Why me? Where to? What now?

alt22 · September 2016

When I first got my invasive ductal carcinoma of the right breast diagnosis three weeks ago, I visited this forum but did not register at once because I was so lost with all the terminology.

Now I know what the HI-67 in the pathology report means. And I am so scared.

ONCOLOGIST SENT MY TISSUE FOR GENOMIC EVALUATION. The excessively high estrogen and progesterone levels seem to point in the direction that I may be able to escape chemo.

I am 49 and have a 17-yr old son. I have no immediate family. Lost my mom to non-hodkins lymphoma at age 67.

I have microcalcification clusters. No big tumor. I don't smoke, rarely have a drink, eat tons of fruit and veggies, exercise regularly, have a health weight, don't eat meat, yada, yada, yada.

So like all of u I assume, I already passed the "why me" stage because I know that everything happens for a good reason. There are lessons to be learned.

Now I am just so SCARED.

That is why I write.

By next week I should have completed all radiologic studies and get the results on the VRACA test and the genomic test, the doctors shall recommend the surgery alternatives.

NOW I ASK: how long does it take for surgery and treatment to be over and begin a 'normal' life?

The following questions ARE about physical aspects- but please don't berate me for being superficial. I just need to know the real possibilities.

Will I be able to physically lead a normal life? Aside from desk work, will I be able to go to the gym and do my yard?

If I get chemo- is it inevitable that my heart will become weak so that I will no longer be able to exercise vigorously as I do now? Is it inevitable to loose my mane? Will the hair grow back white (it is still dark brown and very straight)

What will be the PERMANENT effects (other than surgery) in my body?

If I survive, and get both breasts removed, (And get no other cancer) what is a realistic life expectancy?

Sorry to burden y'all with such a huge post and so many questions but I am at a loss. The oncologist thoroughly explained things but I think that he does not want to alarm me before all the info is in.

For me, the uncertainty of the alternatives burdens my every waking hour. That is why I need to know what each route may entail and prepare myself accordingly.

Thank you for any insight you can share.

Be well.

Moderators · September 2016

Hi Alt22-

We understand your fears and concerns, and they are completely normal. There is so much uncertainty after a bc diagnosis. We also understand wanting answers, but keep in mind, everyone has different experiences with their surgeries/treatments/etc. So it's hard to say what some of your outcomes will be. But we'd like to direct you to a couple of forums where you might find more info, and be able to connect with other members who can share their insight and experiences.

First, our Surgery forum, where you can read about other member's experiences with their surgeries. Also, our Chemo forum, where you can read about the after-effects of chemo, and get some info on how to minimize hair loss.

We hope this helps! Just know that you are not alone!

The Mods

Jennie93 · September 2016

First of all, that is not being superficial. These are very real and valid concerns.

If you have a very active lifestyle, you probably will find that there will be some limitations. A few women do get back to, or even surpass, their previous level of fitness, but it is not the norm. It's an unfortunate fact that when you have any lymph nodes removed (even just one) it puts you at risk for lymphedema, which is no fun at all, and you will get a rather long list of things you are never supposed to do again.

Everyone is different, but in my case, the tumor was laying right on the chest muscle, so they had to remove it to get clean margins. I never imagined there are things you can't do when you are missing your pec muscle.... But there are. I also developed something called "cording" which is quite painful and somewhat limiting. You probably won't have those issues, but it's good to know ahead of time, so it's not such a shock, at least I think so.

If you have to get chemo, yes, there is a small chance of things like heart damage, neuropathy, other cancers down the road, or permanent hair loss. But those things are very rare. Most say that while it was not fun and they wouldn't want to do it again, it wasn't as bad as they expected. I was 49 at the time I did it, and I had very little nausea, only a little numbness in the tips of my fingers that went away over time, was able to work all the way through it, and my hair did grow back the same color as it was.

I also had heavy-duty radiation on the left side, with no heart or lung damage, no permanent side effects.

I have to be honest, though. There is no going "back to normal". Even if you heal fantastically well, this changes you forever in some ways. That has been hard for me to accept, because I don't like the "new normal" very much, but I have to learn to look forward, not back.... Easier said than done.

etnasgrl · September 2016

Will I be able to physically lead a normal life? Aside from desk work, will I be able to go to the gym and do my yard? Depending on what all you have done, absolutely! I had a lumpectomy, followed by radiation and work out several times a week. Everything that I did prior to breast cancer, I still do today.

If I get chemo- is it inevitable that my heart will become weak so that I will no longer be able to exercise vigorously as I do now? Is it inevitable to loose my mane? Will the hair grow back white (it is still dark brown and very straight) I can't answer this one for you, as I never had chemo. I'm sure some of the ladies here that did chemo will be able to help.

What will be the PERMANENT effects (other than surgery) in my body? I have not noticed any permanent effects.

If I survive, and get both breasts removed, (And get no other cancer) what is a realistic life expectancy? I would say your life expectancy would be just like anyone else's.

Right now is the hardest time. Waiting, meeting with doctors, learning more about your cancer, and creating a treatment plan. Once all of that is done, things will be better. You will feel more in control. You will never be the same woman that you were prior to being diagnosed, but you can still experience "normal" days and a "normal" life. ((((Hugs))))

Luckynumber47 · September 2016

Dear alt22, I SO empathize with all the thoughts and worries you are having. I felt exactly the same way! It was like someone had taken my life and put it in a blender. Who knew what I'd be left with after. I was so afraid of not being the physically active person I had always been. But let me tell you, my worries were for naught. I'm still physically able to do everything I did before. Right now, 5 months post surgery, I'm in the middle of repainting the outside of house and tearing out walls inside to remodel the kitchen.

I spent the summer shoveling our yard and dragging hoses, trying to dig up blackberries and relandscape. My goal is to live long enough to eliminate the blackberries (so I figure I've got a good 20 years left )

Yes, my life is forever changed but I refuse to let this cancer thing slow me down or take away things I love.

I still think about cancer all the time, it's like a song always playing in the background, but I'm not scared anymore. I've worked through that and understand the odds are really stacked in my favor and I'm ready to focus my attention elsewhere.

I was extremely lucky with my treatments. I had a BMX so got to skip radiation. Yes, it's major surgery but I recovered well and am very happy with my decision. Only lost 1 lymph node on each side and I have full range of motion. After my "Goldilocks" reconstruction I have little booblets, but my husband is fine with how I look, and really, nobody else notices. My Oncotype (and all my pathology) said I could skip chemo so my only continuing treatment is letrozole (and a handful of supplements)

alt22, what I would say to you is don't be afraid, be determined! You may have more issues with treatment than I had or you might sail right through them, but either way you will be able to rebuild what you love. Your life, as you know it, is not over, it's just taken a short little detour.

KSteve · September 2016

alt22 - Welcome, and let me first say, that I'm very sorry you find yourself here. As others have said, this is the hardest part of the journey. Once you have a plan of action, you get in "fight mode". I am 6 years out from diagnosis (this weekend, in fact), so I've been doing a lot of reflection lately. I can honestly tell you that I'm in better physical shape now then I was when diagnosed. I went to the gym, but never worked out too hard. I was probably about 25 pounds overweight and wasn't too concerned about the amount of fast food we were eating in between my son's baseball and football games. By the way, my son was 16 and daughter was 19 when I was diagnosed, and I was 44. While doing treatment, life did change somewhat for me. I grew tired easier, sometimes didn't want to eat, etc, but I continued to work full time throughout all of my treatment (desk job). I did lose my hair, and it did initially come back pretty grey (which I colored as soon as there was probably an inch of hair growth Fast forward to now, and I love my "new normal". I work out much more now and am in the best shape of my life. I eat so much better, much fresher food, and rarely do fast food. Not because I had cancer, but because I didn't ever really like the taste of fast food, and now I make it a priority to cook healthier. I look forward to trips that we take, and love making memories with my family. My hair is back to my normal color and length, and has been for several years. I really don't have any long-term debilitating side effects You will forever be changed for having lived through breast cancer. I do realize that some people do have complications, and I'm certainly not minimizing their issues at all. I just wanted you to know that there is light at the end of the tunnel and you will get through it. One day at a time. The fear will calm down with time. In the meantime, don't hesitate to ask any questions along the way.

Hugs,

Kathy

Kiks1 · September 2016

alt, I was dx last December, am 49 with a 17 year old daughter. Those were my exact same thoughts. Surgery and chemo lasted for 5 months ( with about a month in between each treatment, great breathing room). I started hormonals after chemo and hope to be on that for 10 or more years if it means keeping this darn thing at bay.

Is life normal? Yes, very much so and, in fact, I have learnt a much greater appreciation for it. I started work full time 6 weeks after chemo. I have even put in some long weeks without any trouble. I used to run 45-50 miles a week before bc and have slowed down a little, not because of bc ( altho I suspect I use it as an excuse at times!) but I gave myself a break through treatment. Now, it is just training to get back on pace. Chemo was not bad for me at all. I didn't have nausea ( nor did I take meds for it). My blood counts were great. A few aches, nothing worse than a hard workout. I did lose some hair but not all. It is back fuller than before.I never really felt much fatigue and had actually moved house twice. I, also, made college visits with my daughter during chemo.

What is realistic lifespan? I don't know and all I have is faith and hope. I am fearful and there are days that I do better than others. But I am grateful for each day and the small things that I have never appreciated before bc. Chemo actually put me in chemopause and eliminated my debilitating weekly migraines and my skin has never looked better. I don't get mad at the trivial things anymore and I truly feel so much happier.

I hope you will find peace as you move along this journey. We are resourceful women/men and we will find a way to thrive despite our circumstance. Here's wishing you all the best.

ChiSandy · September 2016

Was I scared? Hell, yeah. Nobody on either side of my family ever had bc, I was told all my life I was healthy as a horse (except for my allergies, osteoarthritis & weight), and at the time I was diagnosed I was in the best shape in decades (even had two new bionic knees to carry me further than I ever used to walk). Diagnosis, via a phone call from my gyne's office the day after biopsy, hit me like a ton of bricks; so I immediately hung up, downloaded Elisa Port's & Susan Love's bc “Bibles" and started investigating reputable sites (here, Komen, ACS) and staying off the rest of Google. Set up my surgery appt the next day and went into “plan and fight mode." I didn't have mastectomy or chemo, but I did have radiation and am taking hormone-suppressing meds for the next 5-10 yrs.

Is there stuff I can no longer do? Well, due to the risk of lymphedema (I had 4 nodes out, all negative, and did develop mild cording & stage 0 LE), I can no longer get blood draws, IVs, vaccinations and BP cuffs in or on my surgical arm. I did gain a bit of weight--not from letrozole but from stupid comfort-eating. I used to have a glass or two of good wine with dinner and enjoy fine dining several times a week--and my low-carb diet was heavy on the beef, cheese & charcuterie. No more--gotta be more careful, eat leaner "dead animals" and more “leaves." And my wine is limited to a pint or less per week. I had to drop out of the Bar Assn. show last fall because I expected to be too fatigued (turns out I wasn't but I didn't want to take the chance of hurting the production). I used to gig every weekend, criss-crossing the Midwest or even venturing into other regions to record, perform and attend music conferences. I now appreciate things closer to home--and my family. I perform now only when the joy of performing outweighs sweating the logistics (parking, schlepping equipment, fretting over adequate draw or merch sales). I get much more sleep--my 8 hrs/night are a priority.

BUT I didn't give up going to concerts. I still perform closer to home--and I make others load, unload & schlep. Still take my weekly voice lessons. Rejoined the Bar Show cast. I didn't give up restaurants--I am just pickier about the menu and unafraid to make my needs known to the staff; and I still cook adventurously, just without the sugar & starch whenever possible. And I cook from scratch most nights too. More fish & poultry now than mammal meat. Wine? Instead of 5 or 6 oz 3x/week, 2 or 3 oz. every other day, sometimes oftener (and if it isn't a wine I love, I'm sticking to seltzer). I'm walking a lot more than before (though still not enough). And I still travel--but with my husband. And much further afield, and for fun, not career. Since my diagnosis a year ago: we took a Mediterranean cruise; I traveled to London, Lausanne & Paris for an educational trip (nominally educational but personally fulfilling); we went to San Antonio for an extended weekend; and we just got back from 10 days in Italy (Rome & Tuscany). Vegas this Dec. too.

So are there things you will have to give up? Yes. Things you will have to modify? Yes. Things you can do as well as or better than before? Yes. But don't get ahead of yourself. Time to put one foot ahead of the other at a time and take the days as they come. Most importantly, not only shouldn't you panic about the future, but you shouldn't second-guess the past either.

Anonymous · September 2016

My 2 c.: don't get too attached to outcomes or expectations. If you have chemo it doesn't mean you'll have all the side effects listed everywhere. If you have a BMX it doesn't mean it's not going to go well. If you have rads it doesn't mean you're going to wind up with awful burns. It's hard to tell yourself a different story in your head in the early days after dx, but after a while, you will, and all of this gets easier to bear and live through. And you will.

Hugs

Claire

Why me? Where to? What now?

Comments

Categories