recovery;

  • get going on the constipation meds asap (psyllium husks are good and lactulose)
  • set an alarm for your pain relief
  • if given fragmin injections, ice the area for a few minutes beforehand, makes such a difference
  • oversized (or maternity) pjs
  • place pillows under your knees in bed; it takes the pressure off your abdomen
  • after the drain removal you’ll have a dressing to keep dry, wrap a towel or clingfilm round your waist in the shower
  • rest, rest and rest some more

Finally, I will say that the op was my cure and given the staging of the cancer it is most likely the op will be yours too so try not to worry about the next steps. Focus on the RH and recovery. Lean into the emotions and trust in your surgical team. You’re in good hands. Sorry for the long post but hope it helps and please update us. Best of luck x