A friend of mine has breast cancer. When she shared the news with our friends she told us she was facing breast cancer surgery. Our friends responded with an extraordinary outpouring of very personal advice and support based on their own experience.
In a modern twist, this group of friends have never met in person and we don’t know anyone’s last names. We’re all members of a special interest Yahoo Listserv – a kind of private group eMail based on a common interest. Even though the common interest was not breast cancer, there were many members who undergone similar breast cancer surgery.
Below is the advice and encouragement from women who have undergone breast cancer surgery. All the women gave me their permission to repeat their advice to benefit other women. I promised to conceal their identities and so I’ve used colors rather than names. Pink is the name of of the woman who was facing breast cancer surgery.
Please know that no doctors were consulted, this was woman to woman. The books recommended were personal recommendations and none of the advice, books or ideas were vetted or endorsed by MedShadow Foundation. In other words, take what you like and leave the rest. Work with your doctor and medical team. Stay strong.
Pink’s first post about breast cancer surgery : Please keep me in your thoughts this Tuesday as I’m scheduled for a core biopsy of a lump that I found in my breast. For years I admit that I rarely performed a self-exam…My GYN said she was unsure whether the lump was just part of the fibrous tissue normal to me. However, because I, the patient, identified the lump as new she ordered a ‘diagnostic mammogram.’ When I arrived for the mammogram the nurse advised that IF the Radiologist noted anything in the film they would have me stay for an Ultrasound. The Radiologist told her he was unsure and said that because the patient feels a lump I should proceed to have the Ultrasound.
At 8:45 the very next morning I received a call from Radiology department stating I needed to come back that day (morning if possible) for additional Ultrasound images. The Radiologist was present and stated it was from watching the live transmission (movie) that he could verify this was a lump. Because of the size of the lump they scheduled a core biopsy vs. needle aspiration.
Just shy of my 58th birthday I somehow felt a lump would not be something I would find. My diet is primarily plant based. I’m quite active and exercise most of the time. How wrong I was and how relieved I made the decision to make self-exams part of my routine. Finding lumps early is imperative to treating early.
In other recent posts I’ve read from some of you that breast lumps can come and go with what we eat, like soy or flax. I read labels most of the time but admit I may be eating both of these products that may cause benign lumps. I will share results when I receive them.
Pink: Well following my Ultrasound-guided core biopsies on Tuesday I finally received results just minutes before 5 PM tonight. Positive – breast cancer. The Pathologist identified the 7 samples as ‘Invasive Ductal.” Amazingly, I feel very relaxed and mentally and physically I’m ready for the fight. My quick Internet search tells me ductal means milk glands. As an aside, I never delivered a baby and therefore never nursed. The WebMD website that described Invasive Ductal breast cancer mentioned in many cases the lump can be removed, followed by radiation and patient may NOT face mastectomy for this particular diagnosis. That relieves me greatly. The Radiologist told me the recommended Oncologist or one I choose will quickly follow up with additional tests to make sure they are treating all areas, if more than the 1 large lump – 1 inch.
I’ve spent the last hour talking with my sister who recommends I fully investigate my options under guidance of Naturopaths. That would be my desire, too, as I want to get rid of the cancer as safely as possible. The thought of radiating my good cells scares me. I’m open to all of your suggestions, experiences, etc. It’s your testimonies that mean the most to me. Thank you all for your thoughts and prayers as I cannot believe how calm I feel.
Jackie: Find some sports bras that hook on the front. They work the best. I slept in one for months. Definitely get button up tops. They really make a difference.
I am sure when you are ready you find some books you are comfortable reading. A good one for the situation is Chicken Soup for the Breast cancer survivor and breast cancer surgery.
Good luck and I will be keeping you in my prayers.
Pink: Joanna,
Your words of advice and description of your personal experience with breast cancer are not only welcome but so much needed at this time. Thank you for taking the time to outline the path you chose and one I may consider, once given the full picture of my case. Your book suggestions sound wonderful. The links to the books allowed me to hear audio portions of the books and I will purchase them both.
With every encouraging word from friends and family, every bit of advice of what to eat, what to avoid, how to push out the negative and surround myself with the positive…. all of these wonderful things confirm what I’ve known for a long time. In times of personal need we can overcome the worst by drawing on and accepting strength and love from all of those who offer. I ACCEPT !!!
I’m loving all the book recommendations so if any of you have more please keep them coming. My plan is to have an arsenal of books and images that will keep my mind focusing on endurance, recovery and an even better life in the future if that is even possible. I have lived the most wonderful rich life with my husband of 37 years.
I’m smiling now because just last night Dave reminded me that he fell in love with me while we were in high school together. The day I stood on stage as a Sophomore, reciting my speech while running for Vice-President (and won) he said he knew in his heart that I was the one he wanted to spend his life with. He proposed marriage to me at the age of 16, while Seniors, and I accepted when we were 20. What an amazing life I have lived and I’m not done. Am up for a very good fight!
Thank you all,
Rae-An: When I read about your diagnosis, I thought, “Yup, been there, done that.” I was diagnosed with invasive ductal cardinoma in 1989, just shy of my 38th birthday. I had a lumpectomy followed by radiation. I didn’t need chemotherapy. I agree with everyone who spoke about attitude, and it sounds like you have a great one. My attitude was, “OK, there’s something in me that doesn’t belong, they’ll take it out, and I’ll be fine.” The other thing to remember is, “This too shall pass.”
Pink: At the suggestion of a friend I’m starting a Journal. She assures me there will be days I wish I hadmore strength and to read my own entries written on the better days will help give a boost. Another friend recommended I toss a blanket in the dryer, then wrap it around and give myself a warm hug. This works for restless nights and days when you just want to sigh, ahhhhhh….. So far I have tried this with my cozy robe and it does work.
My 90 minute consult with Oncologist Surgeon is set for this Thursday. Will keep all updated as I move through the steps of discovery, ie., cancer location, (hopefully limited) and options for treatment. Invasive ductal seems to indicate the cancer is also in the fatty tissue. Praying the lymph nodes are free and clear. On that note, my sister highly recommends I buy a mini-trampoline. Not to use for jumping but rather light bouncing. She said it helps drain
lymph glands. Have any of you heard of this before?
Jackie: A thought about rebounding or anything else that might help with drainage of lymph nodes: It might be a good idea to wait until after you’ve had your surgery and have a clear(er) picture of lymph-node involvement (which hopefully, you won’t have). Anything that stimulates the lymph nodes might cause them to distribute cancer cells if any have already gotten in there.
They’ve made so many strides in the treatment of breast cancer since I had it 25 years ago, and I’m sure you’ll be in great hands. A support system is also so helpful, and you are so lucky to be surrounded by people who love you and want to be there for you. And isn’t it amazing to have this online cheering section of sisters!
Pink: Hi,I just want to thank you all for your letters of support. Today is my last day at the office for 2 months so needless to say I have been very busy getting every thing in order before I work from home, as allowed. I’m told to not lift my arm above my head for 2-3 weeks I’ve also been making some arrangements around the house to better facilitate myself and my husband for the day-to-day things we need to access.I do have questions regarding clothing that has been on my mind. Since I only have a couple more days to shop… with a lumpectomy and recommendation for ice packs, Arnica and Aleve (she also prescribed pain killer), will I feel better wearing a bra at home to help support and hold the ice pack? Following my core biopsies I actually slept wearing my loose bra to add a little more support and it helped for 3-4 nights.
I’ve been looking for a bra that fastens in the front for ease of wear. Any suggestions from those who have been there will help. I did buy a few more button front blouses as pulling any shirt over head will not be an option.
——————–
They usually give you a bra after the breast cancer surgery (well you come out with it on) then I ordered two more from the medical supply store. (When you totally recover then if you have a Nordstrom’s go there and get fitted for bras and only buy a couple as then 3 months later get fitted again. My doc send me there ! No cheap bras ever again ! 😉 )
I also got an old fashioned ‘housecoat’ in the nightgown dept of Kohl’s that buttons up the front. It was actually a Ralph Lauren or Chaps brand. Perfect for post surgery and 24 hour a day wear !! you can probably order on line.
And I got a foam wedge for about $20 to put on the bed for sleeping . Get that this weekend as you will need it.
Then go onto the cvs.com website and order the small ice packs which are under the brand name of ‘peas’ . They are awesome to wear in your bra after breast cancer surgery. Depending what they have in stock either get the little circles or get the kids one – ducks, pigs etc. My doc thought it hilarious when I pulled the yellow duck ice pack out of my bra.
And get like a shawl or something to put around your shoulders. Bed jacket too cumbersome at first.
Go in the kitchen and clean the counter and put everything you need on the counter -esp tea and coffee, spices and a few cereal bowls and small plates and after surgery have husband put a little bucket of ice on the counter with a jug of milk in it for coffee.
The refrigerator door is a killer after surgery !!!!!
And my doctor put me on VitaMedica Physician Formulated Nutraceuticals
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recovery support vitamins. Including arnica for bruising and bromelian to reduce inflammation.
Now my doctor put me on them two weeks before as well as a few weeks after. I think they really helped.
http://www.dermstore.com has them on 30% off sale. so check them out. Obviously ask doc if okay but my surgeon prescribed them for me so …. 😉
I just have one more small piece of input–whenever it gets difficult, just remember, it’s temporary. You will heal and be better than normal soon enough. I know, it’s a no-brainer, but really hard to remember sometimes.
Joanna: Regarding headaches, a little lavender oil (essential oil), neat (i.e., not mixed with anything) rubbed behind the earlobe, at the nape of the neck and/or on the temples sometimes works wonders. You can also put a bit around your eyes if you have pain there, but be careful to use only a touch so that it doesn’t find it’s way to your eyes. Linda, you’re so lucky to have family, friends and this group with you. When I went through my saga, I was in the midst of a nasty divorce (really nasty) in which, in the division of property, my husband got all the friends. I literally had almost no one. Some very wonderful people whom I hardly knew did step up and we’re good friends to this day. I’m sending up prayers for you and holding you in my thoughts. I have a strong feeling that you’re going do come through this very well.
Since you can’t use blood thinners, Regarding headaches, a little lavender oil (essential oil), neat (i.e., not mixed with anything) rubbed behind the earlobe, at the nape of the neck and/or on the temples sometimes works wonders. You can also put a bit around your eyes if you have pain there, but be careful to use only a touch so that it doesn’t find it’s way to your eyes.
Pink: I’ll go out and buy some Lavender oil. It is one of my favorite scents,
especially for aroma therapy. A lavender bush outside my kitchen door
gets pinched often so I can fill a small vase in my kitchen window.
Often I’ll rub the leaves between my fingers to release that very
pleasant and calming scent. Liquid lavender soap can be found at each
sink in my house. My headaches are rare so I’ll be prepared for the
next time.
As we sisters share our experiences over the years it enables us to
learn of each others backgrounds. I’m so very sorry you experienced a
nasty divorce especially during your diagnosis and radical treatment for
breast cancer. Thank God for new friends and strangers who are
gratefully compelled to offer help in our times of need.
Over the years of reading your posts I’ve identified that you are
particularly strong and quite an able bodied person who fights for just
causes and is frequently first in line to answer most posts. Thank you,
Joanna, for really being there for me in my time(s) and offering such
beneficial advice. I feel well prepared to meet my cancer head on.
As I’m now just 4 days from breast cancer surgery different practical thoughts are
sinking in. Just rolling out of bed will be a challenge. The notes from
my surgeon are to roll out of bed (not lean on right arm) which means
I’ll have to switch sides with my husband. This weekend I’ve tried
getting dressed using only my left arm and pulling on socks, etc.
Training my cats to not jump on me or hold down the blankets next to my
side will also be a new and necessary for ease of turning and getting
up. *Just more things my husband will help with. You’re right that I’m
fortunate to have him to help me.
Today we’ll take a drive out of town and spend some fun time away from
familiar surroundings. Tomorrow we’ll continue prepping house and then
Wednesday we’ll stay over-night in the city where my surgery will take
place, 2 hours away. I’ll bring pillows for the ride home to rest my
folded arm on and add support where needed.
Pink: Here is the most disturbing news I have received to date….. Both
surgeons agree that I have had Breast Cancer for at least 5 years!!!!!!
WHAT??? Mammograms have been part of my annual procedures for at least
8 years. You can bet that I’m now an active proponent for MRI breast
imaging if not annually, at least every other year. My Surgeon pulled
up my mammogram from 2009 and we compared it side by side with the image
just 3 weeks old taken the day of my core biopsies and insertion of a
metal clip (placed at tumor site). There is relatively no difference
between the two images.
I asked her why my tumor which is over 2 centimeters (1″ around) does
not show up. Her answer was startling. She said she sees this
frequently in ‘lobular’ cancer but not in the ductal. Lobular cancer
usually is visible in the MRI’s. It’s likely my dense breast tissue
continues to mask what is within. She wasted no time telling me that if
my Pathologist identifies my cancer as lobular then she will promptly
schedule an MRI for BOTH breasts as typically the cancer is in both
breasts for lobular, in which case double mastectomy would be
recommended treatment.
Pink: Finally, I’m checking in with you. Following my lumpectomy for breast cancer last Thursday I’m feeling pretty darn good.
My strength has continued to build each hour of each day. Saturday night I felt well enough to make spaghetti for dinner, a personal milestone I might add. Earlier that day my husband allowed me to work around the kitchen as long as I resisted using my right arm and all went well. Post-op instructions to limit lifting, using chest muscles and raising my right arm are quite clear and I understand the need not to pull stitches. No bandages following breast cancer surgery, just dissolving stitches and clear glue! I have two lovely incisions about 3″ long each. The surgeon told my husband she took only one lymph node which felt soft and supple. She felt a few other nodes (in place) and they felt normal, too. GREAT NEWS!
Pink: Hi Sisters, Today I found out that my breast cancer ‘receptor panel’ came back from Pathologist. Apparently, I’m ‘Triple Negative’ which means the cancer is a different animal and must be fought on a different more aggressive level. At my Surgeon’s request I’m having the BRACA test tomorrow at her office. The results take 2 weeks to come back so once again we will be in wait and see mode.
From what I’m reading, if I’m BRACA1 or BRACA2 positive, then the cells are a mutated gene.
Joanna:
Pink: It has been awhile since I’ve checked in so here is an update on my
Breast Cancer. My BRACA test came back negative, which is great news.
However, with all I have learned about Triple Negative Breast Cancer I
have decided to have my Surgeon perform a double mastectomy. This
surgery is scheduled for December 4th. My Plastic Surgeon will also be
on sight to perform the first stage of reconstruction surgery.
Next appointments are to meet with my Oncologist next Monday, 11/24, to
discuss treatment options followed by meeting with my surgeon the next
day for the official Pre-Op discussion for double mastectomy. From what
I’m reading on the Triple Negative Foundation website, chemo is pretty
much always recommended (different cocktail options) to aggressively
fight this cancer. I’m also reading there is a higher chance of
recurrence in the brain and/or lungs. Yuck!!! Being the POSITIVE
thinking person that I am, I will not let statistics govern my pathway
or thought process. As far as I’m concerned, this breast cancer is
it….. no more.
I’ll keep up with treating my body like a jewel giving it the nutrients,
exercise and water that it needs. I’ve also learned that cancer cannot
thrive in an Alkaline body. Cancer prefers acidic cells and feeds on
sugars.
Will let you all know how I’m doing following breast cancer surgery. In the interim
I’ve contacted the American Cancer Society, have already talked at
length with two other mastectomy patients/1 is a volunteer and I’m
taking in all the advice I can about how to best prepare for a double
mastectomy. This week we will be purchasing a triangle-shaped wedge
pillow for bed and couch. There are a couple of shorty bed jackets I’ll
be buying. Cooking up food to freeze, etc. Our friends offering local
support is huge so Dave will have all the help he needs, which relieves
us both greatly.
QUESTION – Do any of you in our group also share the ‘Triple Negative’
diagnosis???
Pink: Reading your email has brought me more relief that I have chosen such dramatic breast cancer surgery. I’m sorry to read you had to endure a minimum of 3 breast surgeries. It’s disconcerting to read that with your chemotherapy (which works on the whole body) ‘changes’ hit you again just one year later in your other breast. Was that tissue examined and did they confirm any cancer in the right breast? Just curious.
Yesterday I talked with my Oncologist. I phoned him to make sure he had all of my test results and knew way ahead of time that he would be counseling me on treating Triple-Negative BC. In no uncertain terms he said he would be recommending chemo cocktails of AC-T to aggressively tackle all remaining cancer cells. He also encouraged me to seek a 2nd opinion and stated he would be certain other Oncologists would support his recommendation.
As calm as I have been I must say I am VERY nervous about agreeing to any form of chemo. I asked if I could have some weeks to recuperate from the double mastectomy and reconstruction surgeries. He said normally that would be the case but given the Triple-Neg diagnosis and the fact my surgeon says I’ve had cancer 5 years he wants to get started right away. This ball is moving very fast now.
When all is said and done I want to extend my life and years. The news I have this rare form of BC and trying to process the stats I’ll be lucky to go 5 years without recurrence is hard to accept. I’m fighting harder now to keep positive that I can tackle this one with diet and exercise, following double M.
Thank you for keeping the prayers and positive vibes coming my friends. I welcome suggestions and words from your experiences. Still waiting to hear if ANY other DES daughters in our group have ever tested positive for Triple Negative cancer.
Fran:
Su: 1So far I’ve been able to duck any cancer issues (fingers crossed it stays that way!). Even so I’m fascinated to listen in on Pink’s progress and all the wonderful suggestions and support. I have only one thought to add because I haven’t heard someone mention it yet, statistics are always years behind. Think of it this way, the statistics today of ten-year survival rates are based on those who had cancer and were treated ten years ago — with the protocol that was in place then. Knowledge, research, drugs, surgery have all improved since then.10, 5 and even 1-year statistics are a worst-case scenarios today.
Thanks for the inspiring letters!
Pink:
Pink: I’ve been home recuperating for almost 2 weeks and figured I should
check in. I’m feeling relatively well, along with minimal pain meds.
It’s very difficult to stay down and I’ve found that to my own
detriment, I may have caused delay of removal of my tubes since I’ve
moved around too much.
My first appointment with plastic surgeon is this Friday. She’ll decide
if my drains can be removed… only if lack of output qualifies. My
other surgeon said I look great and that she and my plastic surgeon had
a FUN TIME working together. While this is not typical I’ve decided to
attach a photo of my surgeons with hubby and me prior to surgery.
All in all I’m feeling and sleeping pretty well. Dave has kept up with
the challenge and making me stay down more and more. I’m feeling guilty
about not starting my Journal yet, which will start in the middle and
then I’ll back date as needed.
Lots of good thoughts going out to all of you and I do thank you for
thinking of me. We ALL have our physical challenges and I’m relieved
that a qualified outfit such as MedShadow will pick up the gauntlet and
move us forward.
This season I see life through new eyes. The experience of simple joys
each day cannot compare to what one usually takes for granted. Thank
those around you each day for being an important part of our lives and
watch their eyes glow.
Jackie:
Pnk: Each one of your emails lifts my spirits even higher, if that were even possible. Thank you for each mental thought and those that you jot….
In just under 2 hours I’m scheduled to have the 2nd drain removed by a local physician. Today marks my first day without pain meds so all is looking even better. Seems most times I’m writing to you my hubby is in the kitchen working on some delightful dish. Today is no exception as Spring Vegetable Soup is in the works. I’m watching a Pink Floyd video, behind the scenes with remaining group members and keeping calm as the day progresses.
Jill, I’m so sorry to read your Mom is fighting a serious illness. At 92, she has a stronger fight than many of us so my prayers are with you and her as she successfully overcomes this challenge. (Thinking positive here).:
Each one of your emails lifts my spirits even higher, if that were even possible. Thank you for each mental thought and those that you jot….
