Top 75 things you can do to TAKE CONTROL during your bc txt

sage · February 2014

So you have breast cancer?
Sucks to be you (and me). Welcome
to the club. I’m sure it is one you
really didn’t want to join. Guess
what? Me neither. Yet here we are discussing sentinel lymph
nodes and nipple tattoos. One of the
things I hate most about going through breast cancer is the complete lack of
control. Research shows that people who
feel helpless instead of in control tend to suffer from greater stress which
can have a direct negative effect on your overall health and potentially
shorten your life span. I am a control
freak…. I am O.K. with that and can embrace that part of my personality. So I am going to help you take control during
this yucky mess at a time when you feel at a complete loss of control. There are many things you can do to help you
get through the treatments, alleviate side effects and help prevent your cancer
from coming back or spreading further.

That being said, I am not getting paid for endorsing any
product, there are no kick-backs and I cannot be held responsible for any side
effects of these recommended products or actions. You may want to discuss them with your Doctor
and research them online. No Doctor (or
few) will tell you about all of these products or actions and I had to find out
the hard way… by trial and error. But
what I did find when talking to other bc patients while waiting for treatments
was that they just wanted to be able to take some control back in their lives
(and could I please write down a list of these products for them). I even had health care professionals ask for
this information.

So are you ready?
Then by all means let’s go.

You Have Been
Diagnosed… Now What?

YOU are your best health advocate: become informed, read, study, follow the
research, ask questions, keep a binder with all your information. I was surprised when I met women who had no
idea what kind of breast cancer they had.
Learn as much as you can about your type of cancer so that you can make
the best decisions for your care.
HOWEVER, be careful where you look online because there are some crazy
websites out there. I have found
breastcancer.org is the best hands down.
Get a second opinion and maybe a third. Boy I can tell you a long story about that
but I will sum it up by saying I was under one course of action, got a second
opinion and that took me down a completely different path. I changed my Doctors, hospital, treatment
regime… EVERYTHING.
Be wary of any Doctor that rushes you or doesn’t
adequately answer your questions. The
best approach is a team approach like the Tumor Board at my hospital where
there are many surgeons and oncologists on the board that review the file for
EVERY patient.
Be prepared for some of your friends to
disappear off the face of the earth. And
be prepared for the truly good ones to really step up their support. If a friend or family member goes into a
montage about an acquaintance that had bc and had “x” complications or died,
tell them that you don’t want to discuss your condition with them and decide at
that point to not let them be a part of your journey. It’s that simple. And believe me, you will be surprised how
stupid some people can be.
Have a conversation with your husband or partner
about who you are going to tell and how much information you are going to share
because, especially if you choose to use a wig, they will not know.
Have your husband or partner be the person to
call and talk to your family about your cancer as you go through the complete
diagnosis. He (or she) is the gatekeeper
of info.
Telling the kids pretty much sucked but I was
upfront and honest and my kids were old enough (9 and 11) to understand what it
meant. Let them know that they can ask
questions anytime about anything during the process or journey. Take time to also talk to them individually
as they will have specific questions that they don’t want to ask in front of
their sibling(s). I kept my head covered
(wig in public, comfy hats at home) mostly because it freaked them out to see
me bald.
Don’t feel like you HAVE to participate in
clinical trials if they don’t feel right for you. I turned down 2 but I also am in 3. Go online to see what clinical trials are
available to you for your specific diagnosis.
Who do you tell?
Close family, co-workers, your church, the kid’s teachers, close friends
and THAT’S IT! Nobody else has to know
if you choose.
Keep sticky notes on your bathroom mirror: I had one for surgery, chemo treatment and
radiation treatment and I would put a hash mark to see how far I had come. Just remember that every step is a step towards
the cure.
Stay positive and believe in your body’s ability
to heal and have confidence in the healing power of your medicine.
Cry by yourself…. scream at the top of your
lungs when no one is around. It did
freak the pets out but I spared my husband and the kids. When the negative, fearful feelings start
encroaching recognize those as the devil trying to permeate your life, at your
lowest and send you off track from healing and enjoying life.
Do not be afraid to start any anti-anxiety (such
as Lorazepam) and/or anti-depressant (such as Effexor) as the adrenaline is
coursing through your body after your diagnosis and you need to get adequate
sleep.
Thank your Doctors and Nurses.
Put it in God’s hands.
Try to help others going through it. A hug goes a long way. I read this somewhere and it holds true: You can’t stop the birds of sorrow from
entering your life but you can prevent them from nesting in your hair.
Exercise daily even if it’s just a walk around
the block. Use the fresh air to clear
your head.
Be strong for your kids-show them that you can
fight with grace.
You can cry with your husband or partner on a
few occasions but you need to be strong for him too because he will be carrying
the weight of the world.
You have to let yourself have bad days. Not every day can be lived like it’s your
last. Sometimes you have to do laundry,
grocery shop and pick up dog poop. Just
remember that normal days can be good days too.
Just let your family know that you might have a grumpy day every now and
then and that they may too and that’s O.K.
It is O.K. to hate the color pink and dread the
month of October (especially at the grocery) since it is breast cancer
awareness month. You’ll see…

Surgery:

When you
go in for surgery, whatever type you are having, you will need a wireless
mastectomy bra. These are sold at the
hospital or you can also buy a similar one for much less at Meijer. Basically it is a sports bra that hooks 6
times in the front. The mastectomy one
is only different in that it has little internal envelopes over each breast to
but pads or silicone breast inserts.
Wear a button down shirt. I bought several nice cotton loose shirts at
Kohl’s as I had a surgery drain. You
will have a drain if you are having your lymph nodes removed, breast removed or
if your lumpectomy will result in the removal of significant tissue. Believe me you do not want to be fussing
around with a shirt you have to slip over your head.
After surgery, there are silicone scar
treatments you can purchase online. My breast
surgeon was not aware of these products but plastic surgeons know all about
them. They can vastly reduce the texture
and severity of any scar and are used for breast implant surgery recovery. I purchased mine through Biodermis.
You can also use ultrasound and massage on the
scar tissue to break up its fibroid texture and practically make it disappear. I purchased the Mendix 1MHz pulse-wave
ultrasound device and used it for several months once the incision healed.
Get a compression sleeve from your
hospital. They will properly fit it for
your arm. Then you can purchase much less
expensive (and actually pretty) ones online.
My insurance only covered one sleeve.
Wear them all the time after surgery, especially when exercising, to
reduce the chance of lymphedema.
Measure both your arms at several locations BEFORE
surgery so that you can track any significant swelling and get a better handle
on possible lymphedema.
START STRETCHING IMMEDIATELY once your drain is
removed. You may want to also start
Physical Therapy. If you have cording,
you CAN stretch it out and reduce it significantly.
Start lifting weights once you are cleared to do
so. Start around 4 lbs. Exercise greatly reduces your chance of
lymphedema. I bought a set of
inexpensive weights from the dollar store and kept them next to the couch so
that when I was watching TV, I could also be stretching.
Attend a lymphedema workshop from your local
hospital to learn how to avoid/reduce lymphedema and when to wear compression
sleeves (ex. when flying in an airplane).
If you have had children and have a stretched
stomach DO NOT HAVE A TUMMYTUCK. If you
end up having a mastectomy (single or double) they can use this tissue in a
beautiful way to completely build you a new breast(s).
If you are having breast reconstruction, you
will have to wait for several months to over a year past all your treatments
before the skin is ready for the surgery.
Consequently, I had to go through a summer with one breast much smaller
than the other (and I love the beach).
You can purchase a product called Swim Shapers from Braza which are waterproof seamless foam/nylon cups with molded bump pads
for enhancement that fit in your bathing suit. You couldn’t even tell!
Chemotherapy:

To port
or not to port: that is COMPLETELY up to
you. I had a lot of chemo and I have
very small veins and my Oncologist didn’t feel like I needed one. So I didn’t.
It wasn’t always easy to get the needle in but there are things you can
do to help with that:

You must
stay hydrated all the time especially before a round of chemo. I drank copious amounts of water and especially
G2 for the electrolytes, 0 calories and I could stomach it. I would drink 24-32 ounces an hour or two
before a chemo round.
As you are waiting to receive chemo (oh and by
the way you are put in room with about 20-30 other people receiving treatment
so don’t think you are going in a private room) keep your arm down and pump
your fist with a stress ball to get those veins nice and plump.
Once you are back in the treatment area, put a
warm towel around your arm and this will help with blood flow.

Have them
add Lorazepam to the chemo mixture. This
will greatly relax you during treatment.
To wig or not to wig: that is completely up to you. At first I did not but I will tell you what,
the wigs they have today are amazing and people could not even tell I was
wearing one. Many people didn’t even know
I was going through treatment. This was
especially important for my children because I could still be in social
situations (even go on vacation) with my kids and no one had any idea but
them. Many hospitals have programs to
provide beautiful donated wigs for very little money.
Celebrate when you complete treatment. I went and saw a beloved comedian with my
husband and 2 kids following the end of all my chemo treatments.
I had constant diarrhea during chemo partially
due to my Gilbert’s Syndrome. The great
part of that particular side effect is that I lost a ton of weight. But you have to be careful because if you lose
too much, your oncologist will get on you because they have to change your
amount of chemo to match your body weight so try to keep your weight
normalized. That being said, although I
NEVER vomited once, I did still feel queasy most of the time and nothing really
sounded good. So here’s the good part,
if you are losing weight during chemo, you can go to the grocery and eat pretty
much whatever you want. Have at it! Get that Big Mac and have a shake too. That’s pretty awesome, I don’t care what you
say.
Find whatever sounds good to you and have plenty
of it on hand. I could stomach rice and
fruit so I ate tons of that.
Keep all the medication summaries when you have prescriptions
filled in case you have any side effects.
I could not take Compazine as it made my vision super blurry. They can always switch you to something else.
Be prepared for myopathy which can occur from
surgery or Taxol. Take Alpha Lipoic Acid
and vitamin B6 to help reduce or eliminate the myopathy.
You may have something called chemo induced
menopause. I was diagnosed with bc at 41
and once I started chemo I never had my period ever again (and this is a bad
thing?!).
Be prepared to not lose all your hair and have a
smooth head. I had to shave my head
throughout treatment because there were sparse hairs all over.
You will lose your hair at 2-4 weeks after you
begin chemo so before you start the chemo treatment regime, get a cute short
hairstyle so that when it comes time to lose it, it will be easier to deal with
(also note, I knew my driver’s license was about to expire so I had my picture
taken just before my hair fell out so I wouldn’t have to deal with that).
I did not have a pretty bald head like some
women do. I was sorely
disappointed. Part of the problem was
that my scalp was super white having never been exposed to the sun while the
rest of my face was tan. You could take
the self-tanner cream and apply it to your scalp and that may make it look more
evenly toned and prettier.
When done with chemo, the hair that first comes
in may be “teaser” hair that has no good root system and may quickly fall
out. Don’t worry though, it’s coming.
The new hair that finally starts to come in will
be white, super soft and fine, almost feather-like which may freak you out but
it does start to thicken up shortly.
Be prepared for pimples on your scalp once your
new hair really starts growing in. Start
a Nioxin shampoo and conditioner (I found them at Ulta) as these will open up
the follicles and help with thickening the hair. You can also use Rogaine if your hair
regrowth is too slow or thin (they sell it for women or you can get a cheaper off-brand
pharmacy label).
Remember that you will lose ALL the hair on your
body: arms, legs, pubic hair. You may have ingrown hairs, particularly on
your legs as the fine hair starts to grow in.
Use an exfoliating sponge to help open up the follicles.
Your eyebrows and eyelashes will fall out but
don’t worry too much about this as you can draw the brows in with brown
eyeliner. Also you can use a charcoal
smoky look on your upper lid and you will barely be able to tell.
After you are done with your chemo treatments,
buy Latisse for 1 month and use it on both your eyelashes and eyebrows to jump
start the re-growth.
Take Biotin for hair growth.
If you are not doing a wig, have several hats
and scarves ready to help you feel normal.
You can color your hair as soon as it starts
coming in. I have pre-mature grey hair
and didn’t have any problems coloring it as it grew in. In fact, I decided to try a new lighter shade
of blond and it looked so cute.
When all your hair starts to begin growing back
in, you will get peach-fuzz growing in on your face and some of the hairs may
be long (~3/4 inch). These will grow
down from your side burns toward your jaw line.
Don’t pluck them but you can bleach them if they have any color. Don’t worry, these will ALL eventually fall
out and be gone forever.
Radiation:

ALWAYS
make sure that they ask the same questions and take the same pre-measurements
prior to your treatment. They can make
mistakes so be on top of it.
Use aloe after treatments. I liked it better than Alra Therapy Lotion
and Aquaphor as you can glob it on and it felt refreshing. I found an organic 99% aloe at a local
natural food store and a 100% aloe (Made in the USA) at Walmart. Just make sure they have NO ALCOHOL.
My skin held up nicely until the boost towards
the end which included my nipple. My
nipple cracked after the last treatment.
I combated the cracked skin by gooping on tons of Aquaphor and my
radiation oncologist gave me an antibiotic cream to prevent infection.
This is very important-your burn on the boost
will get worse the week and a half following the end of treatment. It may be scary as you see your burn go from 1st
to 2nd degree but there are things you can do to help and it heals super-fast:

Treat it
like a burn-keep it moist, covered and clean.
The first week it may start itching horrible so
have Benedryl ointment on hand and that will make all the difference in the
world.
Take your pain killers (like Vicodin) and
alternate with 2 liquid alleve capsules for the inflammation.
When you shower, let the water run over the burn
and remove as much as the dead tissue as possible but don’t rub it off
aggressively. Don’t be upset when you
see the skin peeling away or the raw oozing skin as it all goes away super
quick.
Use a product for burns called 2^nd
Skin. It’s amazing stuff. This is the sequence I used: antibiotic cream, Aquaphor, aloe, 2^nd
Skin, non-adhesive gauze, wireless bra (Target sells a good selection of cheap
wireless bras).

I wore a
wireless bra for 2 weeks 24 hours a day after my treatment ended.
You can also get Lidocaine to numb the nipple if
it cracks.
After about 3 months, once everything was
healed, I used a self-tanner on my body to even out the color because the
radiation left tan marks on my skin.
After my eyelashes and eyebrows grew back in
after chemo and radiation, I went through several more waves where they would
fall out again. 90% of the lashes and
50-75% of the brow hairs fell out at 4-5 month intervals 4-5 times. I think it may be that you have a fairly
regular loss of these hairs but they were all coming in at the same time. Once they started to stagger in growth, you
couldn’t tell. You may want to trim your
eyelashes as they go through this so they don’t look silly with just a few
growing in. You can use Latisse to
stimulate the growth.
Hormone Therapy and Supplements:

Tamoxifen
is great stuff but it does have some side effects. One of those is weight gain. I gained 20 lbs. within a year of starting it
which seemed to make hot flashes much worse so you REALLY have to watch your
calorie intake and exercise level. But
on the same token, please accept and love your new body no matter where your
weight is.
The second side effect I had with Tamoxifen is
uterine polyps. I am in chemo induced
menopause which is not a bad thing. No
more periods. I had abnormal bleeding (a
lot of bleeding) and it turns out I had a uterine polyp (lucky me). They can check for it quickly and easily at
your Ob/Gyn, and can send it off to pathology to determine if it’s benign. If you do get a uterine polyp, they will
perform a hysteroscopy and D&C (at the hospital but usually
outpatient). It was pretty easy.
There has been some recent research that shows
that one baby aspirin a day can reduce your chance of cancer.
I had triple negative breast cancer, so I take a
vitamin D supplement which has been found to reduce the chance of reoccurrence.
As stated before, I have Gilbert’s Syndrome and
I had high levels of ALT and AST during a recent blood count. I started taking milk thistle to help with my
liver function and within 2 weeks my levels dropped to normal. This is important because Tamoxifen can affect
your liver and cause a rise in these blood levels and I did not want to be
taken off it. I think it would also be a
good measure to take the milk thistle following chemo treatment to help your liver
flush out all the toxins.
One
final bit of advice, if you are not happy with your breasts after all the
surgery and treatment, see a breast reconstruction plastic surgeon. They are masterful craftsman that can do
amazing things. I ended up losing much
of my one breast to three lumpectomies plus radiation. I had fat taken from my hips and injected
under the scar tissue plus I had my non-effected breast lifted to match the
profile of my bc breast (all done with one surgery). There are minor scars but you really cannot
tell what I have been through. They look
perky and amazing. Do this for
yourself. And my final piece of advice
would be now that you know fear, there will be no fear in your life moving
forward: Know fear? No fear!
Take that trip, hug those kids, tell your husband how much you love him,
try that hobby you have always wanted to try, experience more, bitch and worry
less. And by all means, please add to
the list if you find more products or ideas helpful. And may God bless you.

Gardengirl66 · February 2014

sage, that was beautifully written, thank you for all that advice.

sage · February 2014

Gardengirl66,

Thank you. I actually did not want to post it but felt it might help just one person and was worth it. I apologize everyone for the numbers being out of sequence. Happened when I uploaded it from MS Word.

Good luck to you all!

elimar · February 2014

You have created quite a comprehensive compendium of tips and I think reading thru' it will be time well spent for someone just getting started on "the journey."

RE: "You can also use ultrasound and massage on the
scar tissue to break up its fibroid texture and practically make it disappear. I purchased the Mendix 1MHz pulse-wave
ultrasound device and used it for several months once the incision healed."

Most of the tips rang fairly true to my experience (that did not include lymphedema,) but when I tried to get ultrasound therapy to break up scar tissue I was told by the PT that therapeutic US was contraindicated for patients "with cancer." I said I was not supposed to "have cancer" any longer, but she told me that they still would not use it on a former cancer site just in case some tumor cells remained. Supposedly, the heat from therapeutic US could excite the cells and encourage angiogenesis and metastasis. I still don't know if this is scientifically proven, but I never did get the US therapy, only massage, to help with my scar tissue at my tumor site.

sahars · February 2014

Thank you sage!

BabyRuth · February 2014

Great list Sage! I am sure that it will be a great help to many.

BigDBeatingBigC · February 2014

Great post, thank you!

exbrnxgrl · February 2014

Thank you for taking the time to compile this list. One thing I would add (and maybe you did ) is that everything you mentioned might not be true for all. For instance, at my infusion center, everyone is in curtained off cubicles, so there was a certain amount of privacy and the nurses try very hard to maintain it. Not all infusion centers are the same. I also had immediate one step reconstruction, before all other tx, so never was flat or uneven. Ports are also good for blood draws and imaging injections. Anyway, great list!

Cozzoli · February 2014

Thank you Sage!!

sage · February 2014

Thanks for the kind words everyone. I have a few other products I forgot to mention and that should be added to the list:

1. For hot flashes, try a product from Earth Therapeutics called Pedi-Jams. These are sole softening gel booties that you wear to bed at night and, for me, they totally cool me down and keep the night sweats away (I found them at Target).

2. Since I am in chemo induced menopause, I tend to get vaginal dryness plus I noticed I am more susceptible to vaginal yeast infections (cannot stand these!). I try to eat yogurt every morning and that helps. I also started taking a probiotic specifically designed to prevent vaginal yeast infections. One is called RepHresh Pro-B and was purchased at CVS in the vaginal yeast infection treatment section. It's kind of pricey (like $1/day) so I found AZO Yeast Homeopathic Medicine at Walgreens ($10 for 60 tablets). You may also want to keep a product called Replens Long-Lasting Vaginal Moisturizer on hand to supplement the body's natural lubrication (seems to also help prevent with the yeast infections, especially after sex or hot baths).

3. I really miss a beer or glass of wine after a tough day to unwind. I think it is O.K. on occasion but I have found a much better product to help you unwind. I use a product called VitaMelts Relax L-theanine by NatureMade (I think I found it at Walgreens or CVS). It is the same component found in green tea and the tablets are smooth dissolving discs. L-theanine is clinically shown to help relax the mind. I also love herbal tea which I drink all the time for relaxation. There are so many wonderful flavors of tea and it is arguably better for you than plain water. So drink up!

It is true that these products worked for me (specifically) and my recommendations come from my own personal experience which may not be applicable to you. I hope they can help you too!

lgoldie · March 2014

Awesome. You covered a lot and I feel better.

amarantha · April 2014

Sage : I really enjoyed reading that. Thank you !

mripp · July 2014

Thank you Sage! I am printing this list to keep on hand, be informed and you are inspiring! I too could be categorized as a control freak AKA planner! So true this is not a journey we picked but we can manage our care and treatment and with doctors, family and friends support we will kick this in the a%$!!

2nd_time_around · July 2014

Sage, excellent thread! Several other threads on BCO contain bits and pieces, this is a great one, especially for newbies. Mind if I pass the thread along to others?

Have never heard of Pedi-Jams, will check this out. Similarly, I use something called a Frogg Togg towel (got mine from Bed, Bath and Beyond). It's a thin synthetic-fiber towel which cools skin (I drape it around my neck as the back of my necks sweats the most). B3 carries this usually during summer months.

Iwannacookie · July 2014

Thank you for this gift. I am at the starting line of my treatment. I will print your list out to have at the ready, as I need it.

yensmiles · July 2014

Thank you so much for this post! I really enjoyed reading it, and laughed at some parts too! Great information!

Imheretoo · July 2014

Thank you so much, sage, for the caring, time and thought you put into that great post! Much appreciated!

JeanaS · September 2014

Thank you for taking the time to make this list, Sage. Lots of good tips and honesty about things the Dr's usually gloss over or avoid.

Sopravvissuta818 · September 2014

Many thanks for posting. I'm preferring for radiation next month and appreciate the product information and expectations.

2nd_time_around · September 2014

bump

zuri43 · November 2014

Sage.....thank you so much for all of the info! I start chemo Nov.4th, then a mastectomy, then radiation and hormone therapy. You have answered many of my questions and quelled a lot of my fears! Thank you so much!

LauraW68 · November 2014

Wonderful info! Thank you!

petaluda · January 2015

Sage , I am about to start chemo This is my second time ( the other breast ) The first was 20 years ago I had a terrible time with it At the time there was no Internet and no help The treatment was very aggressive This time I have more information and thanks to you a lot of tips to help me even farther I am triple negative also But , I do not understand why were you on Tamoxifen if your tumor was hormone receptor negative ?

sage · January 2015

Petaluma... The first time they tested my tumor it came back slightly positive for ER (PR- & HER2-). My Oncologist thought it best to start the tamoxifen as the tumor could have components that would benefit from the estrogen receptor modulation. So sorry to hear of your second "battle" with this nasty crap. You are right that there is so much info out there and that is a real blessing. I will say a special prayer for you tonight to find the grace and strength to see yourself through your treatment. God bless

sage · January 2015

I thought of a couple more items that might help. First, you should know that you will have some pain on the backside under your shoulder blade where the beam exits your body following the completion of your radiation treatment. The muscles will be sore and tight. I used a heating pad and massager for months and today I have zero pain. Second, some have had success with magnesium (250mg) for hot flashes. I use a low dose of Effexor (37.5mg) and it seems to help. Lastly, I used a combination of cocoa butter (with collagen and elastin) and Olay Regenerist on my skin following radiation. I figured if they could be used for stretch marks and wrinkles, they could rehydrate and fix my damaged skin. It totally worked for me! Hope it can help you too

2nd_time_around · January 2015

bump

2nd_time_around · February 2015

bump

2nd_time_around · February 2015

bump

2nd_time_around · February 2015

bump

sas-schatzi · March 2015

Bump

hopeful82014 · March 2015

Sage, thanks very much! There's a ton of helpful info here.

My RO didn't mention the pain/burn on the back of the body but I've seen it referred to elsewhere, as well as your comment. Do you know if that's a fairly universal experience? (My RO kept saying things to the effect that since I'm slender I won't have as much reddening, etc. I am beginning to wonder how trustworthy she is - which is not a good thing to be thinking about one's RO, or any doctor.)

Thanks again for your time in putting this together.

Top 75 things you can do to TAKE CONTROL during your bc txt

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