I hate them all, these doctors – who make you stand fully naked in front of them, until your nipples harden and your fingernails go blue because of the AC. And only then, when you mention it is chilly, they suggest ( from their warm jacket and shirt) they could take a cellphone photo and discuss it that way.
Evie is the absolutely light of my life.
Yesterday we were dancing (to Duran Duran), wrapping presents, and doing LEGO. I said to Evie, “You’re a cool kid”. She flung her arms round me and said “You’re a cool Mummy”.
I think it’s the best compliment I have ever had!
The short: First surgery is Monday. Double mastopexy, partial mastectomy. I am fully supported by friends and family, and Evie just gets more and more of a joy to be with every passing day.
The long: I was actually feeling pretty great going into this week. We got COVID tested and Amy moved in with me to learn the ins and outs of Evie’s home-schooling, daily routine etc. It has been going REALLY well. Evie LOVES Auntie Amy! (Although I think Auntie Amy is still in shock about the home-schooling situation!)
The plan has flip-flopped quite a few times since I last posted here (which, I’m beginning to understand is very common for cancer, and is its own kind of special hell in terms of planning, or any kind of serenity or peace of mind), but I am happy with where it ended up (double mastopexy, partial mastectomy, full pathology, and then decide what’s next. Dr Mukhtar called it “the most conservative plan, with the least downtime, allowing us to get the most information on the tumour, and a 60% chance of clear margins, and only reconstructive surgeries left to do.”)
This week has been full of pre-op appointments: several a day, every day. I was busy but energized. Then after another mammogram today, and during an ultrasound (where, incidentally, they couldn’t find one of magnetic markers they placed during a biopsy), they mentioned that they had never received the MRI from PAMF. I was flabbergasted. The MRI was 2 months ago. When Trevor and I saw those results, the surgeon was very clear that the “contrast view” was very bad news indeed. I was very surprised that I would have a treatment plan at UCSF without them having seen those results.
I emailed Dr Mukhtar and asked her, and she replied that she HAD finally received those results yesterday, but that they were not what she was expecting. (She said she had requested the results from PAMF, but not received them – and nobody had ever followed up to make sure they had all the data.)
Now that she’s seen the MRI, the prognosis is not as good. I’m still in no danger of dying – so all of this is just a massive inconvenience, but seriously FUUUCK!!
Once she saw the MRI, she realized there was at least 9mm of tumour and that she will have to take a lot more tissue than originally planned. It also means there’s much less chance they will get clear margins.
There is NO option for a single surgery.
I asked why can’t they go straight for a mastectomy? She said they _could_ but there is still a 20% chance they won’t get clear margins and/or cancer could be in the lymph nodes. She also doesn’t think you want to recover from the DIEP full mastectomy, and the mastopexy and THEN have to do chemo right away. It’s a huge recovery and chemo is very draining. (Most people do chemo first, then their surgeries, but since mine is Lobular cancer and isn’t likely to shrink much, they would do mine in a different order.)
She wants to get the pathology on the tumour asap as they still know so little about it, so she can get it to the oncologist.
There is some advantage in doing systemic therapy (hormone blocking and chemo therapy) BEFORE the full mastectomy. You can’t do the pathology on the tumour if you have done chemo. So you have to do a surgery first.
So, there are really 2 options, continue with the plan, knowing we are very likely to do the mastectomy later, or do the mastectomy and the DIEP straight away (saving a surgery). She continued to reiterate there is SOME chance we could get clear margins this time, but much less than before she saw the MRI.
My concern is that with the amount of tissue she will now have to take out of the left breast, Dr Piper will need to take the same amount out of the right so they match (just in case margins are clear). But if margins aren’t, and the next surgery is mastectomy, now there isn’t enough belly tissue for both boobs and DIEP is no longer an option. Dr Mukhtar agreed this is very likely – and that they will probably now need to do 2 surgeries on the right (healthy) breast as well. (They wouldn’t need to do this if I went straight to mastectomy and DIEP in the beginning, which was her original suggestion.)
I asked her specifically what she would do, and she said she didn’t know.
Given that it’s too late to change course, and do the mastectomy and the DIEP Monday, she said she would probably just go ahead as planned, get most of the tumour (again MAYBE all, there is always hope) and then do the pathology and decide what is next. If we do this, they will have pathology results the soonest and really know what they are dealing with. It does mean more surgeries than if we reassessed and maybe did full mastectomy first.
So basically: continue the current plan, but now with reduced chances of a positive outcome – but a way to get the pathology results the quickest. The most likely course is now the double mastopexy, skin and nipple saving partial mastectomy, then chemo/hormone therapy, THEN mastectomy, DIEP, reconstruction (both breasts), then the 5 years of hormone therapy.
They won’t reduce the right breast to match the left as assumption is there will be a mastectomy and a DIEP at some point, and there isn’t enough belly tissue to fill up both breasts. Breasts will be unequal but not as bad as if they reduced the right to match the amount of tissue she will take out of left.
She said if she was to guess, she would imagine at least 2 surgeries, plus cosmetic reconstruction surgeries after this.
I can’t say I’m thrilled. I’m mostly unhappy to have this all sprung on me 5 days before the surgery. I’m also bummed that it will mean 2 surgeries on the right (healthy) breast (further trauma to that tissue and nipple). It also means another 6-week recovery, that might have been avoided if they had looked at the MRI results earlier.
But on the whole, I think I am resigned.
I have been referencing one of Evie’s toddler books a lot: Going on a Bear Hunt. “Can’t go under it. Can’t go over it. Got to go through it.”
So here I go!
I didn’t realize I loved this flawed body, until I realized I was about to lose it.
If I only I had appreciated it. Of course the only thing that matters is getting the cancer out, but God, I hope I look like me afterwards.
I didn’t want to post this on facebook, but I did want to honour how bloody amazing my friends are!
Friends set up a website for my cancer journey. They organized gifts and donations, stickerbooks and LEGOs for Evie. Friends brought flowers, and sushi. Friends help me with errands and accompany me to surgeons’ appointments. Friends made me fridge and freezer food and homemade treats!
I’ve been so amazingly touched by people reaching out, and friends (old and new), stepping into to help, or just let me know they are there. And especially to Amy and Dona, both of whom will help me at various times in the weeks after the surgeries – and to Steve who is always there, fixing things, baking, playing with Evie.
There a time when I would have shuddered at the word “community”, but wow do I have a good one.
I am a very lucky girl.
He cracked me open