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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 08:39AM

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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Sep 20, 2019 09:59PM JenInMass wrote:

For some reason today was the roughest emotionally since surgery day (11 days ago if I'm counting right). One drain is out and I am getting so annoyed with the other one but so far it's not slowing down enough. Still 25 cc at each emptying (I was instructed 2x/day) and I need it under 30 total per day for 2 straight days. I have another appointment Monday so I'm hoping this slows down dramatically over the weekend.

But I'm also feeling so frustrated by the lack of activity - it's not good for mood and it's hard to imagine getting back to work soon. But also I hate being dependent on others. I didn't even have a BMX so I can do a reasonable amount of stuff myself but I'd really like to be able to change the sheets or drive my daughter to dance class. I did take a short drive around my neighborhood yesterday to see how it felt and was feeling good but now I'm thinking maybe I'm being too active and that's impacting my drain volume?

I also have been second-guessing my decision to do reconstruction because I know that means going through all the post-surgical stuff again in the not too far future. And figuring out how to dress during the tissue expander process when they won't be even (because even when I finish fills it's going to be a very different shape on that side until the implant is in.) But I know I'd be really frustrated with a prosthetic and the breast I still have is too large for me to personally feel comfortable just going flat with no prosthetic. Really I should have just not gotten breast cancer....

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Sep 21, 2019 12:18AM - edited Sep 21, 2019 12:19AM by ChaClarey

Hello Septembers'

It is just passed midnight and after an uneventful day my evening took a turn. I have started to swell and my under arm is especially tender. My sports bra feels tight , but my surgeon says it's important to wear it all the time even when sleeping. I'm guessing this is fluid build up. Any thoughts

Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 21, 2019 12:40AM Lucy55 wrote:

I had seroma and hematoma after my first mastectomy..does it feel like a lump ..or like fluid under the skin .?..The doctor drained my seroma and it felt so much better.

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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Sep 21, 2019 12:44AM ChaClarey wrote:

Hi Lucy55It doesn’t feel like lump, just whole area swelling like water balloon.

Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 21, 2019 12:53AM Lucy55 wrote:

To me ( but I may well be wrong ) it sounds like seroma ..I'd go back to your doctor to have it checked ...when they drained mine it was painless ...


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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Sep 21, 2019 12:59AM ChaClarey wrote:

Thank you Lucy55.

Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 21, 2019 08:13AM ChaClarey wrote:

First Shower post surgery was bliss. My surgeon said to shower but to cover up surgical site with Plastic wrap to keep it dry. I used Saran press and seal and it worked well. It gently stuck to skin but had good coverage. I had help(spouse) to shower and wash hair while I ensured wrap was keeping water out. A little corner of dressing got damp, but I patted it dry. The nurse is coming to change this morning so I’ll wait for her to take it off.

Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 21, 2019 08:43AM HopeWins wrote:

JeninMass - hang in there. I hear u on the lack of activity/depression. You can take multiple short walks daily I believe. I made a list of things to do like ordering xmas cards, organizing silverware drawer, etc. Tried to do at least a couple things each day to make me feel less like a lump on a log. The drains suck. No two ways about it. Wishing you speedy removal soon!

RE recon, you have time and options. If you decide you don't want to be that large, you can have a reduction on the non cancer side to match whatever implant you choose. I believe insurance has to cover.

I went back for my 4w with PS yesterday and the first available surgery date for my revision is March 2nd. I've had a few cries thinking about living with my body like this for another 5 months. In my head, I would have been done before Christmas with this process. Trying to find the good in waiting... I need a sign I think.

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Sep 21, 2019 09:48AM gretchy wrote:

no, I'm due for double masectomy in mid October. Date not set yet. But wondered what you did to prep for surgery and recovery?

Dx 10/1/2014, IDC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 12/29/2014 Breast Dx 8/29/2019, ILC, Right, HER2- Hormonal Therapy
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Sep 21, 2019 09:51AM gretchy wrote:

oh I did read you can buy a shower vest to hold and protect the drains on this site

Dx 10/1/2014, IDC, Stage IA, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 12/29/2014 Breast Dx 8/29/2019, ILC, Right, HER2- Hormonal Therapy
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Sep 21, 2019 10:36AM HopeWins wrote:

gretchy - ask your PS. I was fitted for a camisole with drain holders at the hospital. I got one extra so I could rotate and wash. They submitted to insurance and most of cost was covered. I only wore them for like 10 days. Some surgeons want you in a surgical bra. Some want you with no bra.

I was allowed to shower with drains, nothing covered/protected and I think that's pretty common. At most you might need a lanyard/shoelace to attach your drains while you shower.

You may want some button down shirts so you don't have to lift your arms, but a wide neck shirt or quarter zip can be pulled up over your hips without any trouble. I didn't buy much. Honestly, stuff leaks and you won't care much how you look for the first week or two. Anything old, comfortable, roomy will work.

Recommend a recliner if possible, preferably electric recline. Body pillow for when you transition to bed. They gave me a grabber at the hospital. That came in handy.

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Sep 21, 2019 11:04AM CAP0703 wrote:

Hi All

I'm new here. Had a lumpectomy and Node biopsy 2 weeks ago. Have been doing fairly well, saw the surgeon Tuesday and she thought everything looked great.The past couple of days have noticed a little more pain and swelling, and my range of motion isn't as great (or at least more pain with it). I saw the oncologist yesterday and almost jumped off the table when she examined me. She mentioned a possible seroma or hematoma, but not like its a big deal.

Wanted to see if anyone else has had this 2 weeks after surgery. I'm not supposed to see the surgeon again for a few months.

Thanks,

Cathy

Dx 8/1/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (FISH)
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Sep 21, 2019 11:43AM grayskies wrote:

I have a lumpectomy scheduled for September 23rd.

I am not really nervous at all. I think I am in denial.


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Sep 21, 2019 03:12PM purple-flower wrote:

Hi Gretchy

I bought a waste pocket thing for the drains (kind of like a fanny pack. It comes w/a shower net that you wear over neck. It's been great. You can wear under whatever and also to sleep. I haven't had any issues catching or such. Good luck!

J

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Sep 21, 2019 03:26PM JenInMass wrote:

I didn’t buy anything special for the drains. I woke up in a bra that had a ring on each side for holding drains (they gave me an extra too), and my PS had them stick a little catheter holder with Velcro tabs to my hip for holding drains while showering (her instructions were to wait until after she had seen me on day #6 but didn’t need to wait until both drains were out).

BUT on the drain front, OMG, a little bit ago my bra was uncomfortable and I reached to pull the band down a little and accidentally tugged on the drain instead. I only pulled it a centimeter, maybe less, but I almost fainted. According to my Fitbit my pulse dropped down to 48. My H got me a cold compress and my daughter got me a popsicle and I’m feeling better now, a little woozy,but OMG. I’m trying to figure out if this is something I need to call my PS about. I will see my BS Monday morning and my PS Monday afternoon. I am afraid to move right now.

Lesson - be super careful when adjusting your bra or binder if you still have a drain in!!


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Sep 22, 2019 08:45AM ChaClarey wrote:

Hello all,

I felt so good the day after lumpectomy that I stopped taking prescription pain medication and switched to Tylenol. This was a mistake in my case, I didn’t sleep that night and was very uncomfortable as I started to swell and feel pain. The next day was bad as well and I couldn’t rest. I decided to start prescription again and took meds accordingly an slept most of night. I guess my advice is don’t stop pain meds too soon as they are prescribed for a reason.

Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, ER+/PR+, HER2- (DUAL) Surgery 9/18/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 22, 2019 01:35PM Lucy55 wrote:

Grayskies..thinking of you ..and hoping everything goes well with your surgery !

JenninMas..I know what you mean about the drain !!! I've tugged on mine a couple of times and the pain was terrible !

Trying ..I hope your recovery is going well !

Cha..I tried to stop prescription meds too early too ..haven't had one for days ( my surgery was the 16 th ) but actually had to take one last night ..I think it was a wake up call that I had tried to do too much yesterday ..and I need to let myself heal .

Cap..with my first MX I had a large hematoma and lots of seroma and the pain was much , much worse than this time ..and recovery so much slower ..took me much longer than expected ( than I expected ) to start getting my range of motion back ...

Hugs




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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Sep 22, 2019 01:36PM - edited Sep 22, 2019 01:38PM by Lucy55

Edited because of double post

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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Sep 22, 2019 07:48PM LoveMy4Kids wrote:

Hi all, I just had a right side mastectomy with ALND on Thursday 9/19. It really hurts even though I'm taking the prescription pain killers. I have a lot of nerve pain and numbness in my underarm and the back of my arm. My surgeon said to expect this. And that it may last for months or years or forever. I'm already tired of being in pain and laying around. I've been weepy because of the loss of my breast and also dealing with having had ALND. No one told me until the day before surgery that I'd be having dissection not sentinel biopsy. Neither the surgeon nor the oncologist communicated that decision to me even though there were six weeks between my last chemo and surgery. I understand why they made that decision but I'm upset with the lack of communication, and the anger, fear and pain are flooding me now. I've already been through AC and I've got to start Taxol soon and radiation after that. I've been making it through pretty strong so far, but this is just so much to handle. Thanks for letting me vent.

Dx 5/22/2019, IDC, Right, 2cm, Stage IIA, Grade 2, 3/10 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 6/26/2019 AC Dx 6/28/2019, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/19/2019 Lymph node removal: Right; Mastectomy: Right Chemotherapy 10/7/2019 AC + T (Taxol) Hormonal Therapy Radiation Therapy
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Sep 23, 2019 12:56AM - edited Sep 23, 2019 12:56AM by purple-flower

Hi Lovemykids

You have every right to be pissed at that lack of information. That is not ok. Sorry that happened. And yeah, I had a lot of pain also even w the painkiller they originally gave me. I actually asked to switch to a different one that I could take while also taking the Tylenol round the clock and that seemed to help. So don't be afraid to keep taking it or ask for a diff one to try also.

I had a BMW w expanders put in on 9/11. I still have drains in and hoping they will come out at Tues appt. the pain in is finally subsiding just last day or 2 (so that makes it a solid week+) so hang in there it will improve!

And rant away!!... you should see some of my earlier postings. ugh. and surely more to come on my end too. this whole thing sucks. but we will get through it and come out the other side stronger and more determined than ever.

good night.

PF

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Sep 23, 2019 07:24PM purple-flower wrote:

Ladies!!

Just got my pathology report! - Right side 0/4 lymph nodes positive! (all clear!) 8mm ILC and all clear margins around it. Some ILC in situ - all removed - all margins clear. Nipple underside biopsy all clear. Left side totally clear. Says nottingham grade 2 - which I guess is not as bad as 3 but not as good as 1. but.. I'll take it. YAY! my heart is still pounding from seeing the results email in.

So.. ok, while I am awash with relief, I am a bit sad that left side boob is gone too. But, I know ILC can return in other side which factored into my decision and no going back now anyway. ha.

Have more questions for surgeons about what's next w/treatment, etc. and then dealing w/the expanders, next surgery for implants,etc. but all seems a little less gray now. I am wondering if left TE is not holding the little liquid she put in already. Need to see about that.

Ok, time to go, just had to post since this has been such a terribly difficult path so far. A small ray of sunshine!! Good luck to you ALL!!!! Hang in there.

hmmm... wine tonight? :-)

xx PF



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Sep 23, 2019 07:37PM HopeWins wrote:

PF - I'm so happy for you!!!! I cried like a baby when I got my results. I was so grateful

Our results are very similar but I had DCIS in the right. Going in, they had a close margin from the excisional biopsy. Turned out there was more DCIS that they didn't expect. More ADH and ugly, non-bc stuff. I would not have been wise to leave it as is.

My left side was clear, so I hear you. I had a smidge of regret with bmx but as my pain subsides I regret it less every day. No hormone therapy, no more mammograms, no more worrying. Every woman makes their own right decision with the info at hand and all the emotional and mental strength we have at the time and we need to come to peace with it.

And Yaaasssss to the wine, lol!

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Sep 23, 2019 07:46PM cathy67 wrote:

PF,

Great!!! I am still waiting for my appointment which is scheduled to be next Tuesday, the surgeon is too busy,. it is hard to see her just in two weeks. Grade 2 is better than Grade 3, of course! Mine is grade 1 in biopsy report.

Did they report you the receptor status again in the final pathology report? ER, PR and Her2? All of mines are very good in biopsy report, just worry those will be different in the final report. Always worry, worry, ..

Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2-
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Sep 23, 2019 09:34PM purple-flower wrote:

Cathy - I only heard the ER/PR Her status from before surgery so far. I have an appt tomorrow afternoon-( crossing fingers drains come out!) so I will ask more. at biopsy was Er/PR+ and Her- so hoping that stands. I was grade 1 at biopsy too so that seemed to change. but then the MRI said 1.3 cm tumor and these results say 8mm at largest part so need to see what that means too. more to come! my doc emailed me results can yours?

Hope - yes!!! I didn't cry but my heart was thumping for a long time after! mom cried.

phew.

PF

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Sep 23, 2019 10:19PM cathy67 wrote:

PF,

Yes, I remember we two got exactly same biopsy results. Mine is 8mm in ultrasound, and 8mm in biopsy. Please back here for updates after your appointment, and best wishes!!!

Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2-
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Sep 24, 2019 06:56PM Trying2staypositive wrote:

Hey all im still around. Hope all ladies doing well. I needed a break from posting.

Having some wound healing issues (skin) so probably going back to surgery in a few weeks. Just a sometimes complication from mastectomy. Im glad my surgeon aggressively got the breast tissue out which is what leads to this type of issue, but really only two small areas are problems. Plastic surgeon just needs to remove it and resuture. Two drains gone , two to go.

Finally Got full pathology and the tiniest tumor is the scariest one-I see the oncologist Mon. Surgeon says they likely wont recommend chemo for something that small with clear nodes and margins and my other ILC tumors are lazy slow types so not great responders to chemo. All my tumors were 100% Er/PR + and her2 neg so Hormonal therapy for sure. Its that little IDC that has me worried. I may do chemo for insurance as much as I dont want to. But I mean its 1.8mm....guidelines usually say no but alot of times oncologists defer to the patient if it wont be too detrimental. Still seeing radiology oncologist but told he probably wont recommend anything due to bmx with clear nodes/margins.

So what do you ladies think of chemo for something so small? I just dont know....
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 24, 2019 07:03PM cathy67 wrote:

Trying2StayPositive,

It sounds everything goes well. My appointment with surgeon is next Tuesday, waiting..

Dx 08/06/2019, IDC, Right, 2.1 cm, Grade2, 1/1 nodes,ER+/PR+, HER2-
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Sep 24, 2019 07:14PM JenInMass wrote:

I am drain free as of yesterday, woohoo!

My pathology report from the mastectomy was great, no surprises (unlike my re-excision, which had IDC that hadn't shown up on either mammogram, ultrasound, or MRI), clear margins and just a little DCIS around the previous excision space. So this pathology report doesn't really impact treatment plan at all.

What I do have now is my oncotype score based on the re-excision. 23, which puts me in the gray area of "consider chemo" since I'm under 50. I meet with the oncologist tomorrow. She'd previously been pretty sure I'd come back with a low score so chemo hasn't really been discussed at all.

Trying2staypositive, obviously I'm not a doctor but I also know I personally wouldn't push for chemo if mine were only 1.8mm and grade 2 unless there were other factors involved. In my case I had one 6mm that the oncologist didn't even send for oncotype testing because it was so small and she wanted to see first if a better sample came out of the re-excision (which it did, barely, 8 mm). I just have a hard time imagining - based on what I've read so far - that there would be much chance a tumor that small could have slipped a cell out past the nodes that would then set up shop and start dividing. Not zero chance, but compared to the potential long term effects of chemo, not enough. But that's definitely just me.

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Sep 24, 2019 08:18PM Trying2staypositive wrote:

Thanks JenInMass, the 1.8mm IDC was a grade 3 (3 miotic score) though. Also the first test it was an equivocal Her2 result (not clear neg not clear pos) but FISH was done and came back HER2 neg. It was 100% er pr but the ki % kinda high. You are probably right. I should think more positively. I am also under 50 (46) so I get what you mean about them pushing more treatments due to age. Let us know how your appt goes.

Luckily my other ones all grade one or two super favorable characteristics if you have to have something.

The second surgery for skin necrosis caught me off guard and truth be told the wound care is a little yuck in those spots but my reconstructive surgeon is watching me like a hawk. Hes waiting for my body to show what clearly wont make it. He said surgery will be a quick decision, like within a few days. Hes so awesome and kind, he promised me that I will have a great result and that this is just a bump in the road. If I ever get worried off hours he calls me back super fast or makes room for me in his appt schedule. Gotta look at the positives right ladies?

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/9/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 25, 2019 12:26AM purple-flower wrote:

Hey Trying, I also had threat of necrosis on one side w nipple threat too. PS game me these petroleum large patches to wear on breasts which I did like a week and actually helped it start healing. nipple will most likely make it now. Not sure makes sense in your case but its called Curad Xeroform Petrolatum Dressing. they were 5x9 sticky patches. the package says prescription only but I think we saw them online too. I put a loose guaze over just taped on top to clothes wouldn't get sticky/stained. wore for about 1 week changes every night before bed and morning

More on the rest later but though I would pass that along just in case. gotta go to sleep. soooo tired! Drains came out today! yay. and now I am pooped.

PF


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