Posted on: Aug 14, 2019 10:39PM
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.
Posts 151 - 180 (298 total)
Sep 16, 2019 01:13AM cathy67 wrote:
Don't worry, it is not pleasant, but so many women spent through, you will.
Sep 16, 2019 01:16AM purple-flower wrote:
hang in there Lucy!!!! this is truly a hard part but it will pass. just keep breathing. take a nice long walk, do jumping jacks, flap your arms around (like my daughter said ha ha) since you won't be doing that for a while.
we will all be routing for your every step of the way!!
Sep 16, 2019 03:27AM - edited Sep 16, 2019 03:30AM by Trying2staypositive
Hello all so I've had a rough couple days healing, but was mostly from the painkillers and other drugs. Ive been only on tylenol the last two days. My heart cant handle the narcotics. So yesterday and today I'm feeling pretty good. Luckily all the lymph nodes and margins were clear in surgery and pathology, however I got some very scary results. I actually had three different types of cancer plus DCIS in the left cancer side and all kinds of lcis, adh and alh which I knew about.(Nothing but benign on right) One cancer is an extremely aggressive but extremely tiny IDC. I'm not really sure what's going to happen or if I will get chemo based on that as a grade 3 9/9 nottingham score and that CANT be any worse. Makes the others look like Mickey Mouse. But on the upside it was only 1.8 mm. The largest was an ILC I knew of at 1.0cm right on the nose with hormone receptors. The other two in between size- 1 other ILC (both ilcs grade 2) and a low grade tubular-grade 1. Waiting on hormone receptor status. Will take several more days. Praying nothing is her2+ bc I could never handle herceptin. Due to my heart. Even though Im fairly young.Its tough. Not what I was expecting. Although the surgeon says this is not all that unusual to have many types. Praying none of you do also. Not sure what treatment they will propose. Still calling me a stage 1 as I guess they take and treat the largest cancer which is the ILC. Its alot to absorb
Sep 16, 2019 03:37AM purple-flower wrote:
Trying2... oh my heart is with you. scary and frustrating I am sure, on top of the struggles you have had w the heart complications. Huge hug! ok.. so they cut so much out that's good. and as you said its very small. so... that's all good. for the next steps it will work out - one step at a time. just try to rest and heal for now so you can reset at be ready for whatever is next. you are strong and brave. you got this!
here for you...
Sep 16, 2019 05:49AM aaoz19 wrote:
I'm going in for a lumpectomy on the 23rd and SNB as well. I will be having the seed put in the same morning as well. Sounds like you had a bit of a rough time - any words of advice to help me prepare? It sounds like you're doing better - that's great to hear. I hope your pathology reports are all good!! Thinking of you!
Sep 16, 2019 11:05AM cathy67 wrote:
Our surgery were on same day, and I got to get my report on October 1. And when I waked up, it was already in the evening, I did not have chance to talk to the surgeon.
Sep 17, 2019 05:24AM ChaClarey wrote:
Hello all my Septembers,
Just got back from my seed implant prior to surgery on Wednesday September 18th. I am having a lumpectomy and sentinel node biopsy. The procedure is less discomfort than core biopsy and doesn’t take long. It’s followed by “gentle mammogram”, which it was. I got dressed and back to waiting room when they called me back. Ultrasound picked up another lump and another doctor came in to give second opinion. It’s closer to nipple, but does not change surgery plan. Surgeon will just remove more. Doctors said it may not be cancer and could be cyst but they will remove and test. Obviously this was a bit of gut punch to add to what I was already feeling. Hopefully having surgery on Wed will reduce some pressure. Wishing everyone well.
Sep 17, 2019 07:24AM Lucy55 wrote:
Thank you all for you're good wishes !
Had my surgery yesterday ...do on the "other side ' at last ..things went ...feeling pretty good ..I have a PCA pain relief which has been great .My temp is up slightly this morning though..always something 🙄
Trying ..sorry you've had a shock with the pathology... hopefully your treatment plan is the same ..
Cha good luck with your surgery !
Hugs to all
Sep 17, 2019 08:30AM Trying2staypositive wrote:
Thank you PF it is tough. Cathy67 and PF and JenInMass, I hope your reports are good. I hope everyones are!. Lucy55, I am very worried about treatment because not sure I can handle chemo drugs. Afraid of the heart and lung effects as I have some conditions there. Hormone blockers would probably be ok. Its just really tough. I never expected to find a boatload of other stuff. Its pretty awful not knowing the receptors and having a super aggressive tiny idc. All ive read seems to indicate Mo's dont like to recommend harsh treatments for node negative cancers under 3mm. Mine is 1.8mm. Small which is great but Im afraid it will make the decision harder. I think if it has a bad profile they still may. I was already told not all ILC warrants chemo especially with the profile of my known tumor. (Grade 2 1 Cm positive hormone profile and her2 neg.) i also have a tubular which is only grade 1 and that does t seem to be of great concern.Today I started getting a little depressed about it all. I have a 13 year old son. I want to be here for him but healthy enough to have a good life.
Sep 17, 2019 11:37AM Jumpship wrote:
Hello September surgery gals! Sending best wishes to all of you. My surgery was September 30, 2014. I remember days after surgery when I was by myself in the house, staring at a coffee mug on a shelf I wasn’t supposed to reach, trying to will it down. Be gentle with yourselves.
Sep 17, 2019 12:06PM Trying2staypositive wrote:Lucy, a little more on 9/23 but otherwise not until I get in with an oncologist after that. Im really struggling. I think Im just struggling recovering and dealing with negative results. I realize they could be worse, but Im scared. And everything seems worse when you just had major surgery. My drain sites hurt and everything else. Nurse was here and guess its fine but hard to believe im going to make it through all this unscathed. Also my Mom was here helping and she had to go back home. I think I just feel alone. My husband tries and helps in practical ways but I am emotionally alone and overwhelmed. I wish I knew how to feel better. Im afraid Im going to lose it during my first follow up appt Wed w my plastic surgeon. Hes really cute and kind so thats not going to help! I dont like crying-I really hate it.
Sep 17, 2019 03:01PM Lucy55 wrote:
Trying ...Sending you a big hug ...You'd feel even more unsettled now your Mum has had to go home too ..Hang in there ..soon you will know all the details , and know what your plan is for sure ...you'll feel much more at ease then ..xx
Sep 17, 2019 09:47PM - edited Sep 17, 2019 09:55PM by purple-flower
4 am here and my usual wake up/I have had enough laying down discomfort time... so I write this as the house is very quiet and dark. peaceful actually.
Lucy - glad to hear you are done with this part! I had a low temperature for 3 days, with a pretty bad headache. strangely that was the part to start that bothered me the most. it did go away finally so keep an eye on it but I heard from many different people that it is normal if stays low and just your body reacting to the surgery in some ways as it should...but definitely keep an eye on it ito make sure doesn't climb too high in case of infection. oh, and surgeon told me that sometimes relates so breathing issues so try to practice deep breaths throughout the day to help it clear.
Trying...I have twins that turn 13 in January. total pre-teens now! (I have a boy and a girl).I am so so sorry you have to deal with more worry and waiting after coming this far. and I think it is crazy having so many diff types of tumors I mean seriously wtf right.? I had a priimary tumor like you ERPR+HER- and then also a baby tumor (unknown still) and other enhancements so I am nervous about those sites. Hang in there and try not to think the worst even though I know it's hard!!
On my end more craziness to report. Over the weekend right boob had puffed up after a nap and was dumping a lot if blood into drain. so after monitoring for a few hours they had me go back to ER to assess if needed another surgery to open and stop the bleed. luckily we were able to control it hours later w compression so surgery avoided but it sucked! I am so tired of worrying all the time! When I was there the surgery resident who checked me before PS arrived did something to left drain and now it kills all the time - super crazy sharp pain every time I change positions. it is so upsetting and barely tolerable.
Also crazy but when my mom arrived for weekend my step dad came with her for the weekend to see kids etc. He went back to airport yesterday to fly home. During my follow up visit yesterday phone rang w paramedics telling my mom that he took himself off plane w heart afib and they were taking him to local ER. ok so mom goes there, I go home in cab and husband meets me home from work. After many hours step father came back and was ok (didn t look great) and will now stay here a few more days. My poor mom now will care for both of us in our small house. geesh. I hope his night had been ok... will know in a few hours.
The drains really hurt and the expanders feel like they are 3 sizes too big for my body. My shoulder and arm hurt hopefully just from muscle strain and I am still hobbling around unable to do much at all. bleh. oh and left nipple looking very dark. PS gave me some .medicine patched to wear over boob hopingit will help w blood flow so now I can add " save the nipple from being cut off" to the worry list. I am so very tired of worrying and waiting. exhausted actually. I feel like when ALL of this is behind me, if that is ever, I will sleep for a week straight. Anyway be kind to yourselves - this is hard work!
Sep 17, 2019 10:18PM cathy67 wrote:
Sorry to hear all of those, on top of diseases, some other stuff also brought troublesome. Mine is a 14 years girl, already taking me much efforts, now comes the cancer. I pray for my post-op report, hopefully it is good to make the follow-ups easy.
Sep 17, 2019 10:36PM HopeWins wrote:
phew - ladies this really is the tough time. PF - what else can go wrong? I swore the drains were my nemesis. They really were so painful. Is that left one putting out less than 30cc yet? Maybe they'll just take it out? I think it's the stitches they use to hold it in place that pinch. The two spots where I had my breast drains healed pretty quickly after they were removed but my two abdominal drain sites are still painful and not quite sealed 2.5w after removal.
I know a bunch of you had surgery the 10th and 11th. For me, this is the day I started to feel better, so really wishing you all the same. The first week is brutal!
Sep 18, 2019 08:08AM Jlimo wrote:
I thought I would check in. I had my bilateral lumpectomies and SNBs on the 13th. Went home the same day. Had kind of a rough night the first night home with nausea and pain, but every day has gotten better since.
Still can't really use my arms for a lot, but my range of motion is improving every day. The incisions for the SNB are pretty big and sort of Frankenstein like. I think they will show when I wear a tank top, but I will wear them proudly. The breast incisions are not so bad by comparison. My breasts look a bit deflated, but not so very different from before.
I feel bad complaining, because I know a lot of you have had a much rougher route and then I've had to travel.
My surgeon has recommended two weeks off work. I have plenty of sick time accumulated, so that's not a problem. My follow-up with the surgeon will be next week. He said they might have the pathology by this Thursday. BS said everything looked good.
I'm hoping the worst is behind me. Once I've had my follow-up with the surgeon, they'll set me up with an RO and an MO to figure out what the next steps are.
Best of luck to those of you healing and those of you waiting
Sep 18, 2019 08:16AM - edited Sep 18, 2019 08:20AM by butterfly620
Hi all! I am having my bilateral mastectomy on the 27th. I am 36 years old, and I was diagnosed on 8/5 after I found a lump while stretching. After some back and forth between doctors, it was decided no neoadjuvant chemo (SOO thankful for my oncologist!!). I have at least one positive lymph node (enlarged node seen on ultrasound--biopsy showed cancer in it and the palpable tumor). I find myself here ready to begin this journey that none of us ever wanted to be on.
Sep 18, 2019 09:07AM cathy67 wrote:
Thanks for the sharing. It sounds we two have quite similar situations, but your pathology report is supposed to be back earlier. My appointment with surgeon will be October 1, though she said report will be ready in two weeks, but she is too busy that I cannot have an earlier appointment.
Sep 18, 2019 10:58AM ChaClarey wrote:
“‘Twas the night before surgery and all though the house a creature was stirring like a scared little mouse”
I am arriving at hospital at 6:30 tmr morning. Dye injection, then lumpectomy and sentinel node biopsy. I’m feeling nervous, but also some relief that by this time tmr the surgery will be done.
I am just doing some last minute things at home like getting comfy clothes and slip on shoes ready for tmr. I hope to get a little sleep and then early rising.
Best wishes to all those September pre/post surgery.
Sep 18, 2019 01:25PM cathy67 wrote:
Now it is your turn, pray for you!
Sep 18, 2019 07:30PM ChaClarey wrote:
Thank you all. I’m up showered and getting ready to go. I’ll post when I’m able to let you know how it went.
Sep 19, 2019 01:35AM halezma wrote:
Surgery is tomorrow!! I have to be at the hospital at 7am (east coast time) for dye injection and mastectomy surgery expected to start around 930. I feel super jittery today. I just looked at the clock and said this time tomorrow I'll be in the middle of my surgery.
Sep 19, 2019 07:21AM ChaClarey wrote:
I am home. Day was long but went well. I will have video chat with my surgeon on Friday. She told my husband it went “beautifully” lol. They gave me pain medication in hospital as I was feeling some pain but all good now and I will take another at 5:30 est. I do feel a weight lifted that this part is done. Hopefully Friday will give me some mire info. Thanks for all well wishes. Good luck to remaining Septembers
Sep 19, 2019 09:41AM IBJUSTFINE67 wrote:
The waiting for this part that you just did was the worst for me. I am so happy for you♡ Stay ahead of the pain, don't feel bad saying it's not working and ask for anti nausea meds if needed. Way to go♡♡♡♡♡
Colleen (my surgery was August 12th)