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Topic: September 2019 surgery support group

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Aug 14, 2019 05:39AM

JenInMass wrote:

Hi all! I'm still pretty new here but I just got the call yesterday with my next surgery date and thought I'd go ahead and start a thread for September as I'm sure I'm not the only one who has or is expecting a September date at this point.

I am having a nipple-sparing mastectomy of my left breast plus tissue expander placement on 9/10. This will be my 3rd surgery this year. I had an excisional biopsy in June (after 2 failed attempts at a core needle biopsy), followed by re-excision and sentinel lymph node biopsy in July since the first surgery had DCIS in all margins in addition to the small mass they were going after that turned out to be IDC. The second surgery was good news on the lymph node front but still did not have clean margins, and there was a second slightly larger IDC mass that hadn't shown up on any of the imaging (multiple mammograms, ultrasound, and MRI). So, mastectomy it is.

Anyone else getting ready for a September surgery? I like that the August group has a list of everyone's surgery dates updated in the first post; I can do that here as well if people would like that.

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Oct 2, 2019 04:43AM HopeWins wrote:

cathy67 - so sorry for the bad news. For the number of nodes - when they use the tracer fluid and then inject the radioactive dye, they use a Geiger device in the OR to see where that dye is going when it leaves the breast. The first node, or set of nodes, are the sentinel node(s). Some women have only one (I did too) and some women have 3 or 4 or 5, etc. However many light up, the BS takes. The theory is, if the cancer cells are going to travel outside the breast that's where they'll go first. Theoretically, cancer cells have to go through the sentinel nodes to get anywhere else in the body, so if the SNB is negative, they assume lymphatic system is clear and bc is contained within the breast.

Since you had a positive SNB, they may want to go back for an axillary dissection (the nodes further up the line of drainage behind the SN). I'm sure you'll be having these convos with your team. Was your preliminary SNB negative? Again, so sorry about your news. You must be so disappointed.

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Oct 2, 2019 05:22AM G1973 wrote:

cathy67- I am there with you. I had my dissection this week and now we are on the waiting game. Thanks to all for helping me during my freak out time. Sometimes it just takes longer to process. Love to all

Dx 4/24/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, 5/13 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2019 AC + T (Taxol) Surgery 9/17/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 2, 2019 05:39AM cathy67 wrote:

HopeWins,

Thanks for the explanation.

I don't have SNB before the surgery, and doctor checked my armpit lymph nodes.

How about armpit lymph nodes dissection? My friend said, no much trouble for her. I am not sure, if dissection is a replacement to chemo.

I am thinking to be referred to another medical oncology, for second opinion.

Oncotype 6, Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2- Surgery 9/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 11/20/2019 Arimidex (anastrozole) Radiation Therapy 11/27/2019 Whole-breast: Breast, Lymph nodes
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Oct 2, 2019 05:41AM cathy67 wrote:

G1973,

Thanks! How is your dissection, is it terrible?

And how is your chemo ACT, how many doses?

I just wonder which one is better, if oncology put option for me. It seems, we patients must learn a lot, treatment is always option.

Oncotype 6, Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2- Surgery 9/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 11/20/2019 Arimidex (anastrozole) Radiation Therapy 11/27/2019 Whole-breast: Breast, Lymph nodes
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Oct 3, 2019 05:16AM ChaClarey wrote:

Hi cathy67,

Sorry to hear you disappointing news. I hope you get your options soon so you can move forward. Please keep us updated if you want to. Your words really made a difference to me when I was feeling very low.

Oncotype 16 Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 10/23/2019 Lymph node removal: Sentinel Radiation Therapy 12/14/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/23/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 3, 2019 06:42AM G1973 wrote:

Cathy 67- I won’t lie the chemo was brutal at some point. The AC really made me nauseous and tired. My horrible days were usually day 3 to 5. The Taxol really was not bad at all. I had some bone pain on days 3 to 5 but other than that the only other side effect was my nails aren’t looking so pretty. The chemo did shrink my tumor from almost 7 inches down to 2 inches overall. Definitely worth doing the chemo to shrink the tumor and also destroyed any free-floating cells. My lymph node also went from 1.5 cm to not noticeable on an MRI. That brings us to today after surgery my lymph node did test positive along with a sentinel node. Because those two out of three were positive I have the axillary node dissection.

My chemo was dose dense or 4AC and 4 taxol every other week. At this point my plan is to have my plastic surgeon continue with my expanders and then radiation afterwards. I’m sure I will also go on a oral chemo pill to clean up anything else. Still waiting for my pathology report from the dissection to confirm.


I’m sure I will also go on a oral chemo pill to clean up anything else. Still waiting for my pathology report from the dissection to confirm.


I hope this helps you guys, love to all❤️❤️

Dx 4/24/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, 5/13 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2019 AC + T (Taxol) Surgery 9/17/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 3, 2019 07:47AM cathy67 wrote:

G1973,

Thanks for the information, best wishes for your upcoming report.


Oncotype 6, Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2- Surgery 9/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 11/20/2019 Arimidex (anastrozole) Radiation Therapy 11/27/2019 Whole-breast: Breast, Lymph nodes
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Oct 3, 2019 11:34AM deweygirl19 wrote:

3 days post op today, feeling pretty good. Having pain but it’s not as bad as I thought it would be. I had oncoplastic lumpectomy, I look like I have Frankenstein boobs! Just in time for Halloween. It’s pretty brutal looking right now, hoping for nice healing. Get my drains out tomorrow, that will be something to celebrate! My surgeon called with good news, clear margins and negative lymph nodes! Now we are just going to wait for the Oncotype resul

Dx at 42 Dx 8/9/2019, IDC, Right, 1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2019 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 12/15/2019 Whole-breast: Breast Hormonal Therapy 1/31/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 3, 2019 05:12PM HopeWins wrote:

congrats dewygirl! Frankenboobs is the new black, lol! I'm right there with you!

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Oct 5, 2019 10:54AM - edited Oct 5, 2019 10:54AM by deweygirl19

does any one else have toddlers? I'm having such a hard time not being able to cuddle with my 2 year old daughter. Before surgery I was the one she always wanted and now she can't even sit in my lap without hurting me, she's just so active and wild. I miss putting her to bed, she doesn't even ask for me anymore and it's only been 5 days. This is so hard for me trying to balance being a mom and not popping my stitches.

Dx at 42 Dx 8/9/2019, IDC, Right, 1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 9/30/2019 Lumpectomy: Right; Reconstruction (left); Reconstruction (right) Radiation Therapy 12/15/2019 Whole-breast: Breast Hormonal Therapy 1/31/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 7, 2019 06:26AM G1973 wrote:

good morning everyone- I took this weekend off. We went trail riding on our UTV with friends. No cell service or internet, it was wonderful!

Friday my BS called with pathology and boy am I glad we did the dissection. I had 3 more nodes that tested positive. My official count is 5/13 but they are all out now! We are meeting today to take my last drain out and talk about PT/OT and lymphodema specialist.

Friday I had my first fill with my plastic surgeon. That was interesting, so wierd that I can not feel it but happy I cant😁

Love to you all

Dx 4/24/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, 5/13 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2019 AC + T (Taxol) Surgery 9/17/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 7, 2019 06:59AM cathy67 wrote:

G1973,

Hugs!! I am waiting for my appointment with oncologist. I also spent weekends with my daughter and friends, now Monday again, what news will this week bring me?? I am so scared of bone scan, surgeon did not order for me prior to surgery, cause my armpit lymph nodes are negative on ultrasound and clinical checkup, I hope I had already done it before surgery, at least I was not that scared at that time.

Wish you get some good news from your appointment today.


Oncotype 6, Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2- Surgery 9/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 11/20/2019 Arimidex (anastrozole) Radiation Therapy 11/27/2019 Whole-breast: Breast, Lymph nodes
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Oct 7, 2019 07:25AM curemom wrote:

Hello,

My Mom (69 years old) has IDC and was Dx in April 2019, she is triple positive, went through 5 rounds of TCHP and just had mastectomy 9/26. She's continuing on Herceptin until we think May 2020. We found out last week that her pathology report showed a positive sentinel node with 7mm cancer that her surgeon removed. I'm writing to see thoughts/advice on next steps. Her Surgeon told me when I continued to ask her if she felt there were any other nodes involved, "I got everything out I needed to get out and didn't see anything firm or suspicious in the axilla area" She said she was not going to go back in and do an ALND. I then spoke to my Mom's MO on Friday who also said that they no longer do ALND and was quit firm with this answer. They've both said the'll review her case at the next tumor board this month and that radiation is an option. She does have COPD (but thank goodness she quit smoking when she was Dx) so part of the reason she chose mastectomy vs lumpectomy was to hopefully avoid radiation with her lungs being compromised some. Now here she is with terrible news and radiation is back on the table. I've been helping advocate, research and guide my mom through this daunting, overwhelming and depressing process while trying to stay positive and strong for her. I don't like to worry her anymore than the worry she already has but have been researching and not sure if we should push her Doctors more, get another opinion or stick where we are. My Mom is my world and all I want is the best for her to beat this while not hurting her more in the process. I just wanted to reach out to you all amazingly strong and brave women to see if anyone has any advice.

Prayers, healing and strength to you all.

Thank you!

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Oct 7, 2019 07:48AM cathy67 wrote:

Hi curemom,

My surgeon removed one sentinel node, and it is positive with 3 mm deposit, under 2mm is considered as micro metastasis. And my understanding, sentinel node biopsy is to test whether sentinel nodes are positive or not, so only remove sentinel node, and every body has different numbers, 1 to 5. Right now, ALND is not standard procedure, for positive sentinel node case, radiotherapy is better than ALND. Of course, you may further discuss with doctor.

And, this is September surgery group, I think you'd better open a post with subject, then someone with similar experience will see this.

Oncotype 6, Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2- Surgery 9/10/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 11/20/2019 Arimidex (anastrozole) Radiation Therapy 11/27/2019 Whole-breast: Breast, Lymph nodes
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Oct 11, 2019 07:48AM - edited Oct 11, 2019 07:48AM by ChaClarey

Hello Septembers,

I had my follow up appt and pathology report.

Invasive ductal ca grade 2/3 2.1 cm pt2Nx

Er/prpositive from initial biopsy her 2 neu negative

Tumor size 21mmx x 16mmx 15mm, miotic score ; LVI present

They were not able to find lymph nodes in my specimen after sentinel node biopsy. The radioactive tissue only contained breast tissue, so I will have another surgery on October 23rd to harvest and test lymph nodes.

I don't know what this means regarding future treatments, but I guess I will have to wait (my new dirty four letter word)

I hope all you September surgeries are healing well.

Oncotype 16 Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 10/23/2019 Lymph node removal: Sentinel Radiation Therapy 12/14/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/23/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 11, 2019 02:04PM Lucy55 wrote:

Cha...so sorry you have to go back for more surgery to get the nodes . You're not wrong ..WAIT certainly is a dirty word ! It's all about "hurry up and then wait ".☹️


Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Oct 28, 2019 06:02PM purple-flower wrote:

Hey September ladies!

Just checking in to say hi!! How is everyone doing??

I'm still in tissue expander *hell* here - ok, I mean not totally bad, it's livable, but I'm generally sore and uncomfortable. I can sleep somewhat on my side, but not well and not comfortable. I've had an ongoing issue where fluid is building up in breast left side outside of tissue expander under the skin. PS not sure why but doesn't seem too concerned and keeps sucking it out. She said it seems like the alloderm on outer ridge of that side hasn't "taken" yet - I guess meaning w/scar tissue around it. The right side seems ok. . She said still time to heal - but that makes me worried as I really want all the next steps to go well and be done. I"m also filled a bit more than I would like so feels strange, not me, and sore so that's a bummer. I think I am going to ask for some saline to be taken out.

I do still wonder how I would feel if had the DIEP surgery. sigh. Not super excited about the implants to come. But that said, I'm up and about, working, drviving, etc. so that's good.

Anyway, just checking in to say hi and wish you well. It's really quite a scene here in California - a huge fire/smoke mess and it's very sad and scary. We still have power in my house, so we feel fortunate.

Purple flower

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Oct 29, 2019 06:04AM G1973 wrote:

hi purple-flower. Yes I am in expander hell and feel your pain. I go in Friday for another fill. He has been pretty aggressive with them so I can get in for radiation. I also started the lupron shot and letrozole combo. No side effects there.

Hope everyone is doing well

Dx 4/24/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, 5/13 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2019 AC + T (Taxol) Surgery 9/17/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 8, 2019 05:31PM Iknewit wrote:

Hello all,

Surgery was on September 30th, honestly it's been a blur. I still have alot of aching and swelling but the oncologist at my follow about 2 weeks ago said it was fine. I can't believe iam on the otherside. Some days I feel fine and some days and nights iam curled up and can't move.

I don't need anything further, the biopsy after the left MX showed no invasivenes, but the Oncologist did recommend going on Tamoxifen. For those on it, how has it been for you?

I hope everyone is doing well.


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Nov 9, 2019 05:25AM purple-flower wrote:

Hi iknewit

good news for you it sounds like. that's great. my surgery was Sept 11 so just coming up on 2 months out (mine was DMX). i feel really good all in all w most swelling and bruising gone. scheduled for implants on Dec 12. I had no lymph nodes or blood spread either and clear margins so I am now on tamoxifen. I was dreading it. So far (hasn't been that long) the only symptom is hot flashes which I get maybe 2-3 a night that wake me up and then I find it hard to go back to sleep. So I am up a lot at night. the sweaty part passes pretty quickly. I take my pill before bed so that's probably why, but I do that to not have hot flashes during the day w work and all. And at least right now since I am still healing I don't particularly sleep well anyway since can't stay on side much so flipping around a lot and on back. in the long term I probably need to get the sleep thing improved before it makes me (further) wacky in life being sleep deprived. I am currently trying to decide on moderate plus profile implants or high profile as I am relatively small framed and don't particularly want foobs too large. any advice on sleep, or those, or really anything... happy to hear. lying here 5am juat waiting a little longer before I give up and get out of bed. thinking I will start listening to podcasts or something maybe will help.

anyway good luck w all and thanks for keeping me company for a few quiet minutes here.

PF

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Nov 12, 2019 12:55AM Iknewit wrote:

Hi again Purple-flower,

Iam glad to hear that f overall you're doing okay. Iam too, as I said some days worst than others. I haven't decided on reconstruction yet, I feel i needed to give myself some time to heal and absorb, before I put my body through another trauma. I still have a few weeks to decide about Tamoxifen, but I can't seem to agree that I want to do it. Im having so many sleepless nights, but sleeping during the day, I feel exhausted. I did notice putting pillows around my arms and elevating my head improved sleep. Occasionally sleeping aids helped, and a warm bath or shower before sleep. Hope the sleep thing improves for you. Let me know if anyone has more insight into Tamoxifen use and aide effects they went through.

Night.



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Jan 12, 2020 09:05AM purple-flower wrote:

September ladies... how is everyone doing??? Thinking of you all and sending love and healing vibes. Happy Healthy New year everyone.

PF

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Jan 13, 2020 03:15PM G1973 wrote:

Hi purple! Healing is going well. All fills are done and they look pretty good😁. Still in rads and doing xeloda on the radiation days. How are you?.

Dx 4/24/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, 5/13 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2019 AC + T (Taxol) Surgery 9/17/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jan 14, 2020 09:38AM purple-flower wrote:

Hi there

So glad to hear you are moving along G1973!! And, fabulous that you're liking the look. :-)

All going ok here. I had my implant swap surgery on Dec 12th, so just about 4 weeks out from that. Foobs seem to be ok. They are not too big which I was fearing, so that's good for me, but definitely not feeling the same as natural. That is the way it is I guess.

All in all, foobs look fine and I feel good. So, at this point, it's just more healing and getting back into shape, etc.

I am on Tamoxifen also which I guess is ok. Been on it 4 months, and will have first appt w/oncologist in another 2 months I think. I REALLY hope it doesn't cause other issues like ovarian cancer, liver issues, etc. Sigh.

Happy new year!!

Jodi



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Jan 28, 2020 07:25PM LiveLoveLaugh2020 wrote:

Hello all. New to the site...I too had surgery in September (Bil NSM). Wondering how everyone is doing/feeling? Have you all had exchange already? Hope all is well.

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with fat grafting 01/2020
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Jan 29, 2020 10:31PM purple-flower wrote:

Hi there Livelovelaugh

How are you doing?? feeling ok? are you in treatment right now?

I had bilateral last Sept. and implant exchange in Dec. doing ok so far. had a good appt today and I get to sleep without a bra for the first time in 5 months tonight! So excited. (it's the little things...). I have been very blessed in that no chemo or radiation. jist tamoxifen now. feel happy and underling nervous for the road ahead. I am hoping to get life back on track... whatever that means in this altered reality.

I hope you are doing ok. Here for you to talk whenever needed.

PF

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Jan 30, 2020 06:20AM LiveLoveLaugh2020 wrote:

Hi purple,

I am doing okay thank you. I was fine the first two weeks and I was like wow this is great lol but starting to get pains and discomfort. How are you?

No, very fortunate that surgery was the only treatment. Glad to hear no chemo/rads for you. And yes the little things that make us happy lol I'm still in one 24/7, I don't feel comfortable without one.

I know what you mean, I'm both happy and nervous as well. This is such an emotional roller coaster ride!

Thanks for responding, I'm here for you and anyone else as well :)

DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with fat grafting 01/2020
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Feb 25, 2020 05:28AM JenInMass wrote:

Hi all! I haven't checked in in a while, I hope everyone is doing well. I had my exchange 4 weeks ago and am feeling almost normal in that respect, though both nervous and eager to get fully back to all physical activities (still 2 weeks of restrictions to go, with major cautions to gradually work back up to usual and not do anything super strenuous in the meantime...so my husband's still going to have to deal with snow shoveling if we get any big spring snowstorms). I'm not 100% done with reconstruction, though - my PS suggests both nipple reconstruction and fat grafting (my chest still has a caved in look above the implant on my mastectomy side). I am pretty sure I am not going to do the nipple, at least not any time soon (won't say never) but am planning on fat grafting as I'm pretty self-conscious about that.

My other treatment has just been tamoxifen. I started that in October but took a few weeks off for surgery; I see the NP at my oncologist's office next month to check on that. Side effects are manageable so far, and to be honest I don't know what's tamoxifen and what's surgery. My periods have been a mess...constant spotting and not really sure when my cycle is or isn't starting - but they were also screwed up after my first surgeries last summer, I imagine removing breast tissue can do a number on that. And I'm getting out of breath way more easily just with the normal activities I'm already doing, like walking up the two flights of stairs to my office. But that also could be because I'm just extra out of shape after the surgeries in September and January. I got a good walking routine in after the mastectomy but weather and work obligations have kept me pretty sedentary since the exchange.

I hope everyone is healing well!

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