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October 2020 surgery group

2

Comments

  • nyperr
    nyperr Member Posts: 3

    Hello to everyone in this group. I will have surgery this month...likely the 22nd but just waiting for final confirmation of the date. In 2001, I had a right breast lumpectomy, re-excision and sentinel node removal followed by radiation, chemo and tamoxifen. Now, after 19 years of good luck, I have 2 tumors in the left and one in the right. (It seems that I have breast cancer when we are facing a great crisis. Last time my chemo was postponed because the hospital wanted to have all doctors available for survivors when the towers fell on 9/11 and, now we're dealing with this horrific pandemic)

    I've been to 3 doctors at 3 different hospitals with 3 differing opinions and have finally decided on 3 lumpectomies with radiation on the left and IORT (intra-operative radiation) on the right previously radiated breast.

    I live alone and last time, just coincidentally, a friend was staying with me for a month - also I was 19 years younger. Any ideas of how long until I will feel able to make a meal for myself and other basic household tasks? Will I need someone to stay with me? Any other advice to prepare?

  • Lilir
    Lilir Member Posts: 38

    Wish u the best nyperr .... I would think yes... the more help u can get the better...

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    hi Nyperr— I cant speak for lumpectomy recovery, but I think it would be good to have some help available.You might find you don’t need anyone to come and check in, but I think it would give you some peace to know there’s someone nearby to call just in case. Be well!

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Hi all - I had my surgery yesterday afternoon (Left lumpectomy and sentinel node biopsy). The surgeon told my husband it went well...she ended up taking a bit more than expected to get clean margins though. My breast doesn't look smaller though, but my tumor was supposedly just 1cm (pre-surgery) I have about a 3 inch incision on my breast and a 2 inch one under my arm. She removed 3 lymph nodes and doesn't think there's anything in them. But I will have 100% clarification on all of it when i have my post-OP visit on 10/27.

    I have some mild discomfort, but nothing Tylenol and Motrin can't handle. I was able to do everything for myself, even last night, but then again I only had surgery on my left and my right arm works fine.

    I hope you ladies are all doing ok while recovering!! For those of you still waiting for you lumpectomy surgery, I'd be happy to offer any advice on what to expect in the hospital, as it's still fresh in my mind.

  • Lilir
    Lilir Member Posts: 38

    Yee pee!!

    Another one of us with the little invaders out!!!

    Congratulations....

  • juju-mar
    juju-mar Member Posts: 200

    congratulations! So glad all went well. Praying for good results from pathology

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Thank you!! It's honestly such a relief to have that out. I was a bit nervous, but so glad everything turned out well. I would say the worst parts were them doing the back of the hand IV (missed twice because my veins weren't popping out well since I hadn't had anything to drink for 15 hours or so) and the injection of the dye to identify the node(s) to take out (that burns like the fiery depths of hell, but only for maybe 10 seconds...also just remember this will make you urinate blue dye for awhile). I don't even remember getting into the OR, I think they knocked me out on the way to wheel me over there lol

  • juju-mar
    juju-mar Member Posts: 200

    How is everyone doing? I am 15 days post op and feel pretty normal. Had an MRI which showed some cancer cells left. Most likely will need a mastectomy after chemo. Having an EKG, bone scan and CT scan this week. If all goes well, port will be placed Monday 10/26 and chemo to begin 10/27. I interviewed a cleaning lady to come twice a month. I'm not sure what my energy level will be during chemo. Hope everyone is healing well!

    Julie

  • marie914
    marie914 Member Posts: 152

    Hello - how is everyone doing?

    Julie - good idea getting the cleaning lady. Do you know what kind of chemo? I am going to join the October chemo thread and then start a November chemo thread in a few days. I like to learn from others who have had chemo before me - even though every journey is different you can still pick up helpful hints.

    Mama2four - I found it easier to still be able to use my right hand too. Glad you are doing well.

    I will be working through my chemo as much as I can. I work from home mostly on my laptop and phone. This time of year November-January is pretty slow and more planning for 2021 so I should be good.

    I am 5 weeks post left mastectomy and expander tomorrow. I am going to have a port put in tomorrow. I will start chemo the week of November 2 - we think. I see the oncologist for my plan on Thursday 10/22.

    I saw the oncologist and my mammaprint came back high risk so she wants me to have 4 cycles of chemo TC taxotere and cytoxan. I saw the breast surgeon last week and I am healing great! She gave me a copy of the mammoprint and explained it. I am right on the border of high and low risk but a little bit more on the high risk side. Also if you just look at my tumor 2.3 cm, no lymph nodes, HER2- but ER/PR +, I'm still right on the border of needing chemo. Also the tumor marker in my blood is a little elevated. 44 and the range is up to 38. The PET scan came back good - no signs of the cancer spreading which doesn't mean any micro cancer particles are floating around - hence the preventive chemo.

    The BS said it was up to me what I decided. I am kind of preventive and I did all this with left mastectomy and expander I thought I might as well get the preventive chemo. So here I go. I am having the port put in tomorrow even though I don't start chemo for a few weeks since 10/24 we are going to the Florida Keys for a week of vacation. Just my husband and I - just relaxing and doing some fishing. It is a 3 hour drive for us and a condo right on ocean with a balcony looking out on the water.

    My expander is doing great I think. I had two fills of 100 ccs and in the beginning they put in about 50 ccs. Tuesday, if I feel up to it, she will put in another 100 ccs and then I will skip the week of vacation. It feels hard a lot but the PS said I am healing great. I am sleeping on my back still but last night tried to lay on my side with a pillow and I did that for a few hours. I sure hope the port doesn't give me any problems.


  • Lilir
    Lilir Member Posts: 38

    Hope everyone is well... I am in the waiting pattern phase of my care. Lots of things up in the air for me....

    Mamaprint on right mass came back low. No chemo for me.

    Have to wait until surgery to get staged.

    Left mass May have cancer as well, so surgeon taking 4 lymph nodes on that side as well.

    All this waiting making me nuts. The thoughts that run through my head are very frightening.

    Trying to learn how to mediate. Suppressing those nasty thoughts has been a real challenge.

    Marie914... working is an option under chemo? That is great! Will be great for your mind.

    I really belong in the Nov surgery group cuz my date got posted for NOV 6.... so close yet so far away.

    Sending good vibes for everyone!!

  • juju-mar
    juju-mar Member Posts: 200

    traditional chemo AC for 4 treatments, then Taxol for 12 weeks. Praying Nothing has spread beyond the lymph nodes...that's what I'm most nervous about. Still cry daily, but also make the decision not to let cancer rule my world. I try to laugh daily as well and find the humor where I can. Talking with other women has helped me too. I work part time in a hospital, but to limit my exposure to Covid, I am on extended sick leave. I miss my normal life! Hope everyOne is hanging in there

  • mama2fourkiddos
    mama2fourkiddos Member Posts: 48

    Jujumartin - Praying that your tests this week come back with no more surprises. Your last couple of weeks have been very rough...I hope you find some peace very soon and can just move to the next step of treatment with no more changes in diagnosis. On a funny note...I got myself a cleaning lady too! :) I've been contemplating it for a while, before finding out about cancer, but when I got diagnosed it was a "present" to myself. It's such a unnecessary weight off my shoulders and hopefully yours too to just not have to worry about cleaning the house and letting you just concentrate on you. I hope you find the same relief from it!!

    I hope everyone else is doing well...I know a lot of you are in the process of recovery. Hope it's going smoothly for everyone!

    I had to go see my surgeon today as I was leaking some fluid from one of my incisions. Initially I was feeling great, but over the past couple of days I've just noticed a lot of discomfort, basically in my armpit, and then yesterday a tiny part of one of my incisions looked infected. She removed a ton of fluid today and while it was really uncomfortable at the time, over the past couple of hours I definitely feel the relief from it.

    My follow up appointment wasn't actually until 10/27, but she had my final pathology back today and gave it to me. All good...clean margins and nothing in the 3 lymph nodes they took. I'm so happy and relieved. Meeting with the radiation oncologist next week to move onto that phase of treatment.


  • Lilir
    Lilir Member Posts: 38

    Jujumartin...

    I guess you got the pathology better verified. I am sending good vibes your way..

    Stay strong....


    🌈

  • juju-mar
    juju-mar Member Posts: 200

    thanks ladies! I saw a second surgeon today and she said last Monday's MRI showed more than one margin still positive. Calls it multi focal, but thinks chemo, mastectomy and radiation will take care of it. Seems we are throwing everything at it, so I hope so! And as for the cleaning lady, I too have been thinking about hiring someone for almost a year, and cancer cemented that decision 😊 I did ask her if this cancer is Ductal or lobular. She said Ductal with lobular features, but definitely Ductal. Now just praying it hasn't spread. What a roller coaster of emotions! I have a friend who just got called back for a second mammogram and now they want to do a biopsy. She is scared. She is pre menopausal with no family history. More likely cysts or calcifications. My breast with the lumpectomy is still so full of fluid, same size as the other. MD said it can take weeks and sometimes months for the fluid to reabsorb. Didn't know that! Hope everyone is well

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    Hi Everyone -- I'm 16 days post-op from my bilateral mast. I can definitely report that the healing has not been linear! Some days (minutes, hours) are better than others. It's bizarre, but I think I have more pain today than I did last week at this time. I have a crazy freezing sensation across my chest and arms and lots of tightness in the incision. I did not have reconstruction and I'm not intending to, so I just have a horizontal incision across my chest, consistent with the "going flat" protocol. I also was sent to the ER a couple of nights ago by my home care nurse (lucky to have been assigned one due to anemia and a couple of other pre-existing conditions) because an area of the incision on my left side was inflamed and there was a small amount of discharge. After 5 hours in the ER (isn't that always the minimum time there?), they decided it was a superficial infection and sent me home with antibiotics. I've been feeling very crappy and emotional ever since. The low blood iron hasn't been resolved, so I'm scheduled for a couple of infusions next week.

    I suppose the worst news came yesterday when the FISH pathology update showed that I am HER2+. It had previously shown negative. So, this complicates matters when it comes to chemo. Judging from what my oncologist said on the phone, it looks like it will last a year with Herceptin (likely) and an adjuvant drug. I'm so terrified about this because I get nauseated from even the slightest things and I'm assuming I'll be in for quite a ride, not to mention the issues with low hemoglobin and iron, which can be worsened by chemo.

    I've been teary and pitiful, thinking about the plans I had made for the next couple of years, including hiking one of the U.S. long trails as well as road trips with my boys, who are now 16. I had been hopeful after hearing originally that the HER status was negative, that my chemo course would be shorter and that maybe, just maybe, some of the plans could be preserved.

    Anyway, that's my pity party. I hope there is more hopeful news from all of you. I admire everyone's strength and determination. I just don't know where to find that right now.

  • juju-mar
    juju-mar Member Posts: 200

    I am so sorry WordGirl1968 for the crummy news and less than ideal post op experience....you have a safe place to vent here and know that we are rooting for you! The emotions are good to feel and let them happen. I've cried more in the last month than probably in the last 2 years. It's ok to mourn the normal plans that we had in place for travel etc. Cancer sucks no matter what. Hang in there....hugs to you

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    jujumartin: Thank you very much. As I can see, reading back on your posts, you've had quite a mind-bender. I'll follow your progress, too. Please take care.

  • a_wully5
    a_wully5 Member Posts: 3

    Hi ladies, it’s been a while since I’ve checked in. Bilateral mastectomy was on Oct. 9th, but then we had 3 birthdays to celebrate the following week with 2 of my kids and also my husband. It was a lot.

    Post-Op appts were Monday, 10/19. I am healing very well and they took the drains out which was nice. Still some oozing of fluid though coming from where the drains were. Prior to mastectomy they did a sentinel biopsy. 2 nodes had cancer in them. We agreed to take out all the lymph nodes on the left side during mastectomy. An additional 16 were taken out during surgery and 2 more nodes came back with cancer. So 4/18 nodes with cancer. Lots of discomfort under that armpit, because a fluid pocket was not draining. They extracted 75ccs of fluid on Monday, which helped, but I can feel it is accumulating again. It make take a while for my body to start absorbing it.

    They removed all the cancer on the left side. 3 tumors with Invasive Mammory Carcinoma and all were mixed with ductile and lobular features. There was a lot of non-invasive cancer as well, but they got it all. Right side came back as benign, so no lymph nodes needed to be taken.

    Staging is at 1B, which really surprised me. I think it’s because the largest tumor is 2.1cm. Definitely planning on chemo and radiation, but haven’t met with oncologist yet. Hope to do that within the next week.

    Praying for everyone on this board!! Stay strong and know you are LOVED!!

    Amy

  • hnsquared
    hnsquared Member Posts: 47

    WordGirl....I happened to see your post about a her2 change and wondering next steps. I was diagnosed 2/20/20 with invasive ductal carcinoma Er/Pr + her2-. When I met with my breast surgeon she felt a node and biopsied it and I had cancer in it. Due to that node I did chemo first. I did AC-T, finished 8/5 and had a bilateral mastectomy on 9/21. My pathology from surgery showed my tumor was her2+. The standard chemo for her2+ is TCHP and then continue with the HP Herceptin and perjerta for a year. The Herceptin and Perjeta is not chemo and my pharmacist said it’s well tolerated. I will start that immunotherapy next week. I did taxol for 12 weeks and is the T of TCHP and tolerated it very well. I drank a ton of water, kept up exercise, worked full time and I never had any nausea. I did take the meds to help with nausea and I did well. You can do this. Once you are done with the chemo part the HP should be very doable.

    Hang in there....all the unknowns are hard.

    Heather

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    hnsquared: thanks so much for your words of wisdom. What was really alarming is that Herceptin/perjeta are typically given BEFORE surgery, but we didn’t learn about my changed HER2 status to positive until after my BMX. Not sure how or if that changes things but I have a few weeks before any chemo would start since I’ve been so severely anemic and we need to fix that first. Yep, we are all full of surprises, aren’t we?

  • hnsquared
    hnsquared Member Posts: 47

    wordgirl...mine also changed after surgery so I had a different chemo prior to surgery due to the her2- status at that time. My case was taken to the tumor board and they assure me that Herceptin and Perjeta are wonder drugs for her2 + cancer. A change in tumor status isn’t common but it happens and I have met a number of women on this board that had it happen and are thriving. Lots of women have surgery first then find out they need chemo. The biggest advantage to having chemo first is you know how the tumor responds to chemo. I hope they get your anemia under control. Don’t hesitate to reach out if you need anything. Sending you all the positive vibes

  • msmpatty
    msmpatty Member Posts: 35

    Hello ladies. I had a lumpectomy+sentinel node biopsy today so I'm resting and checking back in with my old friend breastcancer.org. This is my second go round. Finished my ten years of hormone therapy in March (after lumpectomy, chemo and radiation in 2009). Yeah! Diagnosed with a NEW primary tumor in the other breast this month. Boo! This is not a recurrence or mets, but a whole new cancer that gets treated just like the first one....good news according to my doctor. I was HER2- the first time so I did not do Herceptin, but ladies who did it found it very tolerable. I did AC which is totally barf inducing, but got three days of Emend after each infusion along with a couple of other antiemetics and never felt more than just a little queasy. Just be sure to take the antiemetics on the schedule you are given so nausea never gets a chance to start. I also did 12 weeks of Taxol which wasn't bad at all and my hair starting growing back while on it. Anyway...it is all totally doable so don't worry too much. BTW...a second primary in the other breast is very rare so don't let my experience give you something else to worry about. Patty

  • WordGirl1968
    WordGirl1968 Member Posts: 29

    hnsquared: thank you for the explanation! I just went back and read your original post about this. I also just leaned that a single tumor can be heterogenous for HER + and -. In other words, the biopsy sample can be from one side of the tumor and shows negative while the FISH sample a couple of weeks post op shows positive. I’m still healing from surgery and my hemoglobin and iron are both stubbornly low, but once I’m stabilized I’m supposed to begin the Herceptin and Perjeta protocol. I’m nervous due to reports about possible heart complications. That’s all we need on top of all of this, right? Hope you’re doing well. I’m having terrible pain the past few days and just inquired about my symptoms over on the post-mastectomy pain syndrome board.

  • HH25
    HH25 Member Posts: 4

    Hey, Everyone!

    I’m having my expanders to silicone swap out surgery on Tuesday and I’m ready to close this chapter. Good luck to everyone having surgery!!

    Heather

  • Lilir
    Lilir Member Posts: 38

    so Happy for u HH25!!!

    I keep dreaming about getting on the other side of this... like a goal....

  • sharon0706
    sharon0706 Member Posts: 80

    Hi all. I'm new to this group and feeling a little shy, but could use some support about really doing my PT and self-massage.

    I had a double mastectomy on 10/20 and am three weeks out. I think I had expected to feel better by now. I am still taking oxy a couple of times a day and am sleeping more than usual, fighting constipation, and am generally irritable and achy. I have one remaining drain and I am praying that it will come out in the next couple of days. I still don't like to look at my breasts.

    I have one remaining drain and am so sick of it! I need some motivation to do my PT and self-massage, and I also need some motivation to stop eating all the carbs that I've been eating for several weeks now in an attempt to feel better. I've gained a few pounds, and while I gave giving myself permission to be more flexible with my eating post-up, the truth is that it is very hard for me to lose weight, especially now that my exercise routine is temporarily on hold.

    Next week I will find out the oncotype recurrence score, and if I will need chemo. I had been on tamoxifen preventively for ten years when I was diagnosed with cancer this summer, so I am somewhat of an anomaly for my doctors, I think.

    I alternate between hope that the cancer is all gone, and dread about chemo.



  • Lilir
    Lilir Member Posts: 38

    Hang in there... None of this is easy at all. I cried last night because I feel deformed and the darn drains. They are making me nuts.

    Talked to a neighbor who is one year out from all this. She said it takes time for the breast implants to heal and take shape. Made me feel better. She also said that I have to remember that it is not going to look like the original set. Good expectation to get out of my mind.

    My surgery was just on 11/6, and I can certainly say that I am tired of this already.

    The road is not an easy one. Have u tried meditation? It has really helped me.

    what type of tumor do u have?

  • sharon0706
    sharon0706 Member Posts: 80

    Thanks Lilir. Thanks for responding. Yes to feeling deformed and the darn drains. I really hear you.


    I do meditate quite a bit. I find I am craving it more these days, but sometimes I wonder if it's because I'm generally looking for an escape, and also because I usually fall asleep at the end.


    It turns out that my cancer is an anomaly because it showed up while I had been taking tamoxifen preventatively for 10 years (because of a strong family history). It seems I am stumping many of the Boston doctors who hear about my case because this doesn't usually happen. They aren't sure if chemo will really help, since all the data about chemo's effectiveness is based on data from women who got breast cancer without being on tamoxifen.


    I am three weeks out today and it's the first time that I've gone 12 hours without taking an oxycodone. Hope your healing continues to go okay.
  • Lilir
    Lilir Member Posts: 38

    Just a few questions.

    Sharon0706

    Are you seeking oncology treatment at a major academic center? If not, I highly recommend it. Your tumor may not be an anomaly at all. Tamoxefen is known not to be metabolized by some people due to lack of a liver enzyme.

    Just my thought. U may benefit from a hysterectomy and oophrectomy, so you can take an aromatase inhibitor instead of tamoxefen.

    I am by no means a cancer treatment expert, but I would seek help from an academic center if I were in your position.

    Will be sending good vibes

  • sharon0706
    sharon0706 Member Posts: 80
    Hi Lilir. Thanks for your response and good vibes. Yes, I am getting treatment at a major academic center. You are right that after chemo the plan is for me to get my ovaries removed and go on an aromatase inhibitor. Take care and hope you are enjoying meditation.

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