Wait...Been There, Done That...
Hi All. So I had posted my initial post, here on BC.org in the Just Diagnosed topic area...
Then I found myself going through the topics and realized that this is where I should have landed.
Yep...Round 2 - ding....Geeze. Went through this 12 years ago (at age 40). Did my due diligence through Chemo, Radiation, 5 years of Tamox...and here I am, back at the beginning of the game.
Round 1 - on my 40th birthday in 1999 in the right breast. Stage 1 DCIS.
Round 2 is in the left. Stage IIA IDC. Had the lumpectomy and targeted the sentinel node +1 (nodes were clear). Diagnosed 3/22. We are now determining the best treatment options.
I must say, that FINALLY, 12 years out, I started to believe that I really might be out of the woods. The outside world kept trying to convince me of that at least. Not sure I ever believed that I would not have to traverse this path again. After all, my mum has endured BC twice (still going strong at age 77, though...so that inspires me)
My radiation oncologist actually said, "Hey, you've already had your round of cancer, why are you taking on someone else's?" Really I am not that generous. I would rather not Doc.
So - things have changed a bit since 1999. When I had my lumpectomy back then, they dug out the old lymph nodes, though I am thin, so the doc opted to only take 3...hmmmm.
This time, they did the blue dye and targeted the sentinel node +1 - both of which are clear of cancer. 
. But the cell grade is 3 and the tumor was 3.5 cm and the RO was not pleased with the narrow 1mm margins that the surgeon got. Though the surgeon says the tumor was up high and almost out of the breast tissue, so some of the surrounding was fat that fell away. I fear more surgery may be in my future, but do not know yet.
Ok...so the Oncotype DX test. This was not around the first time, so my MO did put me through the chemo ringer due to my age at the time.
Knowing my MO as I do now, my guess is that he will forge ahead with chemo if the number is even barely questionable. He stands by the fact that it is still one of the best amunitions they have. Nice for him...not so nice for me yet again.
So here I sit. I am sad, angry, upset and disillusioned. I thought I had already jumped through all of the hoops of fire.
Glad to have found you ladies...the Been There Done That group
Comments
-
Hi Dorrie. I've "been there, done that" also, First dx was in 1991, the second was in 2006. Am doing great and hope the same for you. The second time wasn't any fun either, but I got through it. God Bless.
-
Hi Ivy, Thanks so much for your encouragement. Glad to hear that you got through your 2 rounds well! Going to be a tough few months, but I will get through as well. Hope to talk more! Here's to a terrific Sunday doing enjoyable things.
-
Sucks to be back doesn't it? Second time had it's own challenges and I wish you the best as you and your docs determine your treatment path. Hang in there and let us know how you're doing.
-
Thanks. I will keep everyone updated.
-
Hi Dorrie: I'm back for the second time too. First time 19 years ago, had a 2 cm. node negative tumor in my left breast. Lumpectomy, rads and chemo. This time, a new primary in the same breast - bilateral mastectomy and in the midst of chemo.
I'm finding it much easier emotionally this time. The learning curve isn't quite so steep, even though some things have changed. I know what I'm dealing with.
What I don't understand from your story is that you say you had DCIS 12 years ago, but that you had chemo? DCIS never requires chemo, as it has not escaped from the ducts and poses no threat of metastasis.
Hang in there - you'll get through!
Joan
-
Hi Joan, Yes...on the DCIS. My ONC opted to do chemo because I was actually 39, going on 40. Because he considered me young for diagnosis, he felt he wanted to blast any possibility of it returning...Yep...that worked. Well actually, it's a new one on the left so, I guess, technically he did his job.
Gosh 19 years then back.Sounds like you have a great handle on it all though! I am doing better this time as well. Don't feel as ambushed. Waiting for Oncotype test to determine if chemo will be necessary this time. Rads and Arimidex or tamox....Will know more next week.
Take care - you hang in there too!!
Dorrie
-
Hi Dorrie
Well I'm a charter member of the been there done that group! I was first diagnosed in 2006 with a whopping 10cm tumor, ER/PR + as well as HER2+. I did AC and Taxol, 4 tx's each dose dense. I did chemo first to shrink the damn thing, then had a lumpectomy and rads, 7 weeks worth. Also did a year of Herceptin. Was D-O-N-E done with all tx's by October of 2007, and had the port removed in Feb of 2008. Was almost at the 5 yr mark when - ugh, in October of last year I was diagnosed with a recurrence, 1cm tumor this time, with the same characteristics, triple positive again etc. Instead of a mastectomy, which is the standard of care in such cases, I did a clinical trial where I had another lumpectomy (12/21/11) and then targeted radiation to the tumor site only, as opposed to full breast like last time (Jan/Feb 2012). I had 2 tx per day for 3 weeks, more tiring than I thought it would be. As per the clinical trial, I will have lots of follow up - the first year I will have an ultrasound every 3 months, second and third year every 4 months, then every 6 months. Mammogram every 6 months and my onc might order an MRI every once in awhile if he feels the need. The Oncotype test determined chemo again - this time, 6 rounds of TCH (taxotere, carboplatin and Herceptin) round 2 of which I have on Wednesday. One of the protocols of the trial is that I had to have started rads within 42 days of surgery so that is why I did rads before chemo.
So that's my story - sucks to have to be dealing with this again, but I kicked cancer ass once, I can do it again -
Hi Relda, Thanks for your story. Every time I read another woman's story I feel less alone in this mess. The language, the treatments, the emotions, the thoughts...we are certainly kindred spirits thanks to old Cancer...
I think it's fantastic that you are trying a clinical trial! Hey it's the best way for the medical community to try new things that will benefit our treatments against the damned thing. You are under constant supervision and surveillance - you will beat it again, no doubt! A friend of mind just went through a clinical trial for Lymphoma. Happy to say he is in complete remission and doing very well!
I find that people who are actually dealing with cancer, are tough. We do not shrink from the word, or the connotations of that word. We are "in it to win it" (as my cute little cheerleader niece would say)...We are prepared to storm the beach.
So...let's kick some cancer ass!! With you all the way.
Sending you hugs and good luck vibes for your Wed treatment.
Dorrie
-
Hi Dorrie -
"Been There ..." May, 1999 @ 40 ... BC of right breast. Lumpectomy, SNB, AC x 4, Taxotere x 4 & RAD x 35. I was on a clinical trial that ended in 2009. I moved on with living ... I have no other treatments being a TN. Did all the follow up appointments & mammos with the same doctors.
CRAP! ... that was the first word followed with sh#t, unfair & silence ... April, 2012 @52 ... deja vu with the left breast. A new primary! Lumpectomy, SNB, TC x 4, BMX with Diep & MS Free Tram. I did chemo lite and let the breast go. I informed all my Docs ... I don't want to do chemo again ... anything else needed to go .. must go. So, I just had an ooph. Getting my skin check next ... Again, I have no other treatments being a TN. I'm back to follow up appointments. All my docs still inform me ... you are young and in excellent health ... REALLY?! ... anyway, back to living everyday.
My kids will grad from college & high school in May. In '99 ... I didn't think I would see it. This time, I don't even go there. I was able to let go. You'll do what is needed and enjoy life. The last 12 months, I was able to take my husband & son on a month long vacation and a cruise between treatments. I know they needed a break ... I know I do.
Best wishes...
-LA
-
Wow, such parallel situations, though you definitely have had a tougher road with the C. There is a point where you just have to live life. After my first go round, I bought a dance studio - one of my life's dreams. 12 years later, the economy, age, injuries, and burn-out have changed everything. I kept on living...went back to school - will get my masters degree in Arts Administration next month!! I am, however, in a job that seemed like a great fit, but has not been. And, now here I am, another round with BC, a boss who makes the cancer seem like a walk through the park and the feeling that I am stuck between a rock and a hard place. Priority #1 is to get through this round of BC...then find a job, in my new field, that makes me live again.
If anything, being hit with BC for a second time reminds me that life is short and staying in situations that are less than optimal is doing me and my loved ones a disservice.
It took me a long time to think beyond cancer the first time around. I HAVE to think beyond it this time, or my present situation will take me down faster than the cancer will.
Well here's to graduating babies, empty nesting and getting on with life. You are in my thoughts LA.
xo
Dorrie
-
Hello ladies
Had tx #2 yesterday and was given Emend this time - it's definitely making it better than last time, but I am still mildly queasy pretty much all the time (as opposed to severely queasy all the time for 9 days like last time) and have zero appetite today. Which will make up for last night when the steroids made me eat like a mofo ;-) Getting the neupogen shot this afternoon, hoping it will be easier on the bones than the Neulasta was last time. Ouchie.
I have to say I'm a little disheartened on how much more difficult it is the second time around but I think that is to be expected. I'm 6 yrs older with a body compromised from the last time I did this. Just gotta keep moving forward!
-
Relda, I haven't started treatment yet...but it has been 12 years and, yes...being older is probably going to make it tougher
I should know more about treatment plans after next Monday.Glad to hear the Emend worked for you a bit better this time.
Yep...like my little namesake fish (Dory from Finding Nemo)...just keep swimming!! Hmm...need to add that to my signature.
Hope you are feeling well again asap!!
xo
Dorrie
-
Me too---1st one in 1982 - taken out in doctor's office -then had a liver, brain & bone scan. Mastectomy with re-construction.
2nd time: 2010 - same size (9mm) other breast - lumpectomy this time. No rads due to my age (76) still debating about the Aromasin.
-
Hi dandJ
I saw your other posts about joint pain with the Aromasin..the joint pain has got to be tough. I worry about what they may put me on as I am also ER+/PR+ .... They have said that Arimidex will probably be part of my treatment plan, but I worry about all that joint pain. Already suffer with arthritis in my hips....
My mum was rediagnosed at 75 (2 years ago) ....oddly, her doc put her back on tamox.
Best wishes to you
Dorrie
-
Dorrie-
Thanks ... I had "WOW" too after reading your post.
Cancer sucks no matter if it's the 1st, 2nd ... It's like a surprise life quiz that you aren't prepared for. It'll have you figure out your mental, physical & soul real fast. My question for myself after C ... do I want to deal with that later in life? I have learn to B#TCH and let it go.
I have control of my everyday life ... LIFE has control of my everyday.
Wishing you an easy 2nd life quiz ...
-LA
-
My poor hubby has been listening to me incessantly talk about this topic...and, bless his heart, he is being so supportive and caring, but I know he gets fatigued. Last night, however, he got a bit of a wake up call. I was sitting next to him on the couch on the site here...reading a thread and he caught the thread too. He just said, "Wow, all of these people are saying the same kinds of things you say!! I need to go on this site and read some more."
Our "everyday" is just different from people who have not been diagnosed and the outside world just doesn't completely get what it's like to be where we are.
I seriously think that it causes us, as a group, to be more caring of others, more observant of what is important in life, more tolerant. We have been forced to face our fears head on. That changes a person, no question.
I liken our group to soldiers on the battlefield. We are war buddies. We speak the same language. We have faced the same enemy. We know all of the weapons. We keep fighting because that's all we can do.
I must say I love your "surprise life quiz" metaphor, btw.
Anyway, it's a beautiful Saturday morning, here in Michigan. I hope to enjoy it to the fullest. I hope you can do the same LA!!
Dorrie
-
Greetings from sunny California, where unfortunately, I am not feeling too sunny! The Emend definitely helped but I still have the queasy's and have been feeling pretty lousy since last Wednesday's infusion. To top it off my boob was all red and hot on Thursday and since I have had 2 bouts with cellulitis in the past my onc decided to not take any chances and so I did 2 days of IV antibiotics (thurs & fri). So 3 days in the chair made for a pretty exhausting weekend. I think I slept 20 hours a day on Sat & Sun! Still feeling pretty icky today, I seem to be getting all the SE's I didn't get last time - persistent queasiness, taste changes, body aches. Not. Fun.
Heading in to get the neupogen shot in a bit - can't wait for this week to be over, I know I will be feeling better by the weekend. Ugh. I think I will go take a yoga class, try and stretch out some of these body aches......have a great week everyone! -
Sending you lots of hugs and feel good vibes Relda.
xxoo
Dorrie
-
Ahhhhhh so much better today - went to the onc's yesterday for mid-chemo CBC and check up, I was dehydrated, very low potassium and magnesium. Had a giant bag of IV fluids and felt sooooo much better afterwards. Imodium finally kicked in and I have finally had some relief from the Big D
Making the most of feeling better and I am off to play in a poker tournament! Woohoo!!
Have a great weekend ladies!
-
Relda...ENJOY!!!
-
Geez, its so refreshing to know that I am not alone.... Stories similar but different... So much is similar... The fears , the hopes, the ughs!
My story: April 2006 : RN working in medical sales dx with Right Breast IDC stage 2a, grade2, node neg, Highly ER+/PR+ , HER2 neg, OncotypeDx score 0, Lump/Rad/Tam did well, got through it all uneventfully.
Bought miniature horses during the summer of treatment, big horses the next year.2007 built a barn.
In 2008 went to Europe- Budapest, Vienna and north/ central Italy, i was flying thru my bucket list
2008 started showing Maltese and over the next years acquired 4. 2010 Another trip to Europe, this time Italy, Greecian isles via a Mediterrean Cruise...saw Croatia and Turkey too then a week in France including Paris.....keep on checking that list
2011 Hubby had Abdominal aneurysm....we stalled in that list.... Added a patio and stayed home
2012- WTF IS THIS LUMP????
This go round is a new Primary in Left Breast IDC, -ER+/PR+ HER2neg Surgery Lumpectomy scheduled for 4/18.RADS .. Rest is to be determined, Mammastrat test will determine chemo... I will get through this.... Right? -
Hi Cat...you are going to totally get through this with flying colors, and get back to that list. Wow!! You have done some amazing things!! Much more to come, I am sure!!
Sending lots of good thoughts your way.
xo Dorrie
-
A question to all" repeaters", did you found the cancer on what kind of tests? I get concerned because when I was dx I did not have a lump and my mammogram was negative and no family history of cancer, I do not get complacent even if I am a long term "survivor", I am fully aware it can come back after many years. You are example of how to handle a second time.
-
I totally found my lumps myself. The first time, I found it just before I happened to have my mamm scheduled. I checked regularly and that baby popped up pretty quick.
The second time, I had an area that we kept an eye on for years...a "thickening" but nothing to show for it on film and ultrasound etc...then the mamm I had in January showed a distinct mass - hard and definitely had morphed into something totally different. The fact that it changed so quickly was a bit frightening....got it out at Stage IIA IDC cell grade 3 Oncotype dx 32....glad we got it out quickly. There really wasn't anything there in earlier checks.
My docs were all surprised that I was back with it again - new primary on the other side 12 years later...but ...here we are.
I am at Chemo Eve....first TX tomorrow. Wish me luck!!
Dorrie xo
-
Best of luck, I have a reconstructed breast, I had some microcalcification way back on my chest wall,some were removed the others are gone.
I am guilty of not doing breasts exams.
-
Don't blame yourself. Doesn't always do the trick, sometimes makes you more paranoid than need be....
First treatment today....so far feel good. But it's only been 2 hours or so since home....the cytoxan was given at a slower pace this time which seemed to stop the burning in my nostrils that I had 12 years ago...along with the horrible chemical smells...but we are in the early hours after IV.....here's hoping against hope that somehow I stay well...just tired would be fine ; )
Neulasta injection tomorrow. I told them...thanks to my ladies on here, about Claritin's magical fix for the bone pain...they seemed to be half aware of it...and said go ahead and try it!
more later.
d
-
For some reason I am not getting the email notification when new posts come up here, very annoying. So sorry to be a little behinfd!
Dorrie hope you are feeling ok, let us know how you are doing. I go for tx #3 this Wednesday.
Cat - the first time I found it myself - but it was hard to miss seeing as how it was 10cm! This time it was found during my annual mammo - except it was not seen on the mammo but on the ultrasound that my onc decided to order. It was my five year mark and he wanted to be thorough - so glad he's great at his job! I could not feel it and neither could he on my clinical exams.
-
Sorry that was dreaming who asked the question about tests, not Cat.....
Cat - we started travelling a lot after my diagnosis in 2006 - we've been on 4 cruises since 2007, Alaska, The Med, the Baltics and the Carribean. All wonderful trips with time spent in London, Rome and Paris pre cruise. We are officially cruise-a-holics!! Doing another Med cruise out of Venice next year. I want to go back to Santorini, soooo gorgeous there! And I am so looking forward to Venice as well.....
-
Hi Relda,
Got through tx #1 yesterday. So far have been feeling good. Though, just a little iffy right about now.
Had my neulasta shot today. Aloxi and Steroids will be worn off tomorrow. So may feel a bit less peppy tomorrow...we'll see.
I love that you did all that traveling...good call! Venice...nice!
Will update you.
Dorrie
-
I found both cancers myself. Mammograms done faithfully for 30 years, but they all missed them both.
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