An Update, Good News, and the “Aftermath” of Cancer

TL;DR: Healing from surgery is great, pretty much done there.   I’ve learned some good news about probability of recurrence and am feeling positive there.  Menopause still stinks – lots at work there.  (There are lots of great specialists here, feel so lucky!)  Still struggling a bit with mood & sleep, started some new medications which are helping, but not cure alls.  Thank you to all for your continued support, care, and prayers, I am so grateful! We will be planning a party at some point…stay tuned!

*****

Hi everyone, thank you for your patience with the lack of update for quite some time.   Well, we’re done.  I mean kind of done.  Done with treatment & reconstruction anyhow.  Now we monitor and work through the aftermath.  

Thank you to all of you for your care, support, and continued investment in my physical and mental well-being.  I’m so grateful to each and every one of you for your support, love, and prayers!

This “aftermath”, it’s a strange thing, I don’t know what to do with it honestly.  If I’m truthful, I haven’t posted because I’ve really been struggling with what I would write, and somewhat struggling in general. So, I’ll start with an update.

(also, thank you for your patience, this is a quite long post!)

I’m pretty much recovered from the reconstruction surgery.  I’m fairly happy with how things have turned out.  Things don’t look as they did, but they were never going to.  It’s close enough – things look pretty good all things considered.  The surgeon mentioned I might need to do some fat grafting but we’ll see.  I’m not sure I’ll feel like the anesthesia & pain meds are worth another surgery – it will be interesting to hear his recommendations when I see him in September.  My scars look really good and I’m really glad I had the plastic surgeon remove the port because he did some work there that means the scar doesn’t look nearly as bad as it did before which is nice.  (I didn’t even think about that when he offered…)  This is nice because you can see this scar depending on what my neckline looks like and it looks a lot better than it did post “install”.  (It’s still a little gnarly, but at least it’s not like a zipper/Frankenstein scar like it was before…)

Menopause continues to stink.  I know that it’s not awful for everyone, and I’m thankful I haven’t had too horrible a time with hot flashes.  (Although that might change with Hormone Replacement Therapy (HRT) stoppage if  I do that…I did have them!)  However, the anxiety and insomnia are still here.  It’s been hard because the anxiety is so physical vs. rumination.  (Although, it’s me, still plenty of rumination…) I give so much credit to all those I know and love who have struggled with it for longer than I have.  I had no idea about the physical side of things in addition to the mental side of things.  I’m so sorry!  

I started Lexapro and it has helped.  It has not cured all though.  I also re-started the sleep medicine but have cut it in half recently and hope to get off of it soon.  It’s definitely not something I want to be on long term.  Although it’s currently working.  

I have continued to push back on the “you shall not have Hormone Replacement Therapy (HRT) if you have had breast cancer” mentality that is widespread in medicine right now.   From my perspective it doesn’t make sense in my case since my cancer wasn’t hormone receptor positive.  The challenge is that there is very little data and the data there is, is fairly inconclusive regarding Triple Negative Breast Cancer (TNBC).  (As a refresher, TNBC means that the cancer doesn’t have hormone receptors or HER-2 protein receptors.)  It’s also not clear in those studies what surgical interventions the participants had.  To that end in the last couple of months I have seen:

• A menopause certified Nurse Practitioner (NP) who is a hormone receptor positive breast cancer survivor (and on HRT)
• A co-lead of Women’s Cancers at City of Hope in Duarte (an oncologist)

The menopause NP said that the dose of HRT I had been prescribed was rather low and would never have given me a chance to know if more estrogen would have helped my symptoms.  She would have prescribed double the dose I had been on at my highest point.  She also said that if I could get an oncologist to offer approval she would prescribe estrogen only therapy at the higher dose for me.  She gave me the name of the oncologist she saw who agreed it made sense for her to re-start her HRT.  (Who happened to be the person I saw…)

I have seen/asked all the doctors.  My oncologist and my breast surgeon both highly discouraged me from HRT.  Although my oncologist said he thought it might be worth me seeking a second opinion who also happened to be the person noted from the NP above.  My primary care physician said that it was a risk/benefit decision but he didn’t have too many concerns with it.  He directed me to an OB/GYN.  My OB/GYN agreed with the surgeon who prescribed it originally and then changed her mind when she heard what my “regular” oncologist said.

After my current oncologist kindly wrote a referral, I saw the “new” oncologist.  The “new” oncologist was extremely interesting.  She indicated that there had been a study recently released by City of Hope indicating that women on HRT had less likelihood of breast cancer than those without and that as a TNBC survivor I would likely be more closely related to that group than not.  She also gave me some interesting notes on my probability of recurrence.  (I had admittedly, been too afraid to ask…)  

• If you have the BRCA1 gene mutation, like I do, you are most likely to get TNBC (BRCA2 generally implies hormone receptor + breast cancer)
• If you had a PCR (pathological complete response) with TNBC you are very unlikely to have a recurrence – I did have a PCR
• If you don’t have a recurrence within 2-3 years you are very unlikely to have a recurrence – I’m at about 1.5 years since surgery – ½ way there
• If you had TNBC, if you have a recurrence it’s 90% likely to be TNBC again vs. flip to hormone receptor positive cancer (from my “regular” oncologist)
• Admittedly there is hardly any data on how HRT impacts any of these outcomes

So in short, quite good news in my opinion.  I am feeling very good about likely not having a recurrence.  WOOHOOO!

She also had some very interesting thoughts about the HRT.  She basically said that she thought it was worth trying the estrogen only therapy and seeing what happens.  She also said that progesterone was really bad for women wrt to breast cancer and advised heavily against that. She also said that menopause symptom management was how she spent about 50% of her day and that chemical/surgical menopause was particularly really awful.  (I can relate to this….) She prescribed the high dose of estrogen and told me to come back in a month and talk about it.  I was shocked.  I felt very validated with how I’m doing and how I’m feeling and grateful to at least be able to try the higher dose of estrogen.  Very surprised that she was not only ok with it, but prescribed it.

So, I’ve been trying it.  My psychiatrist thought it would work quickly.   (Within a few days…) I was hoping for a night/day change honestly.  That was not my experience.  I do think it has helped, but it took a couple of weeks to really feel that way and while it was a definite change it wasn’t the massive step change I was hoping for.  I’m still thinking about how I feel about it in advance of my next appointment.  

Lots to think about.  I’m sure many of you are wondering why I would even take the risk after going through all of this.  I have thought that as well, but quality of life is really the issue here.  I just need to figure out if the quality of life change, for me, is significant enough to warrant the risk.  (The numbers from the one study available seem to imply a 3-4% possible rate of recurrence, but again, surgical state of study participants is unknown, and it’s not known what the relative increase is.)

The one thing I have learned after all of this is that you can pretty much slice and dice the data in any form you want for any outcome you want and studies tend to look at the relative probability vs. the absolute probability.  Makes me want to learn more about statistics. 

I suspect many of you are wondering what this all means from a quality of life stand point.  Well, the insomnia is much better due to the sleep medication – but that’s not really a long term solution in my opinion; these drugs aren’t great.  The anxiety is more manageable,  but definitely still present and quite real.  The cognitive impacts are tough.  It’s harder to focus, my word recall is less, my memory isn’t as good, and I don’t handle stress in the same way I used to.  It’s harder to do things than it was before.  We’ll never know how much of this is the menopause vs. chemo, but it’s a definite change and that’s hard.  I was used to operating differently and it’s taking time for me to figure out that 1. I need new strategies to handle this and 2. What are those new strategies.  

I spent much of treatment looking forward to how things would “go back to normal” when I was done.  I was expecting that to have happened by now.  I realize now that wasn’t a terribly realistic expectation.   This is a long term shift requiring long term solutions and creativity.  It’s definitely a process… and not a short one.

We’ve been talking about the grief associated with this change in therapy and that is very real.  I’m still in a little bit of denial and working through that is hard.  More to come.  

I’ve also joined a young survivors cancer support group.  It’s been so helpful!  It’s been so validating to hear from other people in similar situations that this part of cancer (the aftermath…) is so hard and they are feeling many of the things I am.  In some ways it’s harder than treatment was.  Very validating and it’s a wonderful and incredibly supportive group.  I’m grateful to have found them!

As far as work goes, I am back at work full-time.  I’m very grateful to the team who supported me going back part-time in late April which was what I needed.  I went back full-time in June and it’s been good, but I am definitely tired at the end of the day.  It mean so much to have so many wonderful colleagues who are so kind and supportive.

What’s next you may be wondering.

Well, more doctors appointments.  So many doctors appointments.

From a cancer standpoint my regular oncologist is doing CT scans every 6 months and likely will for another year or so.  I see him ~every 3 months for a physical exam as well as the breast surgeon every ~4 months – so lots of physical checks.  I may also get an MRI before the end of the year.  

I’ve also seen a sleep specialist and she has referred me to an insomnia clinic who will, I’m hopeful, help me wean off the sleep medication successfully without rebound insomnia.  She’s also referred me to a sleep study to check for sleep apnea because lack of progesterone is a significant factor there.  (And given me a few other suggestions…)

I’ve also made an appointment with the UCLA menopause clinic.  I couldn’t get in until November, but I’m looking forward to having a conversation with a physician there who specializes in menopause and see what she says.  

I’m going to keep pushing until I think I’ve exhausted all the expertise I can find and fully formed my own opinions.  I feel so lucky to live in an area where I feel that’s somewhat easily done.  There are drives involved but not ones that are too terrible.  (And the insomnia clinic is virtual!)

My posts are likely to be more infrequent, but I will admit that they are very therapeutic for me to write so likely will still continue.  Thank you all for continuing to follow along and offer your support and contribute to this journey and healing.  I’m forever grateful and it means so much, thank you! We will be planning a party at some point…I’ll be looking at days in the Fall. 🙂

The now “standard” note at the end of posts for website navigation help:

Thank you for taking time to keep up with us and see how we’re doing as well as all the help!  Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone.  If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page).  There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages.   Please know that reading this page and thinking of us is help!   Thank you for your support in all forms! If you have any issues, please email [email protected].