Excellent MRI Results, Genetics, Surgery, Next Steps, and a Side Effect or Two I’d Like to See More Openness With    

I had some appointments this week that have helped define the next steps in my cancer treatment and wanted to share what I’ve learned.  This will require discussion of some items that I’ve been thinking about how to write about for a long time and now the time seems right to discuss them.  This is a very long post…don’t be afraid to read it in chunks! ?

FYI:  The topics in this post may not be something all of you want to read, but I’m happy for you to know if you want to.  Take a look at the TL;DR and make a call on things you may want to skip.

TL;DR: I had an MRI this week and my surgeon declared that I had a “radiologic complete response”, which means the cancer isn’t identifiable on the MRI anymore.  YAY!  We won’t have the final results until surgery, but this is FABULOUS news.  It is the first step in being declared “cancer free”!  I have a genetic mutation in my BRCA1 gene which puts me at higher risk for breast, ovarian, uterine, melanoma, and pancreatic cancers.  I’ll be having a bi-lateral mastectomy with implant reconstruction.  I’ll also be having my ovaries removed at a later date.  I will likely also have radiation treatment and reconstruction can’t happen until 9 months post radiation treatment completion.  Side effects we should talk more about from chemo: chemo brain & chemical menopause.

Fabulous MRI Results

I had an MRI this week and my surgeon declared that I had a “radiologic complete response”, which means the cancer isn’t identifiable on the MRI anymore.  YAY!  We won’t have the final results until surgery, but this is FABULOUS news.  It is the first step in being declared “cancer free”!  I am beyond excited even if I have to still do the last chemo treatment.  Thank you to all of you for your prayers and positive healing thoughts…they have been positively answered!! 

Genetics

The next topic is genetics.  One of the things that surprised me about my cancer diagnosis is that I am so young.  I won’t give my real age here since this is a public internet site, but let’s just note that I’m in my early 40’s.  Given my age and type of cancer, one of the first things that was recommended was genetic testing.  At first I didn’t want to do it, but after talking with a friend who has fought breast cancer I did decide to do the testing.  

I didn’t want to do the testing because I was afraid of future health insurance discrimination…there are currently protections for this federally and in CA so I’m more comfortable with this now. (Let’s hope these protections stay in place…I would be in a world of hurt without them!)  It’s worth noting that my current treatment, without health insurance, would have drained every resource we had nearly immediately because the costs are so high…we are very lucky to have the health insurance we have and its coverage of the cost of my treatment.  (Also, I’m likely never going to be able to purchase extra life insurance ever again.)

I also didn’t think that the genetic testing would yield any information – there’s not a strong familial history of breast cancer in my family tree, 1 person, and their cancer was at an age where it wasn’t “early”.  

First a note on what the genetic testing does because this is all information that was new for me.  We all have genes that are supposed to suppress cancer, the genetic testing is looking for mutations in those genes that cause them to not work properly and so therefore they don’t suppress cancer like they are supposed to.  As an example, everyone (male and female) carries the BRCA1 and BRCA2 genes, but if you have a mutation in these genes your probabilities of getting breast, ovarian, uterine, prostate, melanoma, and pancreatic cancers is higher compared to the general population that has a correctly working, non-mutated, copy of the gene.

My genetic testing was done via a blood draw and I was tested for mutations in 36 genes related to cancer suppression including BRCA1 & BRCA2.  

There was a mutation identified in 1 gene, the BRCA1 gene.  When the results were relayed to me I was told that it would have been very unusual for me to have my type of cancer at my age without this genetic mutation.  The BRCA1 mutation generally indicates a higher probability of cancer occurring vs. BRCA2.

So what does it mean that I have this BRCA1 genetic mutation?  This one is a pretty “famous” mutation thanks to Angelina Jolie.  

Per the CDC:

“Not every woman who has a BRCA1 or BRCA2 gene mutation will get breast or ovarian cancer, but having a gene mutation puts you at an increased risk for these cancers.

• About 50 out of 100 women with a BRCA1 or BRCA2 gene mutation will get breast cancer by the time they turn 70 years old, compared to only 7 out of 100 women in the general United States population. (Kat calculation: 7x more likely)
• About 30 out of 100 women with a BRCA1 or BRCA2 gene mutation will get ovarian cancer by the time they turn 70 years old, compared to fewer than 1 out of 100 women in the general U.S. population. (Kat calculation: 30x more likely)

If you have a family history of breast cancer or inherited changes in your BRCA1 and BRCA2 genes, you may have a higher breast cancer risk.” 

In short, I might actually have been a bit of a cancer ticking time bomb and I’m lucky to have had breast cancer which is much easier to find, much easier to treat, and a much better survival rate than ovarian cancer.

Now that I’ve had cancer, there is also the question of recurrence both locally and in the opposite breast and the risk of getting other cancers.  To help me understand my personal risk my doctor plugged my information into a mathematical model from the Dana Farber Cancer Institute.  This model takes my age and the fact that I’ve already had cancer to assess my risk for contralateral breast cancer (the other breast), ovarian, and pancreatic cancer.  

The numbers aren’t pretty.

• Contralateral breast cancer: 37% before age 72 (vs. 13% for a non genetic mutation carrier)
• Ovarian cancer: 45% before age 72 (vs. <1% for a non genetic mutation carrier)
• Pancreatic cancer: 2% before age 72 (vs <1% for a non genetic mutation carrier)

So what do you do with these numbers that imply I could be a further ticking time bomb.  Well, that leads to the 2^nd topic…

Surgery
The genetic information doesn’t really change the landscape for the systemic treatment I’ve been getting, the chemotherapy and immunotherapy.  It changes the surgical landscape quite a lot.

It’s likely that my surgical choice without the genetic mutation could have been a lumpectomy since my tumor has shrunk quite a lot.  However, that’s not the route I’ll be taking due to my genetics. 

 
My goal is to live as long as I can and not do cancer treatment ever again if I can possibly avoid it.  This means that instead of a lumpectomy or a single mastectomy I have chosen to do a bi-lateral mastectomy to remove both breasts and eliminate as much breast tissue from my body as we can.  Much less tissue = very low probability of occurrence.  It’s worth noting that no breast surgery fully eliminates breast tissue from the body, it’s too interleaved with other tissue in the area.

I will also be having my ovaries removed for the same reason.  The recommendation for women who have the BRCA1 gene is removal before age 40 or after child bearing is complete so I’m a little behind here, but now we know and this is something I’ll likely do early in the new year.

The reason the ovary removal is so important is because ovarian cancer is very hard to detect.  There are no tests that truly enable finding it early; by the time it’s found it is often late stage and a challenge to treat.  Now that we know I have a high risk for it, I do have ultrasounds every 3 months, but that’s not a guarantee it would be caught, hence the need for the ovary removal in the relative near-term.

The downside to the ovary removal is that I’ll no longer have the protection of estrogen against heart disease and my menopausal bone loss will happen early.  (You lose most of the bone you will in life in the first 5 years post menopause.) Both of these things are manageable, and I still prefer them to more cancer.

I’m sure some of you are wondering…but what about the uterus?  The current recommendation doesn’t call for uterine removal because uterine cancer is very easily detectable.  We’re still talking about that with the doctors to make a final call here.

These surgical decisions may sound a bit extreme, but I’ve decided it’s right for me and Mike is very supportive of the decisions…I think this gives me the best chance of being cancer free from these types of cancers for the rest of my life and my doctors concur.

Next Steps

I’ll be wrapping up my chemotherapy/immunotherapy treatment toward the end of October and then I’ll move to the surgical/radiation phases.  

First I’ll have the bilateral mastectomy and they’ll insert tissue expanders so that I have skin pockets available for reconstruction.  I don’t have a date for surgery yet but we’re aiming for as early in December as possible.

After a few weeks of healing, the plastic surgeon will start the expansion of the skin via the tissue expanders.  That will take a month or two.  Once everything is expanded to where he wants things I’ll likely start radiation treatment.  It’s not official that I’ll have radiation but my surgeon suspects I’ll need it; I’ll meet with the radiation oncologist post-surgery.  It’s important to do all the expansion before radiation because one can’t expand radiated skin.  The plastic surgeon will also over expand the radiated side because the skin on that side will tighten and shrink from the radiation.  Even though my response to chemo has been excellent I have to do radiation because of my original tumor size – I’m right at the border here because radiation is standard for tumors > 5 cm and mine was about 5.3 cm.

After radiation is done I have to wait 9 months for the skin healing to take place so that I can do the reconstruction surgery.  

There are two main types of breast reconstruction, implant based or “flap” based which uses your own tissue from your belly, thigh, or back.  

I have chosen implant based because the flap option which would be the best for me required usage of some vasculature which is also sometimes used for heart bypass surgery.  Given a family history of heart disease I don’t want to eliminate that option for myself later in life if it’s needed.  The implant based surgery is also a much simpler procedure with a faster recovery.  However, the downside is that the mesh material supporting the implants will require maintenance and need to be replaced in 10-15 years, so I’m pretty much guaranteed at least 1 other surgery associated with all of this beyond these initial ones.  I’m told it’s a fairly simple procedure so that doesn’t sound too bad.

Those Side Effects…

I wanted to mention a couple of chemo side effects I haven’t before because I think it’s important to talk about them more.

Chemo brain is a side effect that is very real.  My brain is slower, I process more slowly, and I sometimes have trouble finding the right word or I use the wrong word.  More often than I used to, I find myself in a room in the house and I don’t know why I came or what I was doing.  I get distracted more easily.  I’m hopeful this will ebb a bit when I’m done with treatment and I’m not sure if others notice any difference but I sure can tell.  This is a hard one and it’s scary…but there’s nothing to be done about it except keep exercising.  (Exercise is the best treatment/prevention which is I why I’ve been trying to walk so much.) I wanted to be honest about the fact that this is a thing because it is and it was the side effect people least wanted to discuss when I was asking.

Note: if you don’t want to read about menopause…skip this section. ?

Now I want to mention a side effect of all this that I feel is a bit taboo and it shouldn’t be.  Afterall, if 50% of the world’s population is women, 50% of the population goes through this – it shouldn’t be taboo.

Being in my early 40s I had started to think about menopause as something that was coming but was a bit distant.  However, one of the common side effects of chemo is that it can put you in what’s called “chemical menopause” fairly quickly.  This happened to me and it’s interesting because even my medical providers talk vaguely about “hormones” and what not, but what it is, is menopause.  I feel lucky, it hasn’t been too terrible for me, but I have been having hot flashes (although not as bad as some women I know), and insomnia.  Those have been the main things.  The insomnia is the worst bit.  (Although it’s hard to know what’s the menopause vs. the chemo on the insomnia.) 

I have been consulting with my Naturopathic Doctor (ND) on things to help and she’s given me a few things which seem to be working and I’m grateful.  (All with the approval of my Oncologist of course.) I’m glad it hasn’t been too terrible for me and my ND assures me that menopause is a time of transition, our bodies adjust to the new state without hormones – it just takes time.  I wanted to mention it here because it’s a thing and I think it shouldn’t be a topic that’s avoided.  

Once I complete my surgery to remove my ovaries I’ll officially be in “surgical menopause” so this isn’t going away and is not temporary.  (For some women the chemical menopause is temporary.) 

Phew, that was a long post!   Thank you so much for reading along with this one.  We are so grateful to all of you for you continued and amazing support – we couldn’t do this without you!

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