Tag Archives: Trachelectomy

Time to start a new journey.

2 Sep

This post will hopefully be the last one on this blog, apart from perhaps the odd confirmation that things continue to go well.

Our big news is that we were joined by our beautiful baby Elliott Lewis on 25 August 2014! Weighing 2.140kg and at 33 weeks 4 days gestation.

Luckily we had a little warning so were able to get some steroids in a week before he arrived and he was able to breathe unassisted from the start. His little tiny organs have done their job wonderfully and only a week later he is actually off all support and just sleeping in a warmed cot. He is still in hospital but after 7 nights he was moved from NICU and is now working his way down to special care. The last thing we need to do is get him to feed by himself as the instinct to suckle hasn’t quite developed yet.

But we feel so lucky! It’s a great gestation after an adventurous pregnancy and he is simply beautiful. Beyond beautiful.

 

 

First picture

 

 

IMG-20140829-WA0015

 

 

1622218_10152689383863210_3795710373421148138_n Last photo is 1 Week later.

But for me this is the end of a long road, and the start of a new one. I couldn’t have believed we would be in this place only 20 months ago when I was diagnosed, Elliott is surely a miracle baby, helped here by the hands and love of many many people. There were lots of hard days, frustrations and just the ongoing fear and stress that illness brings – but every single moment was worth it when we hold our son in our arms.

My only advice would be to keep pushing on, even when doctors might give up, or the options available seem years away and the problems look insurmountable. However, I am fully aware that luck has played the biggest part in us getting to this point, so we are simply grateful.

Hopefully I’ll still hear from people through this blog and that it gives hope to women facing scary times and tough decisions. There can be happy endings!

Kath and Elliott

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No news is good news

13 Mar

Hello all,

Sorry for so few updates, I feel like I have abandoned this blog a little! Not a lot is going on, and I am just spending time at home getting better.

I did get some positive news about my tests, but only via a muffled voicemail, so I am waiting until I speak to the professor on the 18th of March before I read too much into it. I have misinterpreted results before! So, I’ll update once we find out on Monday what the next steps are. But, signs are good at this stage.

In relation to recovery, I mostly feel fine. I feel close to 100% when I’m at home, but once I go out in the cold I still tend to get pretty tired, and the odd bit of twingy pain. I have also found that my drinking tolerance has dropped worryingly – I’ll have to put in some solid hours improving that! Tomorrow is a big adventure across London for an afternoon out on the Thames (in a nice boat) which will be my first departure from the Shepherds bush area in about 10 days. Oh – the excitement!! But, will be great to get out and about, and remind myself that there is a whole world out there I need to return to at some stage.

I will update when I hear from the Prof next week.

 

 

Hospital Week

6 Mar

Monday

So the week at hospital was educational. Easier in some ways (less pain), harder in that it was much longer.

We arrived at 7.30 on Monday, feeling much more comfortable after the trial run and full of knowledge as some people were wandering around trying to find the admissions area. The start was all pretty much the same, lots of basic questions to confirm I knew I was there for the right thing, checking of weight etc.

I was much calmer than last time, which I can tell for sure as I got my blood pressure done. Something normal like 117/70ish.

Straight into theatre this time, and again as I was calmer I wasn’t given a mild sedative while we waited for the surgeon to sweep in and say hello! So I had the standard small talk with the anesthetists and then next thing I am waking up in the recovery room. It was actually quite a stressful wake-up unusually. I was really nauseous, and so woke up feeling like I wanted to throw up, and in a fair bit of pain. I ended up in recovery for about 3 hours I think.

Annoyingly, the doctors AGAIN didn’t contact Susan and Eric. So they were sitting around from about 12 (when they expected a call) to about 3.30 getting more and more worried about me. While I was happily getting bored in recovery. Finally they were told that the nurse was coming down to get me, so at least they knew I was ok, and it still took an hour to come back up as there was a shortage of porters. I was getting a little frustrated by then, but I didn’t know they were sitting about worrying! The doctor I had been speaking to in the morning (who was assisting) made a point to get Erics number, and double check it was correct, but still didn’t call. Remember that Mum in Australia was sitting around at 3 in the morning at this stage!

Anyway, annoying – but not something to dwell on.

When I got back to the room, I was much better than I was the last time. Much more alert, and in less pain. The support team (Eric and Susan) commented immediately that I looked much better! And I felt better. Surgeon came to visit and said all went well, and that it looked like clear margins, but it would take 7-10 days to find out.

The rest of the evening was pretty calm. I had a light, and very slow, dinner, which included a short nap during dinner, as you do. When Eric and Susan left, so must have been quite late, I got quite nauseous and had to get the nurses in. They changed all my meds to drips as a result, which was good for nausea, but bad for sleeping.

However, the first night was ok. Slept a bit, despite the  normal constant monitoring and drip changes. I think I gave up at about 6am and turned on the TV.

Tuesday

(don’t worry – they won’t all be long!)

I stayed on the PCA (Patient controlled Analgesic) all Tuesday. That is kind of nice in that you can control your own level of fuzziness, but I probably could have done without it, and it tended to make me nauseous  It’s Fentanyl on a drip directly into a canula on my right hand. When I woke up I had four canulas in – two in my right hand and one in the left, and one on the inside of my left arm on the artery. The arterial one is removed immediately.

I started to have problems with the canulas on day 2. Every time they wanted to use one they had to flush it through, and it was incredibly sore each time, as well as whenever they started a new type of drip. I’d had no problem with that in the past so I’m not sure why, but all three of them hurt. They stopped using the left one totally, and one on my right was devoted to the PCA – so they ended up with only one available choice which kept getting blocked, and clearing it was painful each time.

They seemed to initially try to do the arterial catheter on my right arm first, as there was a massive bruise covering my wrist inside wrist and down my arm, with a few needle holes in it. Mustn’t have worked, and I’m glad I wasn’t awake for the attempts! I had spectacular bruises down the inside of both arms from all the various injections and canulas.

I had the initial wound dressings removed on Tuesday as well. Odd, but painless. Lets leave that there!

Wednesday – Friday

So, not much more really happened from then on. They removed the PCA on Wednesday, and on Thursday they were happy to remove the canulas (yay!). I was running a temperature on Wednesday night I think, and consistent low blood pressure, so worth staying in to be monitored. I think they added some extra drips to try to up my pressure.

They also removed one of the catheters on Thursday, and gave me the option to go home on Thursday. I could have, but to be honest I wasn’t keen on managing the bladder catheter at home, and I would have had to come in on Saturday to have that removed and have the bladder function tests done.

I started to walk as soon as possible, from the Tuesday onwards. Starting with little walks down the corridor of the ward, and then on Thursday and Friday I went for a long (!) walk around the inside of the hospital. I felt quite like a real sick person then – I was wandering around carrying the catheter bag (nice!), very slowly in hospital blue booties. And when I was walking I was hanging onto Eric’s arm, which wasn’t just for show, I did need him to hang onto from time to time as I either lost my balance, or just got tired.

On Friday, when Eric finished his shift and went to work, he ran into Susan on the street (starting her shift) and they discussed that I was ready for an exciting visit to the outside world. The handover had become very efficient by that stage – much like the nurses handover each shift! Susan had dropped my rings into a jeweler across the road to be replated, and I went with her to pick it up. Here is the walk:

Walk

So, I estimate something like 150m all in. The ward lift is right beside the exit, so no long walk in the hospital either. This was the walk that wore me out! I got back, had to take some pain killers, and basically dozed then for a couple of hours. I was completely shattered! Up to that point on Friday I had been fine and chatty sitting on the bed. It was a shock to realise how tired I could get!

Visitors:

Eric and Susan were there pretty much all day every day, which was fantastic. I discovered that hospital can be very boring, despite various computers and TV options. I wasn’t as distressed as I was after the last operation (where I was in more pain), but I was in for much longer, as so it was great to have people come and visit.

Jess dropped in on two morning, which was great to get me up (well, awake) and moving. And Michael and Josh came one evening to play Uno. I felt I had to shush them, as we were having far too much fun for a hospital ward!!

Things you learn about yourself with a weeks monitoring. 

  • I drink a LOT of water when it’s available. I got sort of sensitive about it, as someone had to empty the catheter from time to time! 
  • I have very low blood pressure when sleeping. Which may explain the odd dizziness in the mornings, something that’s sort of useful to know.
  • You can ‘play’ the observations. On Saturday I wanted to leave, so I knew I needed good blood pressure and Oxygen levels. So I sat up, woke myself up properly, and took a few big breaths. Makes a huge difference to the results!
  • Very small amounts of oxygen on those odd looking nose things has a big impact on blood oxygen levels. Took them to 99%, rather than the normal 94ish%

Also, weirdly, I didn’t see any other inpatients in the whole week I was there. I was in the private wing, so everyone had their own room, but even on my little walks I never say anyone. There were 8 rooms in my area, and I only got the odd glimpse in the room next door. Otherwise it was all oddly patient free. Last time I was next to a normal ward so there were a number of people just behind curtains. It’s not surprising in the area I was I suppose, but it felt slightly strange. My room was lovely and quiet – I didn’t hear all the beeps and things that I heard last time – apart from my own noisy machines.

Nursing staff

Nurses are wonderful people.

Without exception, for all my operations, they have been wonderful, and caring, and always patient and helpful. They have a difficult and sometimes intrusive job, but always done with good humour and can make the difference between a good and a bad time in hospital. It was very sweet when someone would come back on shift, and be genuinely pleased to see me looking so much better. So thank you to all the nurses!

Saturday

So, on Saturday I was woken at 6am to have the catheter removed, and so started the pee test! I never wanted to pass a test so much. 🙂

I had to go to the loo, and then they would do a scan (with something like a sonar) on my bladder to ensure it was empty. Test 1 was fine, but I failed the second test – oh no! I think it was because it took them 10 minutes to do the second test, and the aforementioned excessive drinking meant I was refilling the bladder to fast.

So, that meant delays… the nurse had to get the registrar to see if they would let me go with one bad result. They decided to do one more test (the alternative was going home with a catheter) and I had called them to the room, then went to the bathroom, then back for an immediate test, and I passed easily! As Eric said, I’ve never been so keen to pee!  We had already packed, so made a swift exit.

Took a cab home, and went to sleep again. Another three hours sleeping to recover from the excitement of the day!

So that’s all. Now we are just waiting for results, and taking it slowly at home to get better. Fingers crossed the results come back well, and then I can start to return to real life.

Marsden update

25 Feb

Hi all,

Just a quick update to say all went well today, and I’m back in good drugs land. No complications, and the Prof said the margins looked good, although we still have 10 days to wait for the final report.

Due to my nice trial run a month ago, I’m aware that I felt fine at this stage last time, so I’m prepared for the impact when the rest of the general wears off. As well as the local anesthetic injected directly in the operation site.

The only big difference is that I am quite nauseous, which is made slightly worse by the personal pain killer button, but I’m hoping that will clear away soon. I’m not giving up the pain meds!

Anyway, just a quick note, so that’s all for now – I’m going to go back to dozing and hopefully get a good nights sleep.

Getting ready for tomorrow

24 Feb

I’m at home tonight, getting around to packing for the hospital. It’s very easy to pack I must admit – select a variety of granny nighties and the dressing gown… throw a few toiletries in and it’s done!

I went for the pre-operation assessment on Friday, and all went fine. It was the normal set of blood tests, blood pressure, lung function, height weight etc. I’m very used to it all these days!  I asked to speak to the surgeon as I hadn’t spoken to anyone in weeks about anything. It’s been strange going from appointments virtually every day in the middle of January to long periods where I am just left alone these days. So I felt a little unprepared for the operation on Monday.

One of Prof Shepherds surgical fellows came, and she was much nicer than the one who spoke to me before the last operation – who gave the feeling like talking to me was a necessary evil! She actually listened, and went through all the potential complications, and took into account what I was worried about – even if they are minor things. She also said there was no chance this operation could change into a hysterectomy on the table as far as she was aware, and that she promised I would wake up with my uterus intact. Which was really good to hear.

The main risks are to do with moving the other things out of the way, as I mentioned in my last post.

Then she talked me through all the other potential complications. I’m not really sure why they go through the full list of complications. There isn’t anything I can do about them as I have to go ahead, and it is a little scary. They are low risk, like 1-4%, but I can’t help thinking that with Prof Shepherd having done 250 or so surgeries, that means between 3 and 10 real women have had each of these bad complications. As I’ve been on the wrong side of a few stats recently, it feels much more real. I know the risk is low… but if it is you – then it’s a 100% impact! But, I can’t worry about something I can’t really influence, so I’m trying not to.

With the tumor, they are really only looking at the margins to ensure it has clear margins, and perhaps to assess the aggressiveness  but she said the margins where the main thing to worry about.

The surgeon also said this operation should be less painful from a recovery point of view, as they are not cutting through the abdomen.  However, it is still 4-6 weeks… so I’m not sure what takes so long. I suppose I will find out! The other operation was 2-3 weeks, and it did take 2 weeks, so I can only assume they know what they are talking about.

So, fingers crossed please everyone! The support really does make a big difference to me and it’s great to know that people are thinking of me – wherever you are.  Lucy – I’m also thinking of you, and while I can’t see you before your trachelectomy on Wednesday, hopefully I can give some kind of update here before you go in, and let you know that it all went well.

One minor thing. While I do love pressies as much as the next girl, I think there are others who can make much better use of the funds! So, can I please request that from now could you please make a donation in my name to Cancer Research UK. I have relied a huge amount on their very helpful website, and this new surgery is only possible due to years of research.

Thanks! Donation Page

Cheers all. I will handover control of the Blog to Susan and Eric so they may update over the next few days.

Radical vaginal trachelectomy

19 Feb

Ok – if you have made it past the title, then hold onto your hats and I will explain the excitement that awaits me next week!

I posted a while back about the potential treatments I may have, and one of them was the Radical Tracelectomy.

As a result of all the various tests, the surgeons are happy to do the Trachelectomy. That is what I had been hoping for, so it’s a good result, although still quite scary.

Extract from the earlier post

Name Treatment Intended Effect Side effect
Radical Trachelectomy Remove cervix and surrounding tissue. Remove area affected by the cancer. Can still carry a baby, but not give birth naturally. Very high risk of late miscarriage.
Lymphectomy Remove as many lymph nodes as they can find in the groin area Lymph nodes are normally the first areas impacted by spreading cancer. Best to get rid of them! Leg swelling. Not sure if that is forever.

As you know, I’ve had the lymphandectomy. It seems that in a lot of cases they do both these operations at the same time, but I have had it done separately. I’m fine with them being done separately, as I believe it reduces the uncertainty with this next operation. They know at this stage that the lymph nodes look clear, so it is more likely that the trachelectomy would go ahead as planned without any surprises.

So, a bit more here about the Trachelectomy for those that want to know.

Trachelectomy:

The goal of this surgery is to remove all the cancer, as well as surrounding tissue to try to reduce the chance of recurrence. The team keep reminding me that getting rid of the cancer should be the primary focus, and in the past,  surgeons would just perform a full hysterectomy – ie the removal of pretty much everything from the cervix up – including ovaries, womb, cervix and the surrounding tissue to be sage. That’s a pretty intense operation in itself, and clearly it completely removes any chance of having children. Plus immediate menopause and other fun things.

So, being human beings, doctors looked to create a less extreme surgery, especially as cervical cancers are regularly found a lot earlier these days due to pap smears.

Radical Trachelectomy was developed (in part by my actual surgeon) to try and be a little more conservative for early stage cancers. It is becoming more common, and my surgeon has done the operation about 220 times, but he said there have only been about 1000 worldwide.

The image below is a summary of the operation. The cervix is a link between the womb and the vagina, so if the cervix is removed then those two elements have to be stitched together instead. The surgeon will make an assessment during the surgery as to how much cervix to remove. They will try to leave some cervix (at the upper end) if possible, as reduces the risk of early miscarriage.

Image3

Now, the NHS website says that no surgeon can promise that they won’t have to change and do a hysterectomy once they get started. However, one of the other surgeons said he had never heard of that happening… but he wasn’t a specialist. So I will ask the surgeon on Friday if possible. Maybe the fact that I have had the lymphandectomy reduces the risk of there being a change mid operation.

You can see from the image that there are blood vessels and things that need to be moved and re-routed where necessary.

Without a cervix (or only a partial cervix), the surgeons also have to put in a new ‘tie’ at the bottom of the womb. It’s called a a cerclage – which is a permanent stitch. I believe that if I do get pregnant, I would have to have another small procedure to close up the stitch properly to try to, again, reduce the risk of miscarriage.

Image4

So, that’s it really.  Remove a bit in the middle, and tie the remaining bits together! Easy. I don’t know how long it will take, maybe a couple of hours. There is no surgical scar – the whole thing is done via.. ahem.. the existing access point! I can’t understand how, and have decided not to investigate.

Sometimes they do the lymphandectomy at the same time, but I had mine done last week. So they KNOW that it hasn’t spread – I think therefore the risk of them widening the surgery is low, as they already know it hasn’t spread. Well.. that’s what I hope anyway.

The image above also highlights a few of the other risks. The white ‘blobs’ in front of and behind the cervix area are my bladder and bowels. These have to be moved out of the way. One of the reasons for a longer stay in hospital is that normally women have trouble with their bladders for a while, as it’s near impossible to avoid the nerves around the bladder.

There are other nerves that run in the area, specifically the nerves for upper legs. I have heard stories from women recently (via the Macmillan site) who have had quite bad upper leg pain from damaged nerves, either due to direct surgical damage, or from the position you are in for the operation. That is also something I would rather not know about. As far as I am concerned, I go to sleep on a nice trolley, and wake up on a bed. I don’t want to know how they manhandle me in between!

But, overall the complication rates for this surgery are much lower than for a hysterectomy, and the long term prognosis is good. I will continue to have 3 monthly checkups for the first year, then 4 monthly for a few years… etc until at 10 years they discharge you back to your GP. The only potential fly in the ointment is if they do further analysis on the tissue removed and decide the trachelectomy isn’t enough. I’m not fully sure what they are looking for, but so far most results have come back clean, so I’m hoping that will continue.

As I said, this should be the beginning of the end. I’m pretty healthy at the moment, so that will stand me in good stead for the operations. I’ll be in hospital for 3-5 nights, and I think the main reason is that I will have various tubes in me which will stop me moving – mainly related to the previously mentioned ‘blobs’ above!

After that – recovery is 4-6 weeks, and they say you tend to be weaker and more tired etc for up to 6 months.

I think that’s all… any questions?

Edited to ad: I think you can see the video now. I’m made it public. Nina… I apologise in advance!

Fertility and horrible cancer treatment options

7 Feb

First posted 15 Jan: http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/15/fertility-and-horrible-cancer-treatment-options.aspx

Some of the more attentive of you may have noticed that I don’t yet have children.

Despite rumours of screaming, and no sleep, and tantrums in shopping centres, for some reason I still seem interested in them! So far in life the fertility gods have not been that helpful, and that was before they decided to add cancer to the mix.

As you can probably imagine, cervical cancer is quite close to some pretty important baby making machinery. Boys – you may want to look away now… in fact, you may want to look away for most of this blog!

In many ways, I was much more concerned (and still am) about the impact of all this on fertility rather than the cancer risks. I don’t really believe the cancer is that serious (which is an odd thing to say I realise) but the impact on fertility to front and centre. I’m starting to learn more about the cancer, but for now lets talk fertility.

Potential treatments for Cervical cancer:

1.    Radical Hysterectomy + lymphectomy+ removal of ovaries: (+ possibly Chemo/Rad later)

ectomy is surgical speak for ‘removing’.

Radical means they take a decent amount of tissue around the organ – so with radical hysterectomy they remove the uterus, and a lot of the surrounding tissue. 

This, to me, is worst case scenario. Sadly it is considered the ‘standard of care’, so it is what doctors have in mind as the nomal treatment, so I have to keep them distracted while I search for other options!

Obviously this means zero fertility, with immediate menopause thrown in for fun. Having spent a week on drugs to mimic menopause, I can tell you it isn’t much fun. If I was older, and had had kids, or was past menopause, this would be the automatic treatment. It seems like crazy overkill to me, for something that is only a few cm in size, but I am learning that size isn’t everything.

You only find out after the tissue is removed if you need to also have radiation.

Name Treatment Intended Effect Side effect
Radical hysterectomy Remove uterus and cervix and surrounding tissue. Remove all areas which could be affected by the cancer. Complete infertility.
Lymphectomy Remove as many lymph nodes as they can find in the groin area Lymph nodes are normally the first areas impacted by spreading cancer. Best to get rid of them! Leg swelling. Not sure if that is forever.
Removal of ovaries Removal of ovaries There is a high link between cervical and ovarian cancer. So they prefer to remove them Menopause. Infertility.
Chemo/Radiation See below

2.  Radical trachelectomy + lymphectomy: (+ possibly Chemo/Rad later)

Trachelectomy is a relatively new treatment, and is referred to as fertility sparing surgery. The idea is that they remove the cervix (and surrounding tissue… see you are learning already!), thus leaving the womb intact.

Name Treatment Intended Effect Side effect
Radical Trachelectomy Remove cervix and surrounding tissue. Remove area affected by the cancer. Can still carry a baby, but not give birth naturally. Very high risk of late miscarriage.
Lymphectomy Remove as many lymph nodes as they can find in the groin area Lymph nodes are normally the first areas impacted by spreading cancer. Best to get rid of them! Leg swelling. Not sure if that is forever.

This is the surgery I would prefer. Without the Chemo/Radiation. I am currently being assessed to see if I qualify.

They only let a limited group of people do this surgery, as it isn’t a foolproof as a full hysterectomy. The stats for re-occurance with those who get this surgery are actually better than the hysterectomy group, but the reflects the selection criteria, not the treatment itself.

ie. Those who get this treatment tend to be earlier, and lower risk, healthier patients anyway – so the re-occurance rate would be lower anyway.

Without a cervix, which basically holds the womb closed, there is clearly a risk with any pregnancy. The womb would basically be surgically stitched closed, and then a c-section for delivery. There is a high risk of late term miscarriage, but at least the option still exists.

3. Radiation/Chemotherapy.

I don’t know much about this, as I don’t want to really think about it.

What I do know is that radiation is very dangerous for everything in the area, including bowel, bladder, as well as womb and ovaries. It is possible to surgically move the ovaries out of the way, but this isn’t foolproof, and the act of moving them can also cause them to stop working.

If I get to this stage, fertility is pretty much gone – but it would be good to still try to keep ovaries to stop going through menopause.

A side note on removing ovaries.

The doctor mentioned the other day that if I get to keep my ovaries, then they would be monitored regularly for cancer, and would be removed once I get to natural menopause.

A side note on my notes.

This is all just my interpretation of what I have been told. I reserve the right to be completely wrong and change all information later!

(This post seems to have turned into a general explanation of the cancer treatment options. Which is good I suppose!)