Last Day!

So tomorrow is surgery.

I’m feeling very anxious – kind of like before a big presentation, with huge butterflies in your stomach (hopefully it doesn’t last all day – as I’m writing this it’s only 7:30 am).  I plan to keep writing all day and post this just before bed – so this is likely to be very disjointed.

First thing, I woke up at 6 this morning and really needed to pee.  It was actually kind of nice to have some real time to myself this morning – although the kids are really good at keeping me distracted.  I think of the other day and the poop explosion, I definitely wasn’t thinking about cancer or surgery at that time.  But getting E this morning was hard, as I lifted her from her crib I realized it was the last time I would do it for a while.  It feels like it’s the last time for everything which is sad – things are never going to be the same as I’m going to lose feeling in my boobs so hugging and holding the kids will never feel the same.  E is currently playing on the floor after playing with me (and kicking me numerous times in the chest) and we are waiting for M to wake up.  That girl LOVES her little blankets and soft things – SO DIFFERENT from M who really couldn’t care less about most toys and never showed any interest in (most) soft things.  Although M did have a favorite little stuffed (expensive – it came from France, the only thing in the store my mom felt she could afford) caterpillar.  He lets E play with most of his things, but when he sees her with that caterpillar he comes over and snatches it out of her hands announcing mine – which technically is correct but he’d been ignoring it for months.  It will be interesting to see how he reacts when E starts moving and gets after his toys more aggressively.

So it’s now almost 11 – the day went by really fast – and I definitely don’t feel ready for tomorrow, but I’ll be glad when it’s done.  To say goodbye to my boobs we had the kids, try to, paint on them.  I found an on-line recipe for baby paint, unfortunately it didn’t’ turn out very well but M had a lot of fun.  We told him that my bobbies were going away because they were bad, so he said goodbye and gave them a kiss.  E also feel asleep in my arms after her night bottle – she hasn’t done that in months, so it was really nice.

The injection of the radioactive tracer itself wasn’t hard.  I arrived 15 minutes early as instructed and then they were 30 minutes late, so 45 minutes sitting there for a procedure that took about 15 minutes.  They inject a combination of tracer, saline and lidocaine in the affected breast near the nipple – it stung going in but I guess the lidocaine kicks in quickly and by the time she removed the needle I didn’t feel anything.  I was then put in a SPECT-CT scanner while the technician took photos to ensure the tracer was working.  When she was done I waited about 2 minutes while she checked with the doctor to ensure the photos were good and then I was free to go.

I’m not off to try to get some sleep – we have to be at the hospital for 6:15, which is supper early for us, but at least I won’t have time to worry about being hungry.

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The joys of toilet training

So toilet training isn’t going so well, M does well one day and the next can’t be bothered.  In fact this morning I put him on his potty after breakfast, he peed and then announced he was done.  So I got him off the potty and less than 30 minutes later I realized he was quiet, so I asked if he needed the potty and he said yes.  I quickly got up from the table (feeding E her breakfast) and moved towards him.  As I rounded the corner he was running towards me – pooping as he came, what a mess!  I immediately scooped him up and took him upstairs for a through cleaning – he had poop all down his legs and feet.  My husband got the job of cleaning the floor – fortunately he only got a bit on the runner by our front door and the rest was on the hardwood.  Although the carpet has been hosed off and is currently outside drying – hopefully it will actually dry, we live in Ottawa, Canada and with the humidity it’s going to be over 40 degrees here!  It wasn’t even this warm during the summer.  He has also started stating that he needs his potty after he is in bed for the night – we don’t want to discourage him but he sits there forever, rarely gets results and then he’s asking again a few minutes later.  Hopefully the novelty will wear off soon and he will only ask if he actually needs the potty.  Actually I would like if he would ask during the day – I have to constantly ask/remind him to use it.  In fact, most times I just put him on it when I feel it’s been long enough, so a little warning would be good.

E is really enjoying her solids, we have recently started to give her small pieces of what we’re having for dinner instead of her usual mush.  Like M she LOVES fruit (I highly recommend those little bags on a stick for babies – I can give her bigger pieces and not worry about her choking).  She is turning into a cute little princess who loves her big brother.  In fact, she had her first sleepover at Grandma’s last week – fortunately everything went well but I did miss her.  It was the first time I had been at home without any children in a REALLY LONG time.  The house seemed so quiet – I had the TV on for most of time for the company.

BRCA and the news media

So I was diagnosed with a BRCA-1 mutation in early (January) 2013 and in May 2013 Angelina Jolie announced that she had a double mastectomy after testing positive for a BRCA-1 mutation.  Hooray – it is now in the mainstream – BUT I hated the coverage.  They made it seem like getting tested is a simple procedure.  And as I sat there and watched and thought – the only reason I know I carry a BRCA mutation is because my sister DIED.  I didn’t qualify for testing until she got cancer.  Just for reference my experience with genetic testing is with the health care in Ontario, Canada.  I went through the long genetic counseling appointment where they go over your family history in detail.  I didn’t qualify – but they did test my mom for Cowden syndrome, fortunately she was clear.  But a lot of the coverage seemed to indicate that all you had to do was approach your doctor and request the test.

cdr746227-750.jpg

https://www.cancer.gov/types/breast/hp/breast-ovarian-genetics-pdq#section/_1

The above pedigree is similar to mine – paternal grandmother (70’s) and aunt (40’s) died of breast cancer (or it’s complications); but they are the only female relatives on my dad’s side that we knew.  My grandmother was a war bride – many of her siblings died in the war and she wasn’t close with those that survived the war.  So not enough relatives diagnosed with cancer to qualify for testing – this is common from what I have found in my BRCA support group – either they qualified for a special study, they were diagnosed with cancer themselves or a close relative was diagnosed with a BRCA mutation.  I don’t think there was a single person there who qualified based ONLY on family history.

Although if you are willing to pay $168 USD you can get a saliva test kit delivered anywhere in Canada.  This program is run through the Screen Project: http://thescreenproject.ca/

It’s now 2017 and most people have forgotten the story.  In fact, it’s kind of sad but when I told people about my surgery (before my cancer diagnosis) they were kind of like ok, no big deal.  But since the mastectomy is no longer prophylactic people are much more likely to be like poor you, that’s too bad, ect…  But honestly the treatment is likely going to be the same – I likely won’t require chemo or radiation unless the cancer is bigger than expected or it is in my lymph nodes.  Recovery will be similar – although I will have lymph nodes removed which may result in lymphedema – but this really seems to be the only extra possible complication.

 

My cancer – this is long and gets a bit technical

So my meeting with the surgeon went well – there is a lot of information that will have to wait until the full pathology is back – but we already got some important info.  The best news is the cancer is small 5 x 5 x 4 mm – basically the size of a grain of rice, no wonder no one could feel it.  I’m still shocked they even managed to find it – but I guess that’s the point of these screening efforts, be it mammogram, MRI or ultrasound.  It is a mix of in situ and invasive cancer:

  • Invasive ductal carcinoma with apocrine features, Nottingham grade 2/3 (glandular differentiation 3/3, nuclear atypia 3/3, mitosis 1/3), Ki-67 approximately 20%, ER negative, myoepithelial cells absent
  • Ductal carcinoma in situ, apocrine type, with intermediate to high nuclear grade with probable comedonecrosis

Apocrine type is actually a rare type of cancer, usually seen in approximately 0.3 – 4% of all breast cancers (lucky me beating those odds again).  In this form the cancerous cells resemble sweat glands – but aren’t actually sweat glands.  They also tend to be triple negative cancers – this is also a feature commonly seen in breast cancers of those with a BRCA mutation.   A triple negative breast cancer (TNBC) means that the common receptors which fuel breast cancer aren’t present and hormonal treatments are unlikely to be useful in treatment.  This tends to make these cancers more difficult to treat as when cancers are hormonal positive it means that by depriving the body of those hormones (through a combination of medication and surgery – ie removal of ovaries) the growth of the cancer can be retarded and even halted.  Resulting in better long term prognosis with all other factors the same.

apocrine-breast-cancer-cells

http://breast-cancer.ca/apocr-canc/

Nottingham histological grade is a measure of the ‘aggressiveness’ of the cancer.  It is determined based on the cumulative score of the level of glandular differentiation, nuclear atypia and mitosis – each is given a value of 1 to 3, the results are added together and your cancer is given a grade of I, II or III.

Glandular differentiation is basically a measure of how different the cancer cells appear from normal glandular tissue – I scored a 3 on this scale with indicates that less than 10% of my cancer cells are forming glandular like structures.

infiltrating-ductal-carcinoma-abortive-tubules

Grade 3 glandular differentiation: http://breast-cancer.ca/idcgradeys/

Nuclear atypia is basically a measure of how different the nuclei of cancer cells appear to regular cells – I scored a 3 on this part which means that my cells exhibited marked differentiation with regards to shape and size.

infiltrating-ductal-carcinoma-highlyvariable-nuclei

Grade 3 nuclear atypia: http://breast-cancer.ca/idcgradeys/

Mitosis is a measure of how much the cancer cells are dividing (how fast they are reproducing) – I scored a 1 on this scale indicating the cancer cells are not growing very fast.

infiltrating-ductal-carcinoma-mitosis

Grade 2 mitosis: http://breast-cancer.ca/idcgradeys/

This gave me a total of 7 on the Nottingham histologic grade – which translates to a cancer grade II.  A score a 5 or less is Grade I, 6 & 7 are Grade II and 8 or 9 are Grade III.

Ki-67 is used to estimate the cell growth of the cancer cells – the more Ki-67 present the more quickly new cancer cells are forming.  A Ki-67 above 20% is considered high; therefore, I’m right at the upper limit of borderline of a high reading.

The lack of myoepithelial cells is an indication of invasive cancer.  Myoepithelial cells are common and are used to squeeze glands – so they are found in breasts where the squeeze out the milk from the secretory cells into the ducts.

breast-myoepithelial-cells

http://breast-cancer.ca/myo-cllmrks/

In DCIS comedonecrosis is an indication that there has been cell decay and/or death.  It is also an indication that the cancer is of a higher grade and more aggressive than others.

comedo-breast-carcinoma-insitu-2

http://breast-cancer.ca/comed-carc/

Phew – this is a lot of information but I think it’s helped me to write it out.  About a week and a half until surgery and I’m definitely not ready – although I think it’s very hard to ever be ready for something like this.  I don’t think I’m really nervous about the surgery itself, it’s more dealing with the kids – I won’t be able to lift them for 6 weeks!  In addition, holding them will never feel the same which I’m dreading.  I’m very anxious for the full pathology report – which I should get on my birthday – what a great 40th BD gift!  I’m hoping it’ll be the best gift ever.

The information on this post was gathered from:

Prophylactic versus cancer mastectomy

So first a continuation of my kind of luck – I got my first period since the birth of E ten months ago yesterday.  And with the new change in schedule I will likely getting the next one right after surgery = awesome!

So my husband and I met with the surgeon yesterday and surgery is now scheduled for September 28, so exactly a week later.  Fortunately, for the most part the surgery and recovery are the same.  I even get to keep the plastic surgeon – this is a relief as although I didn’t form a rapport with her she seems competent and everyone says she does a good job – which is the most important part for me.  So the changes for cancer versus prophylactic mastectomy are interesting.  First in Ottawa cancer surgery can not be done at the Riverside Hospital – so the location for my surgery has changed which has actually worked out for us as we are now at a hospital that is a bit more convenient.  But the biggest change is that I now require a sentinel lymph node biopsy – this is to ensure that the cancer has not spread beyond the breast.  My doctor expects this pathology to be clear – but considering our luck and how often we seem to be those 1 in a million we aren’t going to be happy until we have that clear pathology report in front of us.  In a sentinel lymph node biopsy I go in the day before surgery so a radioactive dye can be injected into my breast.  The next day, during surgery, a blue dye is injected into the breast and the surgeon then uses a geiger counter to determine where the tracer went and the blue dye allows for precise location of the lymph nodes – it’s a pretty neat procedure.  Plus I get the added bonus of peeing (and pooping) blue for a few days as the dye makes it’s way out of my body.  And this is the silver lining in my case – if they had found any invasive cancer (the in-stu cancer isn’t a concern as it can’t spread beyond it’s original location) in the pathology of the breasts after their removal I would need a complete lymph node removal.  Yes, after a mastectomy because there is no breast tissue available a sentinel lymph node biopsy can’t be performed as the tracer would have no tissue in which it could travel and instead they are forced to remove your complete underarm lymph system in a new surgery.  So although having cancer sucks I’m extremely thankful to that radiologist who found this lesion.

Why me?

Like I’m sure every one who has experienced something bad I ask why me?  As an added bonus guess who some how managed to catch a cold and not from one of her children.  We have decided that I’m no longer aloud to get colds as the last cold I had was when I was pregnant with E and before that it was when I went into hospital for induction with Ava.

Why Thought Bubble Means Think About It And Reason

But then I think of how I got to this point and all I can think of is Nicole  and how much I wish I could speak with her.  She would have been the third person (or maybe second to know) – husband would be first and she and my mom would be in close competition for second (although my mom found out first as she was here when I got the call).  Nicole paved the way for me – I wouldn’t have been receiving any screening at this stage if she hadn’t been diagnosed.  I’m not yet 40, but will be come October, and before her diagnosis my risk wasn’t deemed high enough for intensive screening – stupid OHIP waiting for more family members to die so you can be tested.  So yes I have cancer but it was caught so very early and is the most common kind of invasive breast cancer (unlike the inflammatory breast cancer my sister was diagnosed with) those were comments one my surgeon kept reiterating yesterday.  But my thoughts cycle back to my sister – like most loss the pain never goes away but does fade somewhat with time and this diagnosis has brought back a lot of that pain and I think in some ways that is the hardest part of this – I feel closer to my sister than ever (with this shared diagnosis) but she isn’t here to share.  So I think I’ll hug my kids, husband and mom extra hard today.

I also think why my parents?  They are the best – always willing to help (in fact they moved to be with my sister after her diagnosis and lived with her until her death).  And as a parent myself, with a loss already, I can’t imagine losing one of my children, it hurts just to think about it.  They definitely didn’t deserve saying goodbye to one daughter and now their only remaining daughter has announced she too has breast cancer.  I’m nervous about seeing my dad for the first time since this diagnosis – I know Nicole’s death was devastating for him as not only did he watch his daughter die a painful death but he knew that he had passed on a genetic mutation which increased her risk of getting the disease which killed her and now I’m adding to that burden.  I know my mom is seeing a psychologist and I hope my dad goes back to the one he saw after his discharge from the mental hospital.

I guess the bright side of all this is that with the mastectomy I now qualify for all the support available for breast cancer patients – unlike before where I would have experienced something very similar with little to no extra support.

Just to warn you I’m likely to be writing a lot in the coming days – I’m finding it very helpful to get things down even if they aren’t making much sense and I’m likely to post things without much thought.

I have cancer

Yeah so that ‘prophylactic’ mastectomy is no longer prophylactic.

I called today about my biopsy results – at first they didn’t know what to do with me as the breast health center doesn’t provide results over the phone and I currently don’t have a family Dr (in a twist of irony I’m meeting with one on Monday) so they weren’t sure who would be able to give me my results.  So they made an appointment for me with my breast surgeon for Monday – I quickly realized that I wouldn’t be able to last the weekend knowing the results were sitting on someone’s desk but I didn’t know.  So I called and basically pleaded with the secretary that I needed to know and then the surgeon called and said that she doesn’t like to give results like this over the phone but the biopsy was positive.  I think I’m still in shock – all I can think of is the technician stating that they have never found anything on a screening ultrasound.  Also, my lesion had a BI RADS score of 4a – basically the lowest rating for which they do a biopsy with a 2 – 10% chance of malignancy.  And the lesion was on the cusp of even being too small to be seen.  In fact, the Dr. doing the biopsy was surprised that they even found it on the screening ultrasound as it was so small.  Once again I have beaten the odds and I’m getting sick of doing so (unless I win the lottery and then I might be happy).

I meet with the surgeon on Monday to discuss the game plan – unfortunately at this point the mastectomy on Sept 21 is cancelled as the hospital I was to have it done at doesn’t do these operations for people diagnosed with cancer – something to do with no pathologist available.  But my surgeon said she’d try to schedule something within a week of that date.  All I know at this stage is that I have an invasive ductal carcinoma (grade II) with ductal carcinoma in situ as well.  Hopefully I’ll have a better idea of what to expect on Monday.