Stage 2 of my journey

Double Mastectomy February 2016

I had to be in hospital for Wednesday 17th Feb as I was having my double mastectomy the following day. So of course me and my sidekick headed to the hospital as I had to be there for 5pm.  On the way I said “we better stop of here at McDonalds in case I don’t get my dinner.” so we stopped and I got a wrap and we both had a coffee.

I was admitted into a side ward the nurse did my admission just as dinner was coming around.  So I obliged the offer of dinner although Id say prisoners had a more nutritional meal than what was on offer in the hospital that night, sausages potatoes and carrots.  As I was eating my dinner the Registrar came in to introduce himself and tell me he was assisting my surgeon the next day.

As we got talking about my diagnosis I told him I had requested genetic testing and because I had done so much research about my diagnosis and genetic testing he said he was delighted to find someone who was interested in it as he had just done his Phd on the subject.  Before we knew it we had been chatting for 45 minutes or so.  Just as he left the auxiliary came in to collect my plate which I had not finished, however as it wasn’t very appetising I passed her the plate.

Well if looks could kill I would have dropped on the spot.  My cousin was starving and had been eyeing up the sausage left on my plate waiting for the doctor to leave before eating it.  However as Id just told them to take my plate the sausage was gone!!!! Ooops!! lol!. I will never live that down in her eyes but we do laugh about it.

All my prepping was done through the night and the following morning at one stage they had to withdraw blood from my foot as they couldn’t get any veins in my arms, not a pleasant experience.  I was taken to theatre at 2.30pm and had a chat with the registrar I had talked to the night before.  Again they explained to me they would do a double mastectomy and remove all the lymph nodes under my left arm as there was cancer in one lymph node that we knew about.  The lab would test them all to see how many had cancer in them (the more lymph nodes with cancer the more the cancer had spread).

They also explained that they would remove two lymph nodes from my right side and test them while I was under general anaesthetic.  Do you know that your lymph nodes are like a ladder? therefore if  no cancer is found in the first two then there would be no chance of the cancer being in any lymph nodes further up.  That is why they will take the bottom two if there is cancer in them they will remove them all, however if there is no cancer then they leave them.  I don’t know whether mentioned this when I had my lumpectomy in August but I had two lymph nodes removed from my right side then too but no cancer was found in them.

After more checks I was put to sleep.  I don’t mind general anaesthetic and have never had any issues with being sick or nausea with it.  It is worrying though to think how anything could be done to you while you are under the knife.  Someone told me recently that you talk while sleeping under general anaesthetic so I’m sure if that is true the theatre staff have to listen to some sh1t.  I dread to think what I would say, although its probably the possibility of passing wind which I would be more mortified about!

I woke up in recovery and remember seeing the clock at 5.45 I slept off and on until 8.45pm.  I got more pain relief and they allowed my husband into see me for a few minutes.  I returned to the ward at 11pm and was given tea and toast, how come that tea and toast you get in hospital is always so good?  I remember the tea and toast you get after labour it was bliss.

Friday was a bit of a blur on morphine, my husband came to see me.  I had two drains coming from the wounds but they told me I could go home with the drains and go back to the ward 5 days later to get the drains out and the dressing changed.

Saturday my husband, the kids and my cousin came to collect me from the hospital.  The nurse had come in to help me wash and get into clean PJ’s so I was sitting on the armchair when the kids came in.  Again they were a bit shy at coming in the door obviously not knowing what to expect.  I carried on as normal and showed them the drains I would be carrying about for a few days.  Everyone got everything packed up for me and we headed home.

It was so good to be home I was propped up on the sofa with lots of pillows my drains sitting on the floor beside me and was waited on hand and foot.  I kept on top of the pain relief but at night it was so hard to get comfortable in bed as I had to lie on my back all night I woke up stiff and sore.

On Sunday night I wanted to get washed so my husband and cousin helped me get undressed. As we tried to get my PJ top off I took a pain like an electric shock under my arm and let out a massive squeal.  The kids had been downstairs, however on hearing me squeal had run upstairs to see what was wrong.  I had scared the wits out of them the poor wee souls, I explained to them it was ok I was just trying to move my arm but their wee faces were so shocked.  My cousin had to shower me for the next few days as I held my drains out of the water.  She has told me I owe her big time and likes to remind me that I will have to repay the favour when we are old…. although she is 10 years older than me which I like to remind her every now and then.  Oops did I say that out loud? oh dear.lol

On Wednesday we went back to the ward to get my drains out and the bandages changed.  They took off the padded bandages and just left the wounds with paper stitches which they told me I could take on in a few days.  I remember seeing the wounds for the first time and couldn’t believe how neat it was, I was well impressed.  Doing my research beforehand I had seen some horror pictures so just didn’t know what to expect although Dr J had assured me that the surgeon was an excellent surgeon.

With inflammatory breast cancer there is a high risk of recurrence within the first two years, therefore it is not recommended that you have reconstruction immediately.  So I was now boobless and would be for another 2 years, but that was a small price to pay if it reduced my risk of having breast cancer again in the future.

Two weeks after my surgery I had to go back to meet my surgeon to get the results of the pathology report.  This is the tests the lab do on the breasts to analyse the cancer see if it was ER+ PR+ HER+ etc. and determine how many lymph nodes were affected.  One thing I have learnt about surgeons is they give you as little of their time as possible. They will give you the facts then leave the room and let nurses deal with the consequences of what they have just told you.

I remember my husband and I being taken into the room by the breast nurse the surgeon came in a few minutes later.  He explained that the surgery went well and pushed a piece of paper across the coffee table to me saying  “here’s the results of the pathology.  there was no evidence of disease in the left breast (inflammatory side excellent news that means the chemo worked a treat with it and reduced the tumour from 10cm+ to nothing).  There was cancer in two of the 15 lymph nodes removed on the left side this cancer was slightly ER+  ( feeds on oestrogen).  There was a 1.8 cm grade 3, Triple Negative (doesn’t respond to any hormones or proteins) tumour found in the right breast.” (this was the lump I had discovered in January).  When he referred to the grade 3 tumour he said “but that’s the same as you had before”, just oh that’s ok then you have been here before sort of thing.  I was shocked he had just told me I had a grade 3 tumour removed but was making light work of the situation.

I was then given a letter for my GP which he told me also requested Tamoxifen to be prescribed for 5 years (for inflammatory side) and that Oncology would see me in 3 months.  I asked him about reviews with him, when would he see me again?.  I will never forget his words to me yes it was true but they struck me like I had been kicked in the stomach.  He looked at me and said “but Lynette you don’t have any breasts so you won’t get reviews at the breast clinic, you don’t need mammograms”.  At which stage I felt like punching him in the face his patronising face at that!!  He said “well if you have no more questions I will leave you in the capable hands of Laura”  He got up shook my hand at which I couldn’t even look at him he then said “well I hope I never have to meet you again, hahah”  Yes I know he meant having more surgery but at this stage I already thought he was a patronising prick so his joke didn’t go down too well in my eyes.

When he left the nurse asked me what had I not got out of the meeting as she knew from my body language and questions that I wasn’t getting what I wanted.  I don’t know whether I have explained this before but I like detail when it comes to my medical diagnosis and my treatment plan.  I know some women like to leave the detail to the doctors but I would urge anyone to take control of their treatment plan.  I have requested a copy of all my medical notes, everyone is entitled to have their own notes so don’t be afraid to ask for them.  I like to read the pathology reports analyse what they say and then ask questions of anything I don’t understand.

I have spent many months researching my diagnosis of inflammatory breast cancer, ER+ and triple negative types.  There are many support groups on Facebook which are specific to the type of cancer you have.  As I said before I had access to an excellent support group through the Inflammatory Breast Cancer Network.  We have a fantastic research doctor who specialises in Inflammatory Breast Cancer and Triple Negative breast cancer and works in the MD Anderson Cancer Centre in Houston Texas.  Anything we need to know about our diagnosis, treatment plans, trials etc. we can ask and she will provide us with clear fact.  She does not fluff it up, if its not good she will tell you, however she will also do everything she can to give us a clear steer on what we can talk to our oncology teams about.

I believe it is vital that cancer patients are armed with as much knowledge as possible to be in a position to ask questions, challenge and even make suggestions to their medical teams.  We have to stop putting Drs, Oncologists, Consultants and Surgeons on pedestals.  Perhaps in our grandparents time this was so, however when we teach our kids that everyone in this world is equal, why should we feel inferior to these professions.  I am in no way undermining the fantastic jobs they do and completely respect what each and everyone of them have done for me, but everyone needs to feel confident that they can ask questions and not be undermined or not listened to.

Just by being a member of a support network on Facebook, I have access to 120 women’s diagnosis and treatment plans in hospitals all over the UK including some top cancer units.  Therefore if there is something being done successfully somewhere else in the UK why would we not suggest it to our medical teams. Whether they can implement it is another matter and one which is a bee in my bonnet and is a frustration for the medical teams as everything is a political football and takes years to get a policy written which would allow them to do something new.

I explained to the nurse that I like detail and that I felt like I was being dismissed by him.  She explained that yes although I wouldn’t be getting annual mammograms in actual fact I had to keep a check along my scar line and if I noticed any new bumps, lumps rashes or anything out of the ordinary I should contact the breast clinic.  She gave me a folder with leaflets in it about moving on after cancer. I then asked her for a copy of my pathology report. I could see she was taken aback by this so I just said “I have a copy of all my notes, I like to read them in detail”.  She went to speak to the surgeon who agreed I could get a copy.

My husband and I walked up the corridor to meet my cousin.  I was in a bit of foul form so my  husband told her about the meeting and said he was embarrassed at one stage because I switched off to the surgeon during the meeting and my body language was really telling that I was peeved off.

In the car I started to read the Pathology Report and analyse what it meant.  I said “I wonder will I be getting anymore chemo” to which my husband and cousin looked at me confused and asked why I thought I needed more chemo.  I said it was because they had removed a grade 3 tumour.   I knew they didn’t understand my concern.  The next day I rang Dr J and asked him would I be getting anymore chemo.  He said no.  I said well you removed a grade 3 tumour last September and I was told because it was a grade 3 tumour I needed chemo so why am I not getting more chemo?  His reply was “Lynette, because you have had it and it didn’t work.”  I said “yes I’ve had one kind and it didn’t work why not give me something which does work”? He told me that it wasn’t normal practice to give more chemo in this setting i.e. until there is more cancer then they wouldn’t give more chemo!

For days I ranted about this and know that my family couldn’t understand why I was getting so frustrated about it. As far as they were concerned the cancer was gone so why would I want more chemo?  To them it was good news which yes to me the inflammatory cancer treatment had been a success, great news, but the recurrence I had in January was an aggressive tumour.  Yes it had been removed via the mastectomy but I felt I needed to blast whatever cells had been left from mastectomy with a different type of chemo, hopefully one which would work for me.

Finally my family understood the reasoning behind my madness and agreed they would fully support me in whatever I decided to do.  Through my support network I was advised that I was entitled to a second opinion from another medical team.  After mulling this over for a few weeks afraid that I would step on peoples toes or offend someone, I finally decided that this was my life vs professional judgement.  It was too important a decision and major consequences for me to be afraid of upsetting people. I knew if I didn’t get the second opinion I would always wonder if there was something else I could have had or done to prevent the cancer from coming back.  So I phoned Dr J’s secretary and left a message that I wanted a second opinion at the Royal Marsden Hospital in London.

and so the story continues………

 

 

 

 

 

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