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Topic: Pre-existing mental illness now w/cancer

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Sep 10, 2010 02:47PM

bellapazza wrote:

I did not read through the endless pages here, I'm sorry.  But new.  I see there is a forum and I've favorited it re: anxiety, depression, PTSD as a result of cancer, but I have had severe anxiety and depression my whole life, and now breast cancer -- I am 51.  I also have a limited support system and a very poor marriage.  My family was seriously dysfunctional and abusive.  No one left either ... which in a sense is good.  I'm an only child as well.

I don't know how to deal with this.  I have a therapist, am on psychiatric meds.  I'm awaiting an Oncotype Dx which if low would spare me that horror, but I've also been told I will need 5 years of Tamoxifen.  Apparently the side effects of that are anxiety and depression which I have anyway!

I am on three psych meds which apparently don't need to be changed, but I cannot function without them.

Is there another forum that deals with this specifically?  I will continue to post in the other forum.  I am also considering a Blog to add to a website I have about my experience with mental illness.

Thank you all strong women out there!

What a journey we all must take!

Tamoxifen 9/26/10, Oncotype 10 Dx 7/13/2010, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Jan 23, 2018 09:12AM Faithonfire wrote:

an interesting follow up to that story...

My oncologist really is a good doctor in most aspects and very good at clinical results but totally lacking ANY empathy for the pain caused directly by treatments! The opoid crisis being declared a doctor's responsibility to avoid spooked many good doctors into promoting patient cruelty by shaming thinking reprimand from the government for treating it at ALL was worse than spiking mortality rates for the opposite reason!! It's an industry standard attitude that is harmful to condone in ANY healthcare environment!

So anyway, her husband is a great plastic surgeon and just started doing cancer reconstructions recently. I go see this clown, and he shows me his horror show of past work Frankenstein scars photos and wanted to do 2 back flap reconstructs after leaving me flat for a YEAR first!! It was because I was a smoker and radiation treatments would completely destroy my skin and implants if I didn't bow before this jerk and beg him to mutilate me too! My LIFE was more important than my vanity wanting to keep my breasts!! I was SHOCKED but not surprised he took it that far after I kept insisting my options were SO much better than the third rate salvage option he knows how to do and would NOT admit he wasn't QUALIFIED to do the procedures I just completed with a very well trained and innovative female surgeon!! She is one of the leaders in pioneering procedures like mine in the country and she is teaching others as fast as she learns this way so it is a real honor to be a part of! She saved me and can't wait to help change the way things are done!

Now guess who gets to stand before the state medical ethics review board too!! My doctor gets to tattle on the rude jerk! Nice reputation before too but I'm the WRONG woman to bully on what's worth surviving! I told him to go slam his genitals in a car door then wait a YEAR before replacing it with shabby needlepoint! He winced and I smiled as I walked away!

Some doctors are no better than used car salesman with their limited options for treatments and NO care what happens years later with scars or pain as long as they profit as much as possible! Now that it is being seen as a potential crime to DENY pain it is changing the industry standard that's been decades overdue. It's all about standing up for what you believe in and making reality better with the changes made for all involved

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 27, 2018 05:17PM Faithonfire wrote:

hi everyone!

sorry it took me so long to get back on but I have been so relieved I have slept almost the whole time since I got home from a very painful but good day of doctor visits! I started with getting my drains out and ability to shower back with my grafts but no more baths until after second surgery. I got my final reports on pathology and I was as close to total response as possible but wound up over 2/3 totality as my 5.5cm armpit tumor shrunk down to 8mm! The other 3 sentinel lymph nodes removed showed total clear in all 10 segments

I am still pouring over my own data to apply for a few studies and wrap my head around it all but I couldn’t be happier with the results! I am exhausted but happy my pain meds got increase needed to heal myself faster. The skin has shed for the first time on grafts and it is attaching so well I am excited to have the opportunity to feel like myself again one day!

I am happy with my scars and placement it is healing very well now so I can finally relax for a while.

Didn’t mean to take that long to get back on boards but it’s been quite a blur after that whole surgery and family drama that has led to my husband STILL not responding to me since surgery night!

I’m just getting used to my new shape and we can pick final size without any need to fill me first because I have plenty of room and didn’t loose as much skin as I guessed they would take! I will be a heavy c to d depends on what fits better to fill me back in so I will be very excited to go to Victoria’s Secret and get fitted again but I’m a light c now under filled to ease tension on scars straight across as they kick out glue and heal drain spots that are very painful!

I’ll post my full stats Oncotype and risks and all after I pry it away from mom who has been glued to phone with my sister getting her testing ready too so we will have more data! I hope she comes up clean and only I had to get it!

I’m going to rest up more and feel fantastic as my hair is coming back in super soft and eyelashes are back too yay it’s like they sprouted overnight

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 28, 2018 12:55AM jo6359 wrote:

Faith- hope you are able to find a medication combo which will stabilize you mentally and physically. Pain management can be frustrating. Due to strict guidelines on presciption painkillers , most doctors are reluctant to prescribe pain pills even when there is a legitimate reason. Best of luck to you with your healing. Having cancer and mental illness makes your journey more challenging. Hopefully, one day you will have an opportunity to

resume your relationship with your children. Best of luck to you and may you find peace.


Dx 1/29/2018, DCIS, Right, Stage 0 Dx 1/29/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/18 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 2/16/2018 Perjeta (pertuzumab) Targeted Therapy 2/16/2018 Herceptin (trastuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jan 28, 2018 03:20AM Faithonfire wrote:

Thanks FI,

I am doing pretty well with the meds now that we got it back to reasonable levels for post surgery and a nice step down program ready for me as I heal. I was fortunate to have palliative care office override any doctor treating me with my cancer diagnosis about all pain management so it really was empowering as a patient.

The doctors that claim to be “uncomfortable” prescribing appropriate levels of pain relief for the treatments they are all too happy to push on you that CAUSE the pain these drugs were created to TREAT find themselves dragged in front of the state medical ethics committee to explain their career audits and bedside manner that would make true psychopaths blush!

I have been the victim of enough misdiagnosis and mistreatment in my life that I went in to my chemotherapy like a warrior ready to die in battle before I would EVER allow anyone to patient shame me about my feelings or reporting drug side effects properly!

I had a ptsd specialist for weekly therapy who also happened to be an addiction specialist that lectures on ethics for the medical specialists teams and reports to the state issues like these that need to be resolved NOW because some patients just don’t have time to waste in agony until the standards are changed to suit the needs of the patient first over a doctors callous worries over liability! If a patient like me does not deserve a perscription then who DOES??!! That’s usually the LAST thing they want on record too so it’s all about using the proper argument to solve the REAL problem.

We settled on using vallium and morphine pills and it’s working SO much better than the newer classes of antidepressants I tried before there are almost no side effects other than sleeping a lot!

which is what one does after major surgery when not awakened to blinding pain every few hours for more meds! It gets counterproductive for patients and staff in the hospital so the system is now currently under review in most states thanks to dilligant patients willing to take the time to aid the process by being candid about their care.

I am working on getting school involved with our reunion and future relationships with my daughters but that will take time and a lot of patience. My husband is in for quite a rude awakening the day he is informed that ignoring me does NOT eliminate his obligations to me or allow him to violate my disabled parental rights anymore simply because I am not strong enough to stop him myself! I will tell you all more after he is dragged out and held accountable for the lies he had told so far

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 9, 2018 07:57PM Faithonfire wrote:

I just thought I would give an update on how I am coping with it all.

Honestly I am feeling SO much better after a quick surgery yesterday to remove a little bit of necrosis on outer edges of scars from my reaction to the glue used. It’s not exactly tissue death as failure to thrive because the back side of tissue was connected and healed completely so after trimming up edges that did not seal as well I feel a lot better than I did!

I have not heard a word from my husband for over a month straight now and I don’t expect to anymore. My lawyer is calling me back on how to start enforcing my rights soon so it’s not like I WANT to get a divorce there are just no other legal options for me to force him to honor his debts for my treatments or his word to me in ANY way! Pretending I don’t exist anymore does NOT make me or my rights simply disappear in this country! I can’t wait to see him deny what he has done in court because the damage it has done to me has all been documented and verified.

I’m starting a new branch of treatment called abandonment therapy with my therapist and workbook structure so a tad remedial but hard subject to face so it will become what it was meant to be in my transformation . Painful process but worth the work if done right and real change occurs like it has for me so far!

Wish me luck and know I keep hoping for the best for you all too! I will let you know how the new therapy goes and third surgery to finish placements with final implants and grafts should be in a few months.

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 18, 2018 06:23PM jaymeb wrote:

Faith

I just responding to you on the other thread. Please read, and respond on that one.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 19, 2018 05:36PM jaymeb wrote:

Faith

Where are you?
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 20, 2018 02:12AM Faithonfire wrote:

hi jaymeb,

I’m ok and hanging in there since my second surgery to trim some necrosis and heal me up so I am only 2 weeks out of that hospital stay and feeling a lot better after being out of it for that long. The meds really knocked me out for a while until they got infected tissue cleared. Grafts look better and I can still keep them for now but it’s touch and go each week they check.

Hope you are doing better with your recovery too I keep you and your loved ones in my prayers and am getting better one day at s time.

My sister and husband cane out for a visit yesterday and were kind enough to stay in s hotel for the few days to make sure not to get me sick. I was surprised but so pleased she is going out of her way for me this much, not talking to my kids has been very hard on all of us so she and my mom are going to get to talk a while and find a fair solution for all involved.

Wish me luck and I will catch up with you soon as this craziness calms down s little more but I refused to do radiation and it’s official! Ya

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 3, 2018 10:02PM jaymeb wrote:

Hi Faith

I'm recuperating from my exchange surgery. Not as bad as the mascectomy, but in pain. My right breast was cut to take out some tissue, and lifted. Some of the areola was taken off. This was done for symmetry. But reconstruction is important to me. Gotta wait four more months for nipple reconstruction. 😬😬😬😬. Hope all this is worth it.

Just really checking to see how you're doing? What's going on with you? When you're up to it, let me know.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 4, 2018 06:31AM Faithonfire wrote:

Hi

I’m glad to hear you got to keep most of your Areola that’s great and I’m sure you will look fantastic when they fix you up for good in a few months!!

We all know by now I’m not so lucky but I’ll get to that later...

So as much of a hassle as it is waiting to properly heal is so crucial to best results you just have to keep telling yourself scar tissue is actually stronger than normal skin and takes longer to grow I’ve found. Mederna is top notch for results on face and breast scars but expensive so other options like palmers skin repair oil is great too and more for stretch marks and later red reduction. I always had great luck with it and swear that and mineral oil allowed me to top out at 240 carrying my son now 13 to 95 last June when diagnosed! I hardly have enough skin to work with now but no floppy extra skin anywhere and triple strong hide with some seriously badass white flame pattern stretch marks look like tattoos almost it’s funny to me still!

Finally had enough hair to put it back to blonde than my bizzare white stripes and dark patches making me look much older and sicker so it’s a small comfort to start ditching hats on my way out in public one day at a time.

I was hoping to see my kids for Easter or spring break but they have all blocked my number and I’ve had no contact as soon as he hung up on me after my first surgery in the hospital over a conversation I can’t even remember!! That is his version of being there for me...and every burse that watched me cry myself to sleep that night is still hoping to hear about the day his luck runs out and he gets what he deserves for putting me through that after a 9 hr surgery recovery if not to hope to cause fatal complications without laying a finger on me to get away with it!!!

Have only had one or two calls or texts since ALL ending immediately whenever I ask for any information about any subject from our house,kids to arranging for me to see them even if he does not want to see me and divorce me forcing me to loose my health insurance with a diagnosis like mine on top of violating my parental rights and brag about it!

It’s almost more than I can bear each day knowing mother’s day for the first time in my life will only be spent in agony because of my loving honorable husband and kids mocking me for being too weak to stop them and denying me any mercy or hope and I don’t know how I am going to handle that this year all alone right after chemo and reconstruction for stage 3 breast cancer that I’m still not healed from enough to take a bath still!! One side keeps getting about 2 inch fail to seal scab over temp implant fill plate pushing directly on that spot hard like flat gold ball with sharp edges but it MUST be my fault for being a smoker and not the design flaw of a shitty product causing patient harm to just one side of double mastectomy... the one with no lymph damage like other side that looks just fine!

The failure to thrive response is systemic and directly related to my husbands emotional tactics so strategic in timing that I never stood a chance from the day they threw me out and then said I abandoned them and was a liar for saying I have cancer!!

My nipple grafts are still not closed yet but still scab stage in middle only showing minimal necrosis in middle but lost higher part if rest can be saved to replace from c scar bank it’s seaked well to it will be flat parts with small reconstruction fill in middle for lost depth like armpit divot from 3 sentynl lymph’s taken but my nerves all still work and feel different than any other skin I’ve got left!

I survive now just to get these hideous rocks out or at lest filled to proper size to give my scars a fair chance to heal feee of pressure points and stop hurting this much every day! I just want to be whole again and am having a harder time than anyone thought now that ignoring me is such a popular trend I have lost my will to fight it and pray for strength and healing to hold my husband accountable for choosing to behave this way without any bad results in HIS reality! I’m shocked it’s tsken this long truth be told!

I just hope I get to hear from my kids soon even if it’s just more cursing and false accusations I can hear them and know they are alive and well relatively speaking anyway. I really expected our high school to be more helpful but not until I show them my face when I can get back there and gather the guts to do it again in person hoping not to be too humiliated to cry in public like that.

So sorry but I’m hanging by a thread these days hoping for a miracle and one pain free day


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 4, 2018 07:49PM Faithonfire wrote:

hi Jaymeb!

Perking up a bit today and love my new look so I will share a funny mystery later that STILL puzzles me!

Anyway...as I stumbled on some uk based research on cosmetic surgery and reconstructions of bad work done previously by some of their top surgeons teaching new ones for free called the ugly face of beauty in Netflix and I have to warn you it’s a bit more extreme than I am used to on a graphic level but very real and I learned a lot more that helped me understand better than the 3 interviews it took to find my own doctor who is a pioneer in the field of cancer reconstructions that I agreed to help try new options out on me and follow up for years after.

but it was very useful for me in several ways about how the cosmetic surgery industry is SO different than anything I’ve ever dealt with medically that I was only a reconstruction based patient each time so choices and options I get to make are a completely new idea to me.

I had no idea what was possible let alone what to ask about those options so I’m still learning as I go but am SO happy I chose her even if we aren’t friendly all the time about things, we share the same goals and a healthy mutual understanding of our commitment to see it through with the best results possible together. I could not ask for more comfort than that from any team of doctors I work with and I’m very blessed to have received such good care so far.

I’m up 3 more lbs since last weigh in so protein boosters are working well as I stuff myself with chocolates!!

I learned enough about silicone implants that I’m more open to considering them now thinking teardrop shape will look best but they are softer and less hazard than they used to be in a lot of ways so again obtaining accurate information will wind up making my decision on safety first this weeks visit to check my healing and I’m about 95% solid by now so I got a pet fish to celebrate!

I see fish in bowl when I leave and no other pets or people in house... come back a few hours later and it’s GONE without a trace and I stripped my entire room including moving desk bowl was ON but no body to return to store!!

Seriously my mom thinks it’s hilarious and my dads ghost stole my fish nd the sad fact is I got nothing to refute that and he was always a practical joker so only me right?!

How bad of a person do you have to be to make a pet fish run away? I would not care as much if the thing just died but that one was confirmed by other witnesses so at least I’m not nuts by myself and that’s one more thing I love about getting to spend time with my mom! She is right even when it makes no sense to the rest of the world!! Ha I need to learn that trick!!

Hope it makes you smile anyway,

Feel better and I’ll let you know what they do next when I get cleared to do more like take a bath grrr

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 6, 2018 04:46AM jaymeb wrote:

Hi Faith


You're hard to track down. It's been six weeks since my exchange surgery. The side where the implant was put in seems to be ok. I chose the teardrop silicone plant. For me I thought that one would look more natural, especially making it match to the reconstructed breast. I tell you with the unilateral mascectomy, expanders that felt like a rock which had to stay in six months after radiation. So, in a nutshell, it was almost a year when I finally got my exchange. My poor boobs have been through a lot. I told my friend I feel like I've been butchered.🤣🤣🤣🤣🤣


Faith, how was Easter for you? Did you get to see, or talk to your kids? What's going on with the husband? Do you think it will work( I would love to hear if you two could work slowly and rebuild). Or does it look like you two might divorce? You definitely need toxic people out of your life. I definitely won't let dramatic and toxic people in my life. And Faith, neither do you. We have gone through a serious illness, life will never be the same. I've learned not to let things get to me as much. I count my lucky stars I'm still here with the support of my daughter, mom, brother, and ex-husband. Believe me thought, I have my depressed days. Not easy.


Did I read right, you weighed 240lbs , then dropped to 95 lbs. Wow. Are you underweight? Wish I was that small. I HAVE GOT to get 30 pounds off. Never struggled with weight issues until I had to start taking all kinds of meds.😥😥😥. What is the ugly face of beautiful? I have Netflix. Tell me a little more about it. Also, the fish? What in the world?


Oh, I did choose the teardrop implant. On me, it looks more natural, and matches my other breast well. I just hate the scars. I still have numbness on mascectomy side. God, what we go through. Uggggh.

Faith, I get so confused. Damn tamoxifen. Have you done your implants, or getting them soon? I keep forgetting you didn't do radiation. Lucky you. Radiation is why I had to wait forever for plastic surgery. Oh, and have to wait three months for a nipple tattoo. Stupid me thought I would go back into surgery, but no, it sounds like I will be going to a tattoo artist who does these 3D nipples. Siggghh🙄🙄. Please respond to me soon. Want to hear how you're doing, and what's going on with the kids.

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 6, 2018 10:26PM Faithonfire wrote:

hi jaymeb,

I know I’ve been holed up in my room sulking because I have been having a real rough time of it lately, on all levels really but I’ll start with the physical and get to my family later.

a month or so after my first surgery to get cancer out with double skin saving mastectomy plus nipple grafts of cleared organ structures to my c section scars and my pet rocks in my chest that my doc for reconstruction left underfilled enough to need fake sillicone implants to keep them from doing horrific tricks like flipping completely around while I sleep in a sports bra!! So that nasty fill plate feels like a granade scraping across my rib cage directly

but I have enough skin left in pocket to flip it back around myself without any further damage to scars that go straight across middle but not underneath and up around nipple called a j scar.

Also lost about 10% mass of saline volume on left side with lymph damage but no rupture or seam leaking my body just absorbed it!! The failure to heal response was in other breast mostly healthy but damn fill plate is exact size and pressure on scar problem CAUSING that one spot and nowhere else to react that way!! Still have bruise about quarter size from my power port too but cannot see surgery scar they put it in with at all, my port came out January 6!!

And yup my weight has been totally insane since I weighed in while pregnant with my son at 240 and 210 when they let us out finally he was just under 8 lbs with a 12 inch head- my first daughter beat his noggin with 13 1/2 inch head and we were only 185 together and she was 8.5 lbs and broken collar bone on her way out she was green due to traumatic birth they made me do other 2 c sections after that because one more time would have been fatal and almost was for 2 out of 3 so I didn’t drop all my weight until after the birth of my last one and only to not be able to breast feed which is most likely reason it was so advanced and aggressive ductile invasive braca 2 mutated breast cancer!

So long story short I refused mesh metal patch of ANY kind being used on me for repairs back before they admitted it was such a BAD idea it caused more death and damage than it was meant to treat! Too bad for ME it was before they discovered a new organ in the body in between intestines and abdominal walls don’t know the name of it so they screwed up that part that regulates weight gain but kept us both alive so I can’t blame them for doing the best they could with the pile of unbelievable I dropped in their laps at the time!

I give my east coast team of doctors all the credit they deserve for keeping us alive against their odds but keeping a thumb on the scales in the name of plausible deniability has finally gone out the window for good now that my medical records and history are documented for trial studies I am now a part of.

I’ve been compiling a LOT of my story in journal form for my kids one day but unfortunately we are still not communicating at ALL anymore about a week before any school break making planning a visit impossible since I cannot travel and they all CLEARLY do NOT want to see or spend any time with me yet. I know divorced parents living out of state that know more about their kids lives than the months of hell I have been put through!

It’s not that I want a divorce as much as I desire vindication and having my rights upheld without having to fight for my most basic needs to be met!

Exploiting my diagnosis and symptoms for personal gain or pure spite is a crime and once I report it what happens to him is no longer up to me! He has every chance in the WORLD to respond and this was how he’s chosen to spend that time and money as his legal wife and mother of his kids was going through stage 3c breast cancer?!!

He’s SUCH a disgrace of a man now he is about to learn the difference between lying to your dying wife and lying in family court is a crime you don’t always walk away from!

I have done all I can so it’s up to him to speak up or be hauled before someone who will explain the difference between a legal wife and a girlfriend or baby mama you owe more than his ass can come up with when it’s his freedom that becomes forfeit for mistaking the title of wife for domestic slave!!

In short all his strategic silence is something he can no longer afford and the longer it goes on the more of his background gets reviewed in a different light!! I still love him but that means I will hold him to his words in front of people who will see my rights honored and upheld because I have earned that even if he cannot face me without being forced to by law!

I will get out in time to inform family court of my situation and switch my after care teams so I can figure out how to reconnect with my kids and get social security disability until I get my back pay as promised in court. A woman cannot survive in broken promises alone and court agrees with that after seeing what he has done it’s my kids futures I worry about most now.

So I’m feeling mutilated needlessly rather than a more fair consideration to my severe ptsd symptoms making this worse than ever and angry this is taking WAY longer than it should to milk the insurance more than I am willing to keep quiet about too once I am done and safe from reprisals of any kind for being right and able to prove it if I am forced to.

I had a 95% clear rate with chemo before surgery and all nodes taken showed complete response so missing their recommended 98% clear or better to avoid radiation being the industry standard response as clinical study is being done NOW to refute that steaming pile of NOT ME without the stress of guessing if you got fried or not in a double blind trial. I’d rather them watch and follow along as usual because the risk is NOT currently worth the unproven lifetime risk reduction vs direct damage to my new reconstruction so NO radiation for me thanks and I’ll keep my healthy organs too until they HAVE to be removed I need more than an expensive and outdated harmful guess!

I’m going with teardrop silicone also simply because my body cannot swipe any of it like the saline and my nipple grafts can be padded with my own fat to reconstruct depth on my own nipples that I lost so they will be a little smaller but still all me and no tattoos but microlazer scar removal If needed after 6 month final checkup then it’s just monitoring yearly for trials with oncology.

Glad to hear from you I’ve missed all you guys but I’ve been too frustrated with my very fussy plastic surgeon and too sad to talk about it all as I am getting so sick of not being DONE with my implants HURTING this much every damn day if they never intended to fill them up UNLESS I do radiation then they must overfill for up to 20% mass loss not to mention necrosis or failure and removal.... so NO WAY!!! I’ll take the tamoxafin pills for 5 years or until something better is finally allowed to be sold for pre menaoausal women.

When treatment improvements that are healthier for patients is LESS profit making than the current slash and fry options with every spinoff service that would go bankrupt if they simply were no longer a conmen side effect like GOING BALD and regrowing hair while still taking the same drug that made it fall out LIKE I JUST DID!!

It’s a problem of motivation and image of the entire field actually so I intend to BE that giant kick in the butt that will change how cancer became big profit but little advancement for the investment made by all the cheap marketing ploys by MY count so convict theft as FRAUD and it STOPS!

Once we change the culture of patient blaming and shaming it will be all too easy to convict those who openly profit most from lack of progress in the field!! More tax audits will create more American jobs and put our jails to MUCH better use than making patients criminals for believing their doctors lies for fear of liability!


Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 14, 2018 03:07AM Faithonfire wrote:

I guess I’m so grouchy lately that I scared everyone away, sorry about that.

I’ve been thinking a lot about my return home and getting a transfer team together is a full time job in itself! I am going back to the Stone Age of medicine state coordinated care team headquarters and getting in on a new fda approved trial drug by June 22.

Proclib study is being done in combination with 5 year tamoxafin 20 mg pill. It’s a 2 year monitored study based on your residency state but offered through my treatment state

After only 2 of 3 reconstruction needed surgeries complete I am not physically ready to tackle all these new challenges alone and am not sure how this reintroduction will go so I will be staying with my sister as I get settled in and everyone gets a good look at me and all the catching up will be hard for me personally as well as professionally

. I am still in medical leave limbo... unpaid of course for part time but still full dues taken for the privelage of working for minimum wage but not enough to qualify for benifits of any kind so I used my husbands teamsters insurance as always and never told my diagnosis to anyone at work before I had to leave so suddenly and I honestly am still at a loss for words for how I was treated so I think my union rep will help me settle up with them face to face when I get back.

I am going in to see my oncology team Monday for full trial briefing and transfer team review before I’m due back for final reconstruction surgery this summer so now both styles of follow up care will be fully documented in my study data for review upon completion.

I’m SURE I’ll see my plastic surgeon too since she’s on call there that day anyway so we can properly adjust my fill rate before I have to demonstrate my implant reversal as a reported side effect in video form for them despite the pain it will cause they NEED to understand what is going on inside my body NOW on left side due to massive underfilled temporary maxum saline implant in pocket large enough to flip inside my body like a rusty can lid and looks worse than my tumor masses right now after my own body snatched 10% saline out of left one only and never being filled since insertion despite my modest weight gain so once I get an in house second opinion it will validate my feelings on the issues to say the least!

She simply cannot send me back looking like this and was all too eager to overinflate a week ago only IF I agreed to radiation treatments and quit smoking completely immediately which was NOT in our contract when she agreed to work FOR me.

I decided against radiation treatments and am working on quitting smoking with ptsd so deadlines are BAD for me as well as holding me hostage by delaying or denying contracted work to be done for violating her personal morality clauses I NEVER agreed to in print or any occasion! She is paid to restore me as WE agreed in contract procedure and I’m holding her accountable for her decisions and basing them on passing too much responsibility to unqualified staff lacking HER credentials to make the decisions I pay HER for and not her snotty little underling lacking the degree or proper training to misrepresent my situation with her prejudice against my personality OR complete diagnosis!

I doubt sensitivity training will save a career like THAT because some women who like to borrow others career credentials as if they earned them themselves simply should NOT be permitted to work with vounerable reconstruction cancer patients EVER again!!!

Once I am completely forthcoming about her impact on my experiences with a great specialty department and left ME in a position to need a third party in the same room watching conduct at all times to avoid getting hurt again after trusting her to remove drain tubes incorrectly instead of qualified surgeon who inserted them under the watchful eye of my oncology surgeon!!

Like I said I have a LOT of people who want to see me so we better ALL be prepared to do our VERY BEST to fix problems as we find them before the cost of ignoring it results in total failure and rejection of a social ideology like a tumor that plagues the healthcare industry and should be rooted out quickly before damage done is irreversible to the reputation of anyone willing to gloss it over instead of make an example concrete enough to be effective in the field entirely.

I’m SURE I’ll be just fine once I am feeling a little better as I see everyone back home again for the first time... I can’t hide what I’ve been through so how I feel about how I look is the most critical component to calling any procedure a success when in such an experimental phase of reconstruction.

Wish me luck because in going to need it!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 14, 2018 01:02PM Roaming_Star wrote:

Hi - thought i would join this forum. I too had a very shitty childhood. I score 9/10 on the Adverse Childhood Experiences (ACE's) test (google this to find more info on the topic). I was finally diagnosed with major depression 10 years ago after suffering so bad with it. After reading about the link btw ACE's and depression, cancer and chronic suicide ideation (which i have had since i was a teenager) i suddenly feel like i have an answer to what has been going on inside me for so long. I understand now about the link btw ACE's and chronic inflammation. Chronic inflammation is the precursor to autoimmune disorders, heart problems, diabetes, cancer, depression, schizophrenia, alzheimers etc. I have lots of research on this if you are interested. Anyways now i am focussing on reducing stress, inflammation, and processing negative brain responses or body responses through things like journaling, art work, suppliments, exercise, talking to people about how shitty i feel inside and anything else that calms my body down. I am hoping that a calm body will begin to feel a norm? Not sure if this it possible with cancer and my history - it will probably be a life long (or short!) process.

Diagnosed at age 46. Taking low dose naltrexone as 30% of cancer patients have low endorphins impacting the body's immune system to kill cancer stem cells. Dx 5/24/2017, IDC, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 6/9/2017 AC + T (Taxol) Surgery 11/24/2017 Lymph node removal: Underarm/Axillary; Mastectomy Dx 12/6/2017, LCIS/IDC/IDC: Tubular, Left, 1cm, Stage IIIA, Grade 2, 6/16 nodes, ER+/PR+, HER2- Radiation Therapy 2/5/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 3/14/2018 Femara (letrozole)
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Apr 15, 2018 10:38AM bluepearl wrote:

Inflammatory processes can be alleviated by 1 to 2 Tablespoons of olive oil per day and increasing magnesium levels because higher amounts of stress severely deplete magnesium stores and result in decline in moods and increase of anxieties which then depletes magnesium more! Get one that says "absorbable" otherwise it won't do you any good. There are various kinds almost always better than magnesium oxide (unless it says absorbable). Epsom salts can be made into a magnesium body spray as well and you can even make magnesium water out of Milk of Magnesia...check out youtube on that. Exercise and losing weight also reduces inflammation. If you have abdominal fat, THAT acts like one big inflammatory organ and has to be reduced. I am on a low carb, high GOOD fat, moderate protein diet and when your brain starts utilizing fat for fuel rather than sugar, moods are elevated.So is a lot of stuff...lol. So sorry you are going through so much stress with so many things! I bought a CD on mindfulness too.....meditation is amazingly healing and mindfulness is one form of it.

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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Apr 16, 2018 07:23PM Roaming_Star wrote:

Thanks Bluepearl:-) i am doing a mediterranean diet now. I have been hearing a lot about magnesium and will look into it:-)

Take care,

Roaming

Diagnosed at age 46. Taking low dose naltrexone as 30% of cancer patients have low endorphins impacting the body's immune system to kill cancer stem cells. Dx 5/24/2017, IDC, Left, 2cm, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 6/9/2017 AC + T (Taxol) Surgery 11/24/2017 Lymph node removal: Underarm/Axillary; Mastectomy Dx 12/6/2017, LCIS/IDC/IDC: Tubular, Left, 1cm, Stage IIIA, Grade 2, 6/16 nodes, ER+/PR+, HER2- Radiation Therapy 2/5/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 3/14/2018 Femara (letrozole)
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Apr 17, 2018 01:25AM Faithonfire wrote:

hi and welcome blue pearl and roaming star!

I will give the magnesium angle a try since I have not thought of that before so I am looking forward to learning more about some of the ideas you mentioned in reverse actually

I am wasting bad enough to be on Marinol right now and fighting to gain more mass in the middle of the reconstruction phase to give my plastic surgeon more to work with before final implants are installed and nipples regrafted to mound and properly spaced and shaped with my own saved organs and breast tissue YAY!!!

That’s right around the corner too so best thing I found to work in addition to stuffing myself as often as possible is whole milk mixed with heavy cream put the pounds back faster and better than whey protein supplement powder or bars for me after finishing my chemo in January. Im 5’7” at 120 right now and need at least 20 more so I found staying hydrated to really help the first few days after my chemo infusions and still help without overloading my system.

Plastic silverware helped me not taste metal as much until I finished chemo too it sounds silly but helped me keep trying! I was down to 95 lbs when first starting chemo last June so they actually helped me gain weight at the same time!!!

Best of luck to both of you in your journey and it is a pleasure to meet you both!~ faith on fire

Ps. I just tried this old home remedy and it worked for 4 hrs solid to help mild arthritis in both hands and it’s one teasooon of apple cider vinegar and local honey in a 8 oz cup of any tea you like and I was surprised with how well my aunts old trick really worked well on me! Didn’t taste as gross as it sounds too ha!

Good luck and thanks for the new ideas!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Apr 17, 2018 01:41PM - edited Apr 17, 2018 01:43PM by bluepearl

Apple cider is good for a lot of things! My, you ARE slim! The Mediterranean diet is a PROVEN good diet and anti inflammatory. Stuff in the veggies! With slim Jim here, she can add the starchy ones too....pasta etc. and don't forget building muscle tissue....and added protein will also enable you to gain weight, one of the reasons the ketogenic diet is a moderate protein one. I have a cookbook on mediterainean diet...something called 365 days...nice recipes! I also make my own hot cereal......1 cup of sauted nuts/seeds ground up to make one cup, 11/2 c. wheat bran, 1/2 c. oat bran. throw in 1/4 chia seeds. two tsp. cinnamon (you can even throw in some dried fruit you like), 1Tbsp of protein powder vanilla (I usually throw in a scoop the protein powder with greens) and add sweetener of choice before or after you microwave it....putting 1/2 c in a bowl and mixing with (1/2 or more) milk you prefer. Keeping fibre and thus probiotics active is a HUGE benefit to your health!!! I love this cereal and will sometimes use it as a snack. I don't have constipation, gas, GERDs or anything else. Toasting your seeds and nuts first brings out the flavour......pumpkin seeds, almonds, pecans, anything you want. I only need to buy small quantities of expensive nuts as this cereal lasts a week or two in the fridge.

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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Apr 17, 2018 08:26PM - edited Apr 17, 2018 08:27PM by Mechq

This Post was deleted by Mechq.
Surgery: 4/13/18 Lumpectomy 5cm mass dx: PASH, Radial Scar, and Atypical Lobular Hyperplasia Surgery 4/11/2018 Lumpectomy: Left Dx Left
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Apr 25, 2018 06:58PM Faithonfire wrote:

Hi Bella

I owe a LOT to you and your courage inspiring me enough to share mine too because together we can do so many more things than any of us could imagine now!!

and I wish there WAS a new forum or two added for the new FDA trial study out of West Michigan and university of Pennsylvania medical oncology for the drug proclib and I just agreed to do that 2 year drug trial while taking 20mg of tamoxafin 5 to 10 years after my chemotherapy finished back in January and I decided to pass on the current radiation study being done at the Betty Ford breast center because I can’t be in two states at once!!

This is being done well as we transfer care back to my home state in time to qualify for the study as I settle out the reintroduction to my teenagers and husband who have shunned me since July claiming I had abandoned them for using the same team of doctors that cured my mother of the same diagnosis 3 years before!! Not all family reacts as we hope or expect to a severe diagnosis so it’s imoortant to reach out and embrace each other to stay strong and KNOW you don’t ever have to face any part of what this is making you feel alone EVER again ok?

I care and keep you in my prayers always just like all the other fine people who come and share with us here knowing they are always safe to so anytime!

That got me through some of my worst days so far and I never did take the time to thank you properly as I was raised to.

Good luck and feel free to get in touch if you need anything for info I check in May and will let you know which direction we go first!!

Wish me luck! Best of luck to everyone in having a better day than I did toda

Faithonfire

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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