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Lymph Nodes Clear

14 Feb

Hi,

Well I finally got a call from the Doctor this morning, and all the lymph nodes were clear. So that means the operation on the 25th is going ahead.

This is good news, and thank god as I really don’t think I was ready for any other news.

Somehow I don’t quite feel like cracking the champagne though. I think I’ve been really focused on that, and while it means I don’t to do chemo/rad, the surgical option isn’t fantastic either. But, the outcomes are better surgically, even if the treatment itself isn’t exactly easy.  In isolation being told you need a major operation is bad news, it’s a strange world where it’s actually good news!

The doctors exact words were ‘The nodes showed no signs of disease, which is reassuring’. I think that reminded me that there are no definitive answers, and there probably won’t ever be. I’d also forgotten that after the surgery they may still even then decide the risk is too much and make me do the chemo.

Anyway, maybe just having a bit of a down day! I also had a bit more pain today, so took some codeine, and I don’t think they are good for my mood. But hopefully now the 25th is the start of the end.

From a practical point of view, I should hear from the admissions department soon. I think I will go in on the 25th, and may be out on the 28th, but would have to go back in on the 30th to have various tubes and things removed. Or stay until the 30th, which I may do depending on how I feel. Then it’s “just” recovery.

I’ll do a post of the actual operation in the next few days.

 

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Test updates

7 Feb

First posted 19 Jan:

http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/19/test-updates.aspx

 

Hi,

Lots of tests going on this week, so a quick update.

MRI:

Test: MRI was at The Royal Marsden in Surrey on Wednesday. This was a special type of MRI to get a better view of the cervix. Best not to know too much about how that was done!

Result: Small tumor still remaining. Sort of expected, but there was always a chance the tumor has been destroyed by the healing process after the cone biopsy. Even if there was no tumor remaining, the surgery is still necessary if it’s shown to be invasive due to the risks of even a cell or two wandering around the local area.

IVF

I’ve had three scans this week. First showing 11 follicles, now it’s up to about 14, with 5 being a decent size so far. Still up to a week to go, but I’m told these numbers are good.

Other tests:

I’ve been poked a prodded a lot this week! Here is what happened.

IVF Stuff: 

3 x IVF Follicle Scans.

2 x Estrogen levels blood tests (I don’t seem to get the results of these. The IVF clinic use them to decide if they change my medications)

1 x Hep B Core Antigen blood test. This is just a pre-screening test I forget to get the GP to do. Negative result as expected.

Pre-Hospital Admission tests:

1 x Full blood count. (All normal)

1 x Blood typing blood test. (A+)

1 x ECG. Stuck with lots of stickers, then wired up, and my heart tested. All good.

Breathing flow rate test. That isn’t the right name, but the one where you blow in a tube to see how strong your lungs are. Seemed to be ok!

Blood pressure. 120/80. I am oddly proud of my textbook perfect blood pressure. It’s always been the same my whole life!

Height and weight. The one I hate the most! Note.. IVF is not good for weight. I’m assuming it’s that, not the chocolate. 🙂

I am, as noted before, perfectly healthy apart from the cancer. I didn’t really like this set of tests, mainly because it was at the Marsden in London. As the Marsden’s are cancer hospitals, it sort of makes it all a little real. The staff were all wonderful, but it’s not nice to be there.

I also realised I was quite young to be there. Most people were much older (and sicker), and I think the girl doing the tests was slightly bemused by how healthy I was. I felt a bit of a fraud to be honest.

DIY drugs

300iu injection of Menopur each evening, plus 2 sniffs of Synarel each day. Plus a round dozen of vitamin tablets each morning. I’m getting some nice bruises on my tummy from the injections, but otherwise it’s pretty easy now.

Other things:

2 x Acupuncture sessions.

We also spent two hours with the Egg Donation teams, to firstly get counselling about what egg donation would mean, and then to be put on the waiting list. This is a backup in case the IVF fails.

Number of new people this week who really should have bought me a drink before getting so personal.

3.

blush

 

On balance, an ok week results wise, and with what could be good news at the end.

It was hard to juggle all this around work – both the time off and the constant booking and re-booking phone calls – but I’m off work now until I get the all clear so hopefully stress levels will reduce.

The value of a second opinion

7 Feb

First posted 18 Jan: http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/19/the-value-of-a-second-opinion.aspx

I’m slightly hesitant to write this, as it feels like tempting fate, but on Friday there was what could be really good news from a second opinion.

My new doctor sent my biopsy report to a more senior pathologist, and he had a different opinion.

A diagram to help:

 

As mentioned, I have squamous cell cancer, but it was also determined that it had passed through the basal membrane (see above), and therefore it was no longer local, but was invasive cancer.

Once the cancer is invasive, the risks of it spreading increase massively, and that is why the treatment is so aggressive. Either fairly widespread surgery to remove the whole area at risk, and/or chemo/radiation.

However, this latest pathologist thinks that perhaps it hasn’t gone through the membrane.

That would be a massive difference. If that is shown to be the case, then the treatment is very different. It means they just do a much more extensive cone biopsy – which would remove a larger part of the cervix, but not radical (ie, not the surrounding tissue) and I wouldn’t need the lymph nodes removed.

I only got this info yesterday on the phone – while I was in a place where I couldn’t really discuss it, so I don’t know much more. The doctor said he will discuss it further in a MDT (multi disciplinary meeting) on Tuesday, and would let me know the outcome of their discussions.

I don’t know if the fact that the MRI found there was a little more tumor to remove could change the opinion – how do you know it hasn’t gone through the membrane when you don’t have all the tumor? – but maybe there are chemical markers they can see as well as the physical transfer through the membrane.

Nothing will be known for sure until the next operation, but I may come out of that operation with a very different diagnosis to the one I went in with.

Incidentally that operation has been moved to 4 Feb. I’ll update in another post all my various appointments yesterday, and all this week.

Stage 1b1 Squamous cell carcinoma. Moderately Differentiated

7 Feb

Originally posted 17 Jan. http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/17/stage-1b1-squamous-cell-carcinoma-moderately-differentiated.aspx

That’s what I have. Sounds quite scary when it’s written down, and someone has said to me I need to think a little more about cancer, and probably a little less about the IVF stuff.

So I’ll tell you what I know about Mr Stage 1b1 etc…

Squamous cell carcimona: This means the cancer is in the sqaumous cells. These are the cells that make up one of the layers of your skin, but also the lining of things like inside your mouth, throat, and of course cervix.

Stage 1b1: 

Basically it’s less than 4cm, and has not spread beyond the cervix. It was at least about 2cm as that was what was removed in December.

The next stages all relate to how far it has spread to within nearby and then more distant organs. Lets hope I don’t need to know much more about that!

Stage 1b1, and possible 1b2 may be able to have the trachelectomy. I think it’s not allowed in stage 2.

Moderately Differentiated:

This one is slightly harder for me to understand. I’ve never really heard it talked about, but as I understand it it relates to how likely the cancer is to spread.

Well differentiated is good, cells are similar to normal cells, moderately means cells are changing, and poorly differentiated means that cells have changed, it is a lower prognosis when it reaches this stage. Mine are moderately differentiated, and the other day the consultant was umm and ahh about this. He indicated that if it was poor then I would have to do chemo.

I looked for some images, but I think I might avoiding google image searching for proper cancer things.. some of those pictures are pretty scary.

So – as you can see, I’m kind of on the cusp for both the size and the grade to be allowed to have a surgical option.

The MRI I had yesterday was to get a clearer picture of the stage (size), and I think I will get the results tomorrow. The histology (grade) is based on the information from the cone biopsy in December, and they won’t know more about that until they do the surgery.

Tomorrow is a very busy day actually! I’ll let you know the schedule.

 

18 Jan

  • 08.45: IVF scan at the Lister hospital
  • 10.00: Meeting consultant near Harley Street
  • 12.45 (for 1pm): Marsden hospital for ‘fitness for surgery’ assessment. 

21 Jan

  • IVF Scan at Lister in the morning
  • EUA (Examination under anaesthetic), to decide again if they will do the tracelectomy, but I suspect also just to have a closer look at the tumour. 
  • They will also take a lymph node or 2 to do a biopsy. 

The doctor said the EUA would be 48-72 hours in hospital. But I’ll find out more about that tomorrow.

Now… last time we saw the doctor he said he wouldn’t do the EUA before the egg collection, to not put the cycle at any risk. But now he seems happy to do it ahead of the EC. I’m not that happy about it and will again ask lots of questions tomorrow.

23 Jan

  • 06.10 23 Susan arrives!

23-26 Jan

  • Egg collection

Then I think I get a week off as the consultant is on holidays. Would be nice to go a few days without some random person having a feel around! Next steps all depend in test results, so I am not ready yet to plan.

 

First post – Initial diagnosis.

7 Feb

First posted 15 Jan. http://community.macmillan.org.uk/blogs/b/kaths_cervical_cancer_blog/archive/2013/01/15/first-post-part-1-first-diagnosis.aspx

Hi all,

As vaguely promised, this is a the start of a blog to let you know where I am with my treatment.

I’ll be honest that the whole thing still feels like a bit of a story. I meet lots of doctors, and they all look very serious, and tell me I have to do more and more tests, but it still hasn’t really sunk in I think.

It’ll help me a bit to write it down, but feel free to skim through bits I’ve probably already told lots of you.

The story so far:

I went for a Pap smear in November, and I remember I got a call from the Nurse the day after. I missed the call, and worried myself silly for a day… I finally got in touch and she said ‘oh, just wanted to tell you there was a mild yeast infection, drink some cranberry juice.’ Such a relief – I knew how to deal with that!

When I got a letter a few days later, I really assumed it was just telling me things were ok, and so I opened it without the slightest worry.  It took ages for me to absorb what it said. Severe Dyskaryosis. I did lots of googling, and stressed myself out – which I am sure everyone does when they get a bad result!

Anyway, fast forward to a follow up with a consultant, and after another test (Colposcopyhttp://www.patient.co.uk/health/Colposcopy.htm) he wanted to do a cone biopsy. http://www.bupa.co.uk/individuals/health-information/directory/c/cone-biopsy. While this is called a Biopsy, in most cases it is also a cure – ie they take enough cells to actually remove any cancerous and pre-cancerous cells. In my case they also did a hysteroscopy ( I went to put in a link here, but you know what – you don’t need to know! ) which meant that the whole thing had to be done under a general anaesthetic. Hysteroscopy is basically a test further inside the womb to see if the abnormal cells have gone further. This test came back negative (ie, no abnormal cells in the womb.)

However, the cone biopsy wasn’t curative in my case. There were still CIN3 (pre-cancerous) and cancer cells on the edges of the sample taken, which was then the diagnosis changed to cancer.

That was on 7 December.  I look forward to celebrating the date next year with this whole thing behind me.

Going to Australia

One key thing was that the sample they had had gone through a blood vessel, so I had to get an MRI and a CT scan to ensure it hadn’t spread beyond the cervix. That couldn’t be done for at least 2 weeks from the Cone Biopsy, as my body would still be recovering from the surgery. That would mean the scans would be done around the 20th, and not a huge amount would take place until after Christmas. So.. we decided that we would still go on our holiday to Australia. Not much time would be lost, and there are lots of benefits from getting some family support and sunshine.

Which is why the first thing we did after a cancer diagnosis was go on a three week holiday! It was a fantastic break, and really helped me cope. In a way it also meant I could leave the cancer behind, and in Australia I was healthy. On the flip side, it made coming back that much harder.

MRI and CT Scan

Once we got back on the 29th, I then went for the MRI and CT scans on the 31st. I actually find the science quite interesting, and once I got over a little claustrophobia, the MRI was quite interesting. I had read this great blog post from Ben beforehand, so I did have an idea of what was to come. http://benbbrave.blogspot.co.uk/2011/02/mri-mini-rave-in-isolation.html This reminded me how much I really do like dance music… I must listen to it more often!

The only slightly hard thing was that I had to hold my breath for long periods. Which I didn’t really know about. So no music for me, as I was given regular instructions as to when I could breathe or not.

I actually got the results much faster than expected. All clear! Yay! But.. I think I misinterpreted what that meant. I thought if it hadn’t spread, then it was be definition very small, and could be addressed with a smaller operation. It seems that isn’t the case… or rather, it isn’t definitely the case.

But, back to that later (got to keep the suspense). Next step is IVF info.