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Topic: If you could go back, what would you tell yourself?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jul 15, 2017 03:01AM

Marissa0258 wrote:

I am just at the beginning of my battle, and I was wondering if you could go back in time, before you were diagnosed, and told yourself one thing, what would it be? I need help.

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Jul 15, 2017 05:05AM Kicks wrote:

I'm not sure what you mean or are asking.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jul 15, 2017 06:14AM carmstr835 wrote:

I know what I would do differently. First, I would refuse the needle core biopsy for an incisional and I would premedicate any surgery with ketorolac. I would keep looking for a surgeon that would accommodate my wishes. I am sure my needle cores spread my cancer to my lymph nodes. I would also fast for all my chemos, I didn't know about fasting for my 1st chemo, so I missed that one, but have fasted 5 days before each chemo, this will be my 4th chemo this coming week. Also, more exercise. Everyday.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/28/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Radiation Therapy 9/17/2017 Breast, Lymph nodes, Chest wall
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Jul 15, 2017 06:22AM Lula73 wrote:

Breathe, positive forward thinking is important to staying on track and giving you back some feeling of control over this,take it 1 day at a time/1 decision at a time, make a list of what steps you need to take/what decisions need to be made, look at all options of surgery with and without recon (including natural tissue recon vs implants if mastectomy is your choice), listen to your gut instincts and push your healthcare team if/when needed, remember at all times you did nothing to cause this - nothing you could do would've prevented it, and take time out of BC to be yourself and do the fun things you enjoy doing (hanging out with friends, movies, vacation, etc)-your mind and body need the downtime. Hope this helps!

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/4/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 15, 2017 08:50AM Momine wrote:

Breathe and xanax. I had never even taken a sleeping pill, but a friend (who had been through it) told me to ask the doc for xanax. I only used it occasionally, but it helped put a stop to useless spirals of anxiety.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jul 15, 2017 10:16AM bluepearl wrote:

Consider, seriously, a second opinion about options. I wouldn't have gone for a mastectomy with lymph node removal but would have opted for the sentinel node and avoided the year and a half of pain that went with 7 nodes removed. I would have insisted upon the Oncotype test which I was told "wasn't needed". I had the surgical biopsy the first time and would have preferred it the second time. If two labs give out different results, get a third and go with that, especially if it is an approval cancer specialty lab. Any pain..get it treated. Don't let them bully you. AND TRY NOT TO DO THIS ALONE. You need a soft place to fall, especially into someone's arms. You need to be taken care of. I hope you go through this journey with the least amount of anxiety and pain and the results mean you are cancer free!!!! (((HUGS)))

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Jul 15, 2017 11:43AM ChiSandy wrote:

I would have not thrown myself a “pity party” by ditching my low-carb diet in the weeks between diagnostic imaging and diagnosis. I would have listened to my MO’s admonition to avoid gaining more weight and asked her why—because I later found out how hard it is not to gain on an AI, how much harder it is to lose any weight, that fat cells secrete hormones that can become estrogen, and that the only way to lose the fat cells themselves is to have a surgeon remove them; and that obesity dramatically raises the risk of lymphedema (which I developed early on). I would have gone straight home or shopped for some non-food treat after each rads session instead of stopping in at my favorite pie cafe. I would have joined a gym two years sooner. And I wouldn’t have let fear take over my life as I waited for first Oncotype and then genetic test results. I wouldn’t have waited until my axillary seroma burst to join BCO.

Otherwise, I wouldn’t have done anything differently.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Jul 15, 2017 11:58AM - edited Jul 15, 2017 11:58AM by Artista928

I'm with Sandy. I didn't learn about the fat cells stuff until after txs. I'm almost 30 lbs heavier than when I started, and I was obese to begin with. Some of it is probably meds, certainly diet, Having had difficulty at times walking on my shot knees pre-cancer I should have known to really watch it. My problem is I'm alone and bored most of the time so food, my fav thing in the world, is my crutch. This eat whatever you can get down during chemo wasn't good advice for me because whatever I did eat was crap.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 15, 2017 02:12PM cive wrote:

I would have changed my doctors, both the surgeon and MO.  I ended up having no faith in either of them, but just did what they said.  To my regret.

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Jul 15, 2017 03:29PM MinusTwo wrote:

Marissa - please go to My Profile and post your diagnosis and what treatment has been recommended to date. You will have to make it "public" so we can see what you are dealing with.

I would have taken more trips in the years before diagnosis. But since I don't think you're asking that, I probably wouldn't have done much differently. I had second opinions with all docs & was basically pleased with their care.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 15, 2017 04:36PM Dianarose wrote:

Would have done a complete mastectomy when I was first diagnosed until waiting for it to return 😢

6/10/13 mets to ovary now. Now mets. To peritoneal stage IV Dx 3/22/2012, ILC, Both breasts, 1cm, Stage IV, metastasized to bone/other, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/31/2012 CMF Radiation Therapy 12/3/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/10/2013 Aromasin (exemestane)
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Jul 15, 2017 04:44PM liddybug wrote:

I am waiting to see if I have bc and these are all wonderful ideas to keep in mind. I hope your journey goes smoothly.

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Jul 15, 2017 05:48PM - edited Jul 16, 2017 04:22AM by farmerlucy

I would have known to ask for anti-anxiety meds. I would have been more aware of messing around/stopping antidepressants cold turkey. I would have asked for the full report of any testing I had.

I really needed to get a grip back then. Instead I was a complete noodle. But you know what? That was the best I could do at the time. YOU, too, are doing the best you can. It needs to be all about you for a while. Be selfish.

Hugs to all recently diagnosed. It does get better but it takes time. How much time? As long as it takes. (That was what my Stephen Minister would tell me at our weekly meeting.) Nerdy

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jul 15, 2017 06:45PM Meow13 wrote:

Keeping talking with those you know that have gone through BC, they are the ones that can help. Also in the beginning take the anti anxiety drugs. Don't worry about short term use.

Remember everyone is different and don't put to much emphasis on statistics.

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Jul 16, 2017 05:09AM rdeesides wrote:

carmstr835 - do you notice a big difference in SE's with the fasting? Just curious. Assuming you must or you wouldn't have wished you had done it the first round.


Dx 6/24/2017, IDC: Medullary, Right, 2cm, Grade 3, ER-/PR-, HER2-
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Jul 16, 2017 09:38AM Kicks wrote:

Operative words in the OP - before diagnosed.

There is nothing I could say to 'me/myself/I' before DX . I don't think there is anything post DX that I would say to 'me' that I should have done different.

There is also nothing today that I could say to the 'me' of 8 yrs ago that would be any different than what I did.

LIVE every second possible - never come up with 'what ever' as they don't exist.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jul 16, 2017 10:32AM voraciousreader wrote:

kicks..."before" being diagnosed is how I, too, perceived the question. I think everything I did in my life, up until and when I was diagnosed, prepared me for this journey and other paths i have takenthrough life. The only thing I think i would have done differently was...I would have told all the whiners that I met, "For goodness sake, get a f*~kin' life and shut the h^ll up." Heart

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 16, 2017 11:16AM carmstr835 wrote:

rdeesides, Yes, It was like night and day when I was on TC chemo. I did it more for the advantages in treating the cancer, Dr. Longo of California did a study of mice with breast cancer. 1/2 were fed, the other half were given only water for 2 days. Then given 1 dose of chemo. The 1/2 that were fed were all dead in 180 days. The 1/2 that fasted were all alive and cancer free at 300 days. He said, to transfer this to humans we need to fast for 5 days before rather than 2. There is a fast-like diet that he has developed, you can google it if you want to try it but can't handle the fasting. I find it easier to eat nothing than to limit my food. I also can afford to lose a few lbs, but I have so far gained it all back before the next fast.

Now that I am on TCHP however, the side effects are much worse and not sure it is helping the side effects. I was right in bed the 3rd day after and didn't feel like myself for about a week. However I was able to function reasonably well after the 4th day post chemo. I go for more chemo again on Tuesday, so I will let you know. My last chemo wasn't my best experience. It was very long 9 1/2 hours and the nurse was not very attentive so I did not drink the water or eat ice as I usually do. I will make sure I drink more this time and it should only be 6 hours.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/28/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Radiation Therapy 9/17/2017 Breast, Lymph nodes, Chest wall
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Jul 16, 2017 11:42AM - edited Jul 16, 2017 11:43AM by voraciousreader

this song might help give you strength to get through...I listen to it often...perhaps not as often as I should, just remember that once you get through "it"... you may look back at this being not a sweet moment in your life, but a bittersweet moment because it will change you as it has changed so many of us who has taken this path before you....i guess it builds strength and character in each of us that we never even knew we had...




Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 16, 2017 11:45AM voraciousreader wrote:

if you habe the youtube app...just click the arrow twice..

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Jul 16, 2017 12:11PM Michelle_in_cornland wrote:

I have always lived my life with purpose and would not have done anything different. I chose the best doctors, the best treatment path, the best medicine. With laser focus, determination and grit, I sought out opinions from others that had gone through a bc diagnosis and learned from them. Strong willed and determined, I went through a hysterectomy/oopherectomy (my choice) and am doing terrific. Having a positive outlook on life and a no regrets attitude, I can face whatever comes my way.

One of the best things that you can do for yourself is to have a plan, for everything.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Jul 16, 2017 01:01PM secondchancetoo wrote:

I would have done a bilateral mastectomy the first time out.....as my breast surgeon suggested. Instead, I kept my remaining breast feeling confident it would not return...only to have it return as a more aggressive type and grade in my contra-lateral breast

Dx 12/13/2011, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/2/2012 Mastectomy: Left Surgery 4/16/2016 Mastectomy: Right Dx 4/20/2016, IDC, Right, 1cm, Stage IB, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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Jul 16, 2017 02:20PM edwards750 wrote:

Agree with Michelle. I wouldn't have done anything different either.

Diane

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Jul 16, 2017 04:01PM JKL2017 wrote:

Marissa0258, I don't think I would have done anything differently before dx (maybe a few more Marguerita Mondays but those will come after I'm done with Anastrozole & can afford the calories!) but there are definitely some things I wish I'd done immediately after I learned I had BC:

Get a referral to an LEPT before you have surgery. Even if you only see the therapist once, get measured, get an exercise program to follow after surgery & get as much information as you can about how to avoid lymphedema. You may still get LE, but at least you'll know you did everything you could to avoid it.

In addition, go to the gym & strengthen your upper body before surgery - it can't hurt & it's a great stress reliever!

Last but not least (echoing the advice of others), be good to yourself & find people who will support you during this difficult time. Do what works for you - whether it's medication, meditation, prayer, therapy, support groups or something else. And don't be afraid to ask for help when you need it.

Don't be afraid to ask questions - you are your best advocate! Know that you're stronger than you think & that there are giving individuals on this Board who will be available to provide almost anything you will need.

Keeping you in my prayers - JKL

Dx 2/2/2017, ILC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/7/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 3/19/2017 Multi-catheter: Breast Hormonal Therapy 5/23/2017 Arimidex (anastrozole)
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Jul 16, 2017 04:51PM JudyGG wrote:

All of the responses you have received seem to be valid and indicate how individual this journey is.  I was diagnosed a year ago and ended up with a double mastectomy.  Don't have regrets because believe it was indicated but certainly understand your question.  The fact you are on the forum means you want info - find doctors who give you answers, then research, but at some point you just have to pick a path and travel it. The main thing I have found is that when I'm OK, I'm still NOT ok and battling anxiety and fatigue (both hard to quantify when I'm used to "getting over it and on with it"). The newest wrinkle for me was when I asked my oncologist what my re-occurrence rate is with and without arimidex and she told me she didn't know because my bi-lateral diagnosis put me in too small a group!

Expect things to keep coming at you, deal with what you can, find a support system-

Sorry you are starting this path but hope our thoughts help give you strength

JudyGG
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Jul 20, 2017 04:00PM msphil wrote:

hello sweetie I wouldn't do anything different not only am I now a 23yr Survivor Praise God but I went thru this not by accident I see now But so I can Inspire those just going thru that it is possible with Faith plenty Hope and Positive thinking.msphil idc stage2 0\3 nodes 3 months chemo before n after Lmastectomy 7wks radiation 5days wk tamoxifen 5yrs all while making wedding plans. Now married between chemo n rad No I wouldn't do anything different along this journey I have had the privilege to help Inspire Many here.

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Jul 21, 2017 05:05PM pinkvictory wrote:

msphil, your story , being a 23 yr warrior IS very inspiring. Thank you for your post


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