Lumpectomy Lounge....let's talk!
Comments
-
Mel- sorry to hear about the bad day, hoping today is better.
Ayr- in your pocket
LTFly, Italy- you're both looking great. And LTFly- maybe a good cry (before you see mom if you don't want to cry with her) might be in order. But dancing's good too.
Sandy- good luck with your sleeve, however things work out.
A meetup sounds amazing and fun, and yes, totally lusting after that entire kitchen.
-
Melclarity - You hang in there. You can do this, sister! This is one of the hardest things you will have to face in your life, but have you noticed that you get the most tired when you look back at something that was difficult and ask, "How can I keep going?" Well, you did the hard part, and you're tired looking back and imagining what is ahead. (But you did the hard part!!) This next part-- the students, the mommy, the household-- you can do it, but the thought of it is exhausting you. Re-set your brain to thinking, "If I kicked a$$ in chemo last week, I can get through tired."
*******
So, I thought about downloading that app to see my survival score, and then I thought about HOW FAR RESEARCH HAS COME in the last 5 years, and decided to look forward and not backward. Think about it, 5 years ago, people were dying because tumor information wasn't available to researchers.That was only 5 years ago!!!!
Here is a little history:
Should you be able to patent a human gene? (podcast on Ted.com 1/27/16). It's about Myriad, the original company who did BRCA1 and BRCA 2 gene testing. They patented the BRCA gene mutations, and told other companies they couldn't use the gene for testing anything. Normally, you can't patent something that is basic common knowledge nor a fact of nature (like you can't patent gravity nor an element like Hydrogen). Well, isn't YOUR TUMOR and YOUR DNA something very basic for your survival, and similarly, if your DNA has a way to CURE your cancer, shouldn't that information be available to anyone who wants to advance science (and cure different cancers)? The problem with patenting DNA is that companies are out for the $$$, and they don't want to share it... I mean, businesses are in the business of making money.... Well, the problem with not sharing is that the company stopped sharing data with international science community and fell behind in science. Additionally, just 5 years ago, 12% of women were told they were negative but were really positive (and they died!) because there were other BRCA mutations the company wasn't looking into because they were making a fortune on the monopoly of the original test. Well, the ACLU, like them or not, they said, "Hey, you can't patent a gene." So, they sued Myriad. In 2010, the case went to the US Supreme Court where Justice Sotomayor (I love her) said that DNA is "just nature sitting there" and Myriad didn't invent anything. You can invent and patent something new, but you can't patent a gene. The justices ruled 9-0 that you can't patent a human gene. After the ruling, 5 different labs offered to do BRCA testing, ended a 25-year patent on DNA testing. Now, labs are sharing starting to share information --and the President last week encouraged even more sharing in the International science community. The last 5 years have led to a lot of the immunotherapy cures for cancer like Jimmy Carter had, and they think many breast cancers can have that, too.
So, let's look forward! Let's tell our stories and encourage everyday citizens to rally around the science community and share information, not so they will make money (they will), but because they can save lives. Let's put a face to cancer and say, hey, I'm your mom, sister, wife, best friend, daughter or future scientist.
Let's celebrate the advances and not peek at apps that tell us about survival rates of the past! *stepping down from the soapbox now
-
LTF- and everyone here... I've had maybe 3 bad days out of 50ish, that I've sucked up the sorrow and saved it for bedtime with my husband. I told him my fears and cried myself to sleep. But I woke up the next day strong and positive again. Death is not in my vocabulary or thoughts. People have texted and inboxed me about the "horrible news"... I'm still thinking "people, I'm fine. I'm going to be fine. I'm going to come out of this stronger than I went in!" 2 days after surgery I went to a movie. 4 days post op I walked 3.4 miles, went out to lunch, window shopped and enjoyed time with my daughter and soaked in the sun and the wind and the fresh air. Last night my daughter made dinner while I sipped on a glass of red wine. This weekend I want to ski(but will most likely take a walk in the woods).
I can't imagine lying in bed in a fetal position in tears. That, my friends, is the kiss of death. I'm a firm believer in mind over matter, mental strength. My father fought leukemia and after having his rights read to him 3 times, he's alive and well and still working while 12 years out now after a bone marrow transplant. He got through it with mental toughness.
We are a "super woman" group. We are strong and brave and beautiful and funny and smart! We may have our moments, but let's remain strong and positive together.
Ok... That's my inspirational soap box speech.Now I'm Off to get my hair highlighted... Even though I might be losing it!! 😁
-
i'm a lot like you MLP, nobody can believe the things I've done throughout this. Hostting my daughters bat mitzvah, going skating 2 weeks after surgery, I walked 3 miles 2 days is after my lumpectomy. I refuse to let cancer take me away from my life, or let cancer be my life. I'm trying to make dealing with my cancer a small part of a big life. But some days just suck! Think it's a combination of looking at that stupid app yesterday, finally having my head shaving, and feeling a bit lonely because I'm off work but actually my side effects are quite manageable. This is why am working through my treatment as much as possible, I do not do well with alone!
-
Lovestofly - Aww, hang in there. You're doing great. I can attest to what your are doing on Fitbit!!!-- You're amazing! We are all allowed to have down days! Those are the days our fighting spirit is resting up.
-
You gals never cease to amaze me with all that you do while slogging through chemo with families and other responsibilities. I'm worn out thinking about it. Sloan is right about looking ahead. You've made it this far, you can keep right on going. And let's face it, if you're tired or have extra stress (what else can cause stress in our lives??), depressing weather, all of that can make you feel blue and weepy. There's nothing wrong with being blue or weepy. I know I have been. Tell us and we'll join your pity party (well-earned) and then we can get it out of our systems for awhile and get on with our lives. Don't ever feel bad about feeling bad!
HUGS!
-
I was 26 when I was diagnosed with MCTD (autoimmune ailment). One thing that helped me a lot then (and now ) was ....drumroll.....reading! Victor Frankl's Man's Search for Meaning, and other "heavies" as well as lighter fare really kept me from going too far inward at times (although that is sometimes where it's at).
Personally I so admire all of your stamina, commitment to your families, and caring enough to post here. YOU are doing just fine.
HUGS Galore today.
-
I want to look ahead so much that cancer is just a tiny dot in the rear view mirror. It is hard to do that when you still have surgery ahead of you and twice yearly monitoring , every 4 month doctor visits and are waiting for your daughter's genetic testing results. All in all though I just go through life one minute at a time. I am used to stress and grief being a part of the fabric of my life. 17 years ago this week my precious 7 month old son came down with encephalitis. Nothing has been the same since then. When you live with grief as a constant companion it changes you. I think it makes you stronger in many ways. My PS told my son I am "stoic". I think that is probably a true description. What choice do I have really. Peggy would understand this. When your life centers around taking care of someone's very basic needs you can no longer focus on yourself. I do believe though that last year when my son nearly died and we had to call 911 I developed some PTSD. Breast cancer triggered that again. My mom is dying from Alzheimers. My dad died two years ago from a stroke in a nursing home and my oldest sister died of early onset Alzheimers nearly 4 years ago. I am ready for a break.
Blech, sorry for putting all that out there. On the upside I have a great job that I love, my husband is my best friend, I adore my kids and my grandson makes me smile every single day with his hugs and silly things he says.
-
I have a question for those of you that have had a lumpectomy and a re-excision lumpectomy? do they do the wire localization again for the 2nd surgery? I had a lumpectomy on the 22nd of January and it went really well, until they called yesterday saying they didn't get clear margins. I really don't want to go back in but I know I have to. I was told the 2nd time is easier but I'm still nervous. That was the first surgery of my life and it was scary for me. So wire again? I assume so but can't find any research about it. How do they know where to go back in if there's nothing left (wire or clip) from the first surgery? Any advice is greatly appreciate. Hoping for less pricks and needles the 2nd time around.
-
Hi there. How come you had a mastectomy after lumpectomy? Your grandson is adorable!
-
Molly- such a cutie pitootie!
Sloane- well said!
Peggy- I equate it to having children. I had 3 kids in 5 years by the time I was 30... You're on autopilot. You do what you gotta do!
This may be the last time I have this done... Who knows! But I'm going out to dinner tonight and I'm going to Rock my new highlights!
-
Payton- I had my lx and snb on the 22nd too! I'm still waiting for the pathology results. That's a very good question... But I'm thinking they must go back and clear out another layer around what they originally took...?
My bs told my husband that the tumor was about the size of a quarter and they took out a silver dollar sized area.
-
Molly, you are very strong. And yes, when you're a caregiver, you just do what you have to do - being tired, stressed, exhausted, mentally dull, doesn't matter. I'm with you on stress activating BC. Your plate seems quite overloaded. Wish I could help ease it for you - you have it coming from too many directions. It certainly would be nice if you could arrange a vacation with DH and forget about everything and just be "Molly" for a few days. Our own self gets shoved aside and lost with our caregiver roles (which we gladly do). That was the hardest for me and you've had far more years of it than I had. Don't think about your next appointment. Live for today. Find things to do that "spark joy" for you - a glass of wine, a cuddle with that adorable grandson, holding hands with DH, an hour lost in a book. But make time for them each day - might even help you stay sane
HUGS!
-
Payton4Hannah, Welcome to the best place you don't want to be! We're warm, welcoming, comforting and informative (sometimes a bit nutty). I can't answer your questions, but please help us by completing your profile (including projected treatments) and "make it public" (each and every thing). Then we'll know what your diagnosis is, what treatments you've had and if your situation is similar to someone else's.
Also, this is a very busy board. When commenting on something someone wrote, would you include their name so they'll know you're talking to them? We all get confused (and rather easily at times) so it helps us all.
HUGS!
-
Payton, I ended up with a mx after lx because when they got in there to remove the tumor my BS found "extensive" LVI (lymph vascular invasion) and hard as she tried she could not get clear margins on me. She did the best she could and told me at my post op that mx was now necessary. There are a few ladies on this thread that had to have re-excision. I am sure someone will answer your question. Oh and welcome to our group! Thanks for the compliment about my little honey.
-
Payton, my tumor was 9mm and they found another (from pathology) that was 9mm. The chunk they took was 5cm x 3.5 cm by 2.5 cm. My BS wanted to make sure they got it all - I still had lovely hematomas from the biopsy so they couldn't tell how big my tumor actually was.
MLP3, good for you! Coloring your hair will perk you up! Feel and be sexy tonight!! (I will NOT be in your pocket )
HUGS!
-
MLP3, I love the photo!
-
Hello everyone! Sloan issued an invitation to come join this party so I decided to take her up on the offer.
I looked back a few pages so I might be up to date and I see a few familiar faces so hello again to those and it's nice to meet you to the others.
I had surgery last May, chemo from June until November and now I'm in the middle of rads. I need sunglasses because the light at the end of this tunnel is shining bright!
-
MLP - You are right you do go on autopilot, and you do what you gotta do and I know the past 5yrs have been very strenuous, I lost my marriage, lost my home,had to move with my kids, work full time, BC twice and raise my kids on my own for those 5yrs with no support. I am so proud of what Ive achieved and what I have done, cos man its been an incredibly hard road.
Thank you all of you! Sloan I actually burst into tears and its 6.30am here, reading your post, you are so right. You articulated exactly how I was feeling and its tough. Im still achey, and tired, but am determined!!!!! I love my job, but trying to nurture me at the same time.
LovestoFly - Remember we are all different, and you are ALLOWED to have a bad day!!! the bald thing is HARD to get used to and yes you have days that it hurts!!! Of course!!!! Ive been there!!! AND I was on Tamoxifen for 4yrs!!!!! and NO SIDE EFFECTS, NO WEIGHT GAIN, NO DIP IN SEX DRIVE AT ALL. So please take heart take a deep breath, and one step at a time. You're blitzing Chemo Sister!!!!! You will tamoxifen too!!!
Gosh, havent got time to mention everyone, you know who you are, Molly, Happyhammer, MLP, Brit. I hear you Molly - THE MOST IMPORTANT LESSON THROUGH THIS for me has been in the face of lifes challenges - you have to PUT YOU FIRST. For the first time in your life, so so hard, but its about honoring yourself in all your complexities and putting aside in moments when you can, the mother, the sister, the daughter, the psychologist, taxi driver, nurse and more many hats we all wear.
Today I say....To life...and challenges...is that all you got??? BRING IT ON!!!! lol
Love to all, for the support means so much. xo
-
thank you all!!!
Mlp good for you colouring your hair!! I'm sure it'll look awesome!!! I did mine too after surgery, felt great!
-
Peggy says it's ok to take time for me to be me! Lol
Payton- welcome. Best wishes on your re-excision. I get to find out tomorrow about my results.
Molly- great outlook despite your ongoing struggles and what a cute grandson. You're always welcome to get things off your chest.
Sloan, MLP and LTFly- *standing ovation* All of you put into words wonderful ways to just live our lives in our "new" reality.
"Those are the days our fighting spirit is resting up."
<3 this so much, Sloan. -
Welcome justmaximom! Any friend of Sloan...
-
1Step, it is not only "ok" to take time to be you. It is vital! Your soul or whatever you choose to call that bit of you that is yours alone, needs to be nourished. Perhaps not all the time but definitely regularly. Life is so much harder when you lose that and have to find it again.
JustMaxiMom15, Welcome! Nice to need the sunglasses, isn't it?
HUGS!
-
Hi Payton - I had to have a re-excision and I'm happy to say no wire the second time for me. I literally would not have known I had surgery the next day. The only issue I did have the second time around was a seroma that I ended up having to have drained a couple of weeks later.
Jill - the hair thing does get me down at times. I am still not comfortable in my wig and my constant headaches don't help. I had chemo yesterday and they had me fill out a form asking various questions about depression, anxiety, etc. Must have answered one to many with a yes because the next thing I knew there was a social worker down to chat (I have found this woman to be so useless so I was not amused - I am going thru cancer treatment, bald, have two kids and still working a full time job......yup.....it's stressful). I am right there with you about the weight gain and sexual issues freaking me out.....cancer had taken enough from me.
Peggy - as usual very good advice.....I lurked on the tamoxifen board myself and got scared about the next steps....but yes.....the women who are not experiencing side effects tend not to post as often.
MLP - enjoy dinner tonight!! Glad to see you are doing so well!
Cyndi
-
LTFly, I think you're feeling down because you're off your steroid high. Some people experience that after chemo.
I never asked anyone to download that APP! I'm a scientific type and the more info I have the better. I choose not to be naive I choose not to live with my head in the sand. It helps me ask my doctors direct questions about my treatment, etc. Knowledge is good. I want to know what to expect It doesn't mean I am not optimistic. I am. Or else I wouldn't put myself through this.
Everyone is an individual and we all have different treatments and different doctors and different gene pools. The Nottingham Prognostic Index is still being used today for all of us, whether you know it or not. It's part of our Dx. BUT for those who discount statistics let me just say statistics play a big part of your treatment. Your chemo and radiation. Your medicine dosage. Your annual flu shots. Your Oncotype Dx. Your car insuranceWhether your kids are accepted into college and what goes on sale at the grocery store. Whether McDonalds has breakfast all day or what a size 8 actually is. I could go on and on but you get my drift. It's part of everything.
I see many of you on other threads/ forums. Looking for more info Not everyone who posts has bad experiences. Some people are just looking to connect with other like minded people , like all of you are. This is,after all, a breast cancer website, that's why we are all here in the first place
Happy Thursday
-
Hi Payton4Hanna, I had a re-excision, so can answer that question! I had the wire the first time, but not the second. Before the second surgery I said to the surgeon "I know you know what you're doing, but last time there was all kinds of hardware directing you to the location. How do you know where you're going now?"
She explained that the tissue taken out is roughly cube shaped, and they mark it so that they know its orientation. So, that way they can tell which edge of the tumor cavity to address. My re-excision was much easier than the lumpectomy and I recovered more quickly. The results were "normal breast tissue." Even though the incision has been used twice, it is healing as well as my sentinel node biopsy scar. Hope you have the same experience! (For what it's worth, the scheduling nurse at the hospital assured me that this is a very common procedure.)
Molly, your grandson is adorable! And you are a strong, strong woman.
-
Payton: I had a re-excision, but no wire the second time for me. Recovering from the second was a little harder than from the first for me, but don't panic! Do you have an idea of how much they'll be taking out this time?
-
LTF - (((hugs))) Jill. I hope tomorrow is better
-
Has anyone not had radation? The type of BC I have only a very small amount of individuals have this form. I have been reading medical research papers and my type in studies does not show a difference between those who do or do not have radation. I understand it is a matter of choice etc. I also understand that argument of "do all you can" but the difference according to the stats is just not there for this type. I will be talking to my RO on Monday to learn more about the plan. He might even say No radation but let's watch it.
-
Welcome maxmom! It is a party here most days;)
jclc- re:stats... Yes, everything is a stat. Just like dr Susan loves book states, we are one percentage or the other. But just like a football stat of wins at home vs wins away... I believe we have the power to change stats. With the exception of the Patriots always losing in Denver😝
When I had my core biopsy the nurse was trying to comfort me by saying that 80% of tumors are benign. But guess what? I was in that 20%. A stat on the short end of the stick.
I am now curious about that Nottingham Prognosis slot machine... But I'm not sure I want to try it. Never really liked Vegas when I went anyhow😉
This waiting to hear the pathology report is starting to get to me😡
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team