Like mother like daughter?

8th April 2010 - Pre-op assessment

2010-08-27T16:49:10Z

My fiance was able to get time off work to attend my pre-op assesment with me; this time it was back at my local hospital so only about 15 mins away. From memory we were only there for a couple of hours over all...

First they took my weight, height, blood pressure and BMI. Next I sat down with a nurse to go through a 16 page form. She also gave me lots of leaflets to take away and read about anaesthetics, deep vein thrombosis, lumpectomy, sentinel node biopsy, visitor guide, carer's guide for post-surgery, and a few other bits I forget now

Finally I had an ECG (had the odd palpitations in the past so I guess playing it safe) followed by blood tests before going home. My fiance went back to work then I spent the afternoon sorting out last minute wedding tasks, including collecting the waistcoats and cravats from the parcel depot as I had missed the delivery by not being home!

Family History in Brief

2010-08-26T21:01:00Z

I have a significant family history, mum was diagnosed with Breast Cancer aged 36 got ovarian cancer 2 years later and eventually died aged 44 from secondary ovarian cancer. The youngest of my aunties on her side to die did so at 28. The oldest was I think in her late forties. My closest cousin on that side died at 40 (her mum was the one that died at 28) and so it goes on through the rest of the family...

For years I was convinced I would die aged 44 and it took a lot of work to get rid of that idea and accept that I am a separate person, my body behaves differently etc. I don't smoke, drink or do drugs. I eat reasonably well with fruit and veg but could use some more exercise!

I was referred to a genetic counsellor when I was in my twenties who went through my options. Unfortunately there wasn't anyone to test me against for the BRCA mutations because (a) most of my family who got it died and (b) those members of my family who have survived breast cancer live abroad in the caribbean and it is beyond our financial means to organise DNA testing. The outcome was that they would just keep monitoring me. I've been having annual smear tests since the age of about 24 and they started me on mammograms aged 34. My latest genetic counsellor also tried to get me onto the MRI trial but because I was considered too young they said I didn't qualify. As a result she suggested I try for MRIs again aged 40. She also tried to get me on the UKFOSS trial and was told I should try again at 35. Of course, now that I am 35; I have Breast Cancer... (part of me wonders if I had been on the MRI trial if they would have picked it up because they do say they can see things 3 years before you feel them. I also gather that rules changed on MRI screening in the past 18 months so had I know that, I may have been able to pick up the cancer earlier, anyway...)

NOTE: As a result of having breast cancer I was able to be tested and am the proud to be a BRCA1 mutant - at least it means I can help in some more clinical trials :D

7th April 2010 - Sobering words about fertility options

2010-08-23T14:30:38Z

We'd actually been intending to start a family this year and in our ideal world I would have been about 2-3 months pregnant when we got married in April. Just was well I wasn't with the discovery of the breast cancer in Februrary! Anyhow, this meant that retaining fertility throughout my treatment was a consideration hence my BCN arranging an appointment for me to meet with a 'consultant obstetrician and gynaecologist'.

Unfortunately my fiance couldn't attend the fertility discussion appointment but we managed to get one of my friends to take 1/2 day off work to go with me. Of all the appointments I'd had so far, this was the most difficult. I had naively thought there was a window of opportunity to harvest eggs after my surgery and before starting chemo - I was very wrong!

The consultant obstetrician and gynaecologist outlined all the options then discounted all but IVF due to the low success rates. In terms of timing he said I should focus on getting better first then to come and see him again after treatment. He could then put us through a cycle of IVF by which time the embryos would effectively be 36 years old. I would then do '2 years penance' as he called it after chemo and as long as I were free of recurrence during that time he would then support a pregnancy. Even though I'd be 39 by this time (39/40 on birth if all went well), as the eggs were from when I was 36 he said we'd have a 33% chance of success.

The thing he threw into the mix that I hadn't really given thought to was the ovarian cancer. He suggested that I try and find out whether my mother had developed a new primary ovarian and died of secondaries (as he thought) or whether it was a secondary from the breast cancer (unlikely apparently). I asked if he could get her records and he said no, but that I could by contacting the health trust where she was treated.

Anyhow, what it boiled down to was, after he consulted with an oncologist, he said that I may need to consider an oopherectomy before I am 40. However, he could still support a pregnancy as long as the uterus were intact. He said that if I did get ovarian cancer and they did a hysterectomy that pregnancy would no longer be an option for us. My friend was sobbing all the way through this having had no idea how bad my family history was, etc.

It was quite difficult explaining all this to my fiance when he got home from work. He realised then that he wanted children more than he thought he had - but said the focus was on me getting better and we'll have to deal with things as they come.

6th April 2010 - the value of BCN support

2010-08-22T23:56:36Z

On D-Day my breast care nurse (BCN) suggested that I e-mail her a list of questions over the weekend so that we could go through those and information about the upcoming surgery at our next appointment which she scheduled for 6th April 2010.

So back to the specialist centre I went, once again with my fiance who wants to be part of everything at the moment (for which I am very grateful) :) My list was rather long (see below) and as it turns out actually covered off much of the stuff she wanted to speak with me about. She was very helpful. She had also arranged an appointment for me with a fertility specialist the next day at another hospital within the trust and my pre-op for the following day! It was going to be a busy week!

This is the list of questions I asked her (it was a mix of things I'd come across from various resources combined with my own questions); I provide it here in the hope it saves someone else going through the same thing some time. (NOTE: I got my answers to all of these questions during the session but I haven't typed up the answers here.)

Diagnosis

1. I was told I have grade 3 invasive ductal breast cancer. Is it a particular type of lump (e.g. Medullary, Mucinous (colloid), Phyllodes or Tubular) or is it just a malignant fibroadenoma? I ask because looking at the ultrasound the shape looked incredibly 'neat' with the exception of one teeny bit (and I understand that the surivival chances for different types vary).

Surgery

2. I received a call from my GP on Thursday confirming they had received word of the diagnosis and that I would be going into surgery for a Wide Local Excision. The consultant who delivered the diagnosis had referred to a lumpectomy rather than WLE. What is the difference between a lumpectomy and a WLE or are they just different terms for the same thing?

3. Am I having a WLE in order to get clear margins because it is a malignant tumour?

4. What will the pre-op assessment involve?

5. Anything special / unusual should I pack in overnight bag for the hospital stay other than nightwear and toilitries?

6. Can I eat and drink as normal the night before and on the day of surgery?

7. How long will the procedure take?

8. Will I be having a sentinel node biopsy or will they take 4 or so lymphnodes out for testing?

9. How long will it be before I wake up afterwards?

10. Will my husband be able to see me before and after the operation?

11. Where is the waiting area for him whilst I am in surgery?

12. Will I be able to go home first thing the next day?

13. Black skin scars very easily and takes forever to fade. How soon can I start using bio-oil on the wound?

14. Will I see you again after the operation for advice on how to look after the wound or will the come from the surgeon?

15. Will I get the histology results (2 weeks later) down at the specialist centre again or the clinic at my local hospital?

Chemotherapy

16. Can I get anti-sickness drugs? I hate vomiting, can count number of times in my adult life on one hand.

17. How soon after the histology report will I meet the oncologist to discuss drug treatment options? Think you said one week but can't recall.

18. On the assumption that I will lose my hair, would I qualify for a free wig?

a. If so, how soon could we look at this in order to get a style that suits me?

b. Is there anything in the county akin to the BCC HeadStrong service to help advise on scarves, etc.

Radiotherapy

19. If the surgery removes the lump with clear margins and the chemotherapy takes care of any rogue cancer cells, why would I need rads too?

Fertility

20. Did you manage to make an appointment for me to see the fertility specialist in relation to the effects of chemotherapy?

21. Should I assume eggs may need harvesting and start recording my BBT now?

Genetics

22. Can I be gene-tested for BRCA1, BRCA2, TP53 so that the results are then available for my niece should she choose to be tested in the future? This was a problem for me with all the relatives being abroad or dead already.

General Questions

23. Is hospital transport available or do I need to make my own arrangements when my husband is unable to drive me?

24. Can you give me form FP92A so I can apply for prescription exemption?

25. As I will be off sick from work for a few months at least, is there any reason you would advise against getting a dog to keep me company?

31st March 2010 - D-Day (Diagnosis Day)

2010-08-22T01:57:27Z

Once again my fiance went with me to my appointment. This time it was at the specialist centre and we were taken into a nice little room with sofas. I should have twigged something was up when the breast care nurse (BCN) asked if I wanted them to record the session for me (which I said yes to).

My mind was sitting in some isolated place of calm not really taking in the impact of what was being said to me - a very surreal feeling. When I went back and listened to the CD it was as though I were at a work project meeting dealing with a problem and working up solutions then thanking the team so much for their time! Almost funny in a way :)

Anyhow, the diagnosis was grade 3 invasive ductal carcinoma which was ER- and PR-. They had not yet tested for HER2 and advised they would do this after the lumpectomy. I was also advised that I should have chemotherapy and radiotherapy after surgery due to the aggressive nature of the tumour, my young age, and family history. Great that they are happy to throw everything at it, just a shame I have to go through it at all.

The NICE 4 week treatment guideline is from diagnosis date so the clock started ticking here. This presented them with a problem because I was due to get married in Norway on 17th April and would be there the week before and having a mini-moon the week after. This meant that they had to get me in for pre-op the following week and scheduled me in for surgery on 26th April as soon as I was back. What a start to married life...

20th - 30th March 2010 - My wait goes on...

2010-08-22T01:51:09Z

This wait didn't feel at all like the last one. I was surprisingly productive at work and was bouyed by my fiance reminding me that the biopsy results were benign. Not 'inconclusive', but 'benign' which was a good thing. So, I began to think I'd be fine and it was all a lot of stress for nothing.

I don't know whether to be glad that the stress wasn't for nothing or not ;)

19th March 2010 - The Results, not!

2010-08-21T14:58:09Z

The day I had been waiting for came and this time my fiance came with me. I went for my scans first and there was some confusion over having both a mammogram and ultrasound again as I'd only been booked in for the ultrasound. The poor nurses ran back and forth and in the end the consultant radiologist made the call that he'd do the ultrasound but I shouldn't have another mammogram so soon.

Once I had the ultrasound it was still an hour before my consultant appointment and the radiology nurse very kindly took me through to get me seen earlier which she managed (the NHS have their great moments) :)

The consultant advised that the core biopsy results were benign but he didn't look especially happy about it so I didn't really absorb what he said (my fiance clung to this though). It turned out that the consultant radiologist was concerned about something and was recommending another core biopsy. This was the last thing I wanted - another 2 week wait!

So, off I went back to the xray dept for an ultrasound guided core biopsy and he took 2 samples - the picture was much clearer than the sonagram. I also had 2 medical students observing; I felt for the guy as he didn't know where to look!

The breast cancer nurse (BCN) arranged an appointment for me on 31st March due to Easter messing things up for their normal 2 week wait and this time I was to travel to the specialist breast care unit a little further away from home.

6th to 18th March 2010 - Waiting is the Worst

2010-08-19T14:45:23Z

What then followed were without question some of the worst weeks of life. I couldn't concentrate at work and took some time off sick with 'anxiety'. I just wanted to find out as much as I can to try and make contingency plans for work (can you tell I'm a project manager?). This need to find out details is one of my coping mechanisms and I personally find it very helpful (there are those who say I shouldn't read up on things and I strongly disagree with them). Knowledge gives me a sense of control - even if it is an illusion

I spent three days researching about different types of benign and malignant lumps and made myself a mindmap covering all sorts of issues including treatment options.

(detail of mindmap is not shown here so as not to contravene the MacMillan site usage policies)

In hindsight it's a really good thing I did all the research at the time because once I got the positive diagnosis I was in no condition to research anything!

5th March 2010 - Triple Assessment

2010-08-19T14:03:25Z

I had hoped to be seen within the week but my appointment date came in for the end of the 2 week NICE guidline which was a shame.

I drove by myself to the local hospital where a specialist breast cancer clinic is run each week. The consultant reviewed my history, did the physicial breast exam to confirm the lump existed. I can't remember the order... I think he then did a sonagram because the radiologist for the ultrasound was on holiday. Next he sent me for a mammogram with instructions to return with the xrays. This I did and it came back BIRAD4 with a clear shadow so he did a core biopsy (took 4 samples) using the songram for guidance.

I remember the nurse who was present being quite concerned as to whether I was alright, almost treating me as though I didn't understand the impact of what had been done; I assured her I was fine. I was told to make an appointment for 2 weeks time to have another mammogram and an ultrasound prior to an appointment with the consultant. I duly did all this then had a bit of a stress-relief cry in the car before driving myself home.

The the waiting began...

22nd February 2010 - GP confirms the lump

2010-08-18T14:06:51Z

The first day that the GP was open once I was back from Norway I rang up and was given an emergency appointment and able to see my GP personally straight away.

After a bit of a telling off for not having let her know that I had been refused for the MRI scan and UKFOSS trial so she could have tried pushing it further on my behalf, she confirmed the lump and put me on a 2 week referral which she told me is consistent with the NICE guidelines if cancer is suspected.

Due to her awareness of my family history and checks for lumps in the past (all benign breast tissue) she was very straightforward with me about the fact that the lump could be cancer; but it might not be - we would have to wait and see.

13th February 2010 - Finding the Lump

2010-08-18T14:03:44Z

It's Saturday and we are due to fly to Norway in a few hours for our final wedding planning trip before the big day in April.

I have regularly checked my breasts every 3-4 weeks for over 10 years so when I found a definite lump in the shower, I knew it wasn't normal for me, far from. I got my fiance to check it too and he pretty much fainted there and then leaving me standing there with water pouring all over me!

Skip forward, he thinks he is well enough to drive so we got in the car for the 2 hour drive to the airport - meanwhile I got on the phone to NHS direct to find out if the European Health Insurance Card (EHIC) would cover me for scans and tests in Norway that could be sent back to England in order to minimise any delay in diagnosis. They said I could not as finding a lump (despite family history) is not classed as an emergency under the European Health Insurance Card. They told me to make appointment with GP.

Being a Saturday I was transferred to the out of hours GP surgery service and told they couldn't do anything that day, or even make an appointment for me for when I got back and that I would have to call up again myself once I was back!