April 2019 Surgery Support Group

rrshannon

Motheroftwo36 glad the showers and hair washing are going good I am sure you feel much better just being able to do that. The Oncotype report takes a couple of weeks so if your doctors have not requested the test and sent out the sample you will have to wait.

MountainMia

Hey, Motheroftwo, glad to hear you're feeling better. Yes, tired!

Your cancer center process may be different from mine. I got a phone call today (your surgery and mine were both on 4/18, right?) from the nurse with some of the pathology info. But the full report isn't available to me on the secure messaging system until next week. The nurse said she would send me a copy in the mail. But to decipher it, likely I'll need help from the MO next week when I see him.

Nurse said the MO might be ordering genomic report (like Oncotype) but not until AFTER he talks with me. My cancer is triple negative and Oncotype doesn't work on mine (only ER+, not ER-) so my testing would be a different one, if he wants to do it.

Might be worth calling or messaging to your medical office to find out what the schedule of info to you will be. Or just wait patiently...

UPDATE for me: good news. The surgeon got clean margins and also negative nodes.

But I just woke up from a nap and was dreaming about being sent on some type of game treasure hunt. But I wasn't told the rules or what I was looking for or who was on my team or how we were supposed to prove that we'd found the treasures we were supposed to find... Pretty much how it feels right now!

FrenchPorsche

Mountainmia - great news! My surgery was also 18th (don’t know why it shows up as 17th in my summary), and I am only getting news on the histology in a week. That must be a great relief to know! X

April0315

Well the tumor board met yesterday (and officially have labeled me with synchronous bilateral invasive breast cancer) and they think I might benefit from chemo before the double mastectomy. So I will see the MO on Tuesday. I was told he decides if we send tumors out for oncotype (which he probably will) and that will determine if I need the chemo. I really don't want to go down that road, but I'll do whatever is best If I need the chemo I'll do that prior to the double mastectomy. I received the copy of my pathology report a few days ago, it was 8 pages long and a bit overwhelming).

Meanwhile, I'm recovering well from the bilateral lumpectomies, and as annoyed as I am that all the ADH in my L breast was actually 17 micro tumors of ILC, I am glad I know exactly what was going on in there and getting it all out eventually.

So glad everyone seems to be well on the road to healing. Praying for low oncotype scores for all of us!

spratt5

Hello All,

Feeling frustrated and stressed out this week. Was tentatively scheduled for my BMX on 4/29. Found out the other day that the hospital did not have an OR available for that day. Now they are trying for 5/15 because my PS is going on vacation for 5 days in early May. I tried another PS in the same practice and she's out of town for almost 3 weeks! I'm starting to feel new symptoms this week; nipple leakage! It's terrifying to think is this happening because the cancer is progessing?

Motheroftwo36 ; I am so happy that you are doing so well post op! Being able to wash your hair after 7 days is remarkable! What is your process since doctors say you can't lift your arms up that high to wash it like normal?

Ladies, I am praying for all of you! I thank each and every one of you for sharing your feelings and experience with all of us here. It's comforting to know that I am not alone in my thoughts and frustrations.

((Hugs)) to you all!

EngJojo

I just saw my surgeon for follow-up after lumpectomy (quadrant). I do not have a clean margin on one surface. Two of four lymph nodes are positive. He didn't give me a stage, so I am self-staging at this point (IIB based on charts I found). I see an oncologist on the 15th of May. My port will get placed in about 3 weeks and he may do the re-excision then or may wait until after chemo. We are going to see what the oncologist thinks. He isn't thinking they will need to do more node removal as I will be getting radiation, but again, the oncologist may feel differently. I am weighing re-excision of the lumpectomy or mx. He still says there is no difference in outcome and that reconstruction couldn't get me the size to match my right. I'm not sure I would do reconstruction anyway. Does anyone have any insight in to what to do here?

Thank you as always and I hope everyone is doing well and having great path reports.

Is there somewhere on here that I can post part of my path report to get some insight into staging?

FrenchPorsche

Spratt5. I’m so sorry you have to wait so long when you’re stressed and just want to get it done. Hopefully it isn’t progressing and you get the earlier date or can find another option. Stress can make our bodies produce all sorts of symptoms. Hang in there! X

ipenelope

Motherof2-

That is a cute, comfortable looking gown. The pockets lik at a good position but you would have to have holes by the pockets to bet the drains into them.

Best of luck!!

ipenelope

Spratt5,

Im so sorry your getting pushed back and having new symptoms!! Try to keep your head up and I truly hope the next couple weeks go by very fast for you!!

Sending hugs and thoughts your way!!

Motheroftwo36

spratt5

I was never told to not raise my arms! So I just raise them intoll it hurts. I can raise them almost straight.

ipenelope

I love the night gown! I just put the the tubes between the snaps right where the pockets are!

April0315

spratt5 so sorry to hear about the push back date. Try to stay busy and enjoy time with people you love and that make you laugh. That’s what helps me when it feels like everything is taking forever.

EngJojo...best of luck to you for all you have coming ahead. My lumpectomies were not successful either as there was a lot of cancer in both breasts that was NOTdetected prior to surgery. I knew going in I would only try the lumpectomy route once then I’d go for the BMX. Fortunately (unfortunately?), that ended up being the official recommendation from my Drs. I meet with MO on Tues. I never at all thought I’d even be a remote candidate for chemo. It’s just so much to take in. Take your time, ask lots of questions, and don’t need forget to have some fun and laughs along the way.

FrenchPorsche

hello ladies! I had my drain out today. I was still getting 50-60ml output in 24 hours but they wanted to get it out. They didn’t warn me that there may be additional swelling but I feel like my ‘foob’ has swelled a lot over the day. It feels huge and lumpy. I’ve put a tight sports bra on hoping it will help. Anyone else have this and have any advice?

I’m a bit of a worrier and the nurse told me if I do need anything drained it will need to be with ultrasound because of the implant. There is only one breast ultrasound guy at our hospital and he doesn’t work full time - certainly not over the weekend. So I’m a little worried that it’s going to fill up and POP! :-

rrshannon

spratt5 Delays suck, during my first diagnosis I was delayed a few time and was told multiple times. I hope they can get you in soon if for no other reason than for your own peace of mind. I will be praying for things to get moving along in your treatment.

EngJojo Sorry you are having to go through all this and make these decisions. Here is a chart I had found for staging. https://www.cancer.gov/types/breast/hp/breast-treatment-pdq#section/_27

Re-excision or MX is a personal decision when outcomes are the similar. You have to be at peace with the decision you make for yourself. I will be keeping you in my thoughts for sure as you go through the decision process, I know for me that is the most stressful. If you want to DM me your path I can take a look.

FrenchPorsche I have had a little fullness on one side of my expander side and my PS said is was ok. They said just keep an eye out to make sure that side doesn't get bigger as they removed my last drain thought I was only getting 12cc the last couple of days. Try not to worry but difinately call if you suspect anything.

I saw my PS today and he wants to leave my one remaining drain in for a week just to be sure since that drain is on the side he had to go back do a second surgery on to remove the blood from my vessel bleed. He also might be able to remove the stitches from that side at the same time next week. Fingers crossed that next Friday is the day.

We are also going to tentatively schedule to have the right side expander put back in after my daughters graduation May 30th. Assuming my other doctors clear me for surgery by then. I am still on steroids from my adrenal insufficiency and don't see my new specialist until next Friday to see what she recommends.

My range of motion has improved dramatically since I have been home thankfully. I have had 5 doctors appointments in the 4 of the last 5 days and I am looking for a little break to rest up some more. My blood results from earlier in the week still show my red cells and well as other test are low.

Motheroftwo36

day 8 and I woke up. My mom took me to Lowe’s and it wore me out big time. Then she took me to her house and I felt ok again and was able to pick blackberries with my 2 year old. All of a sudden I became exhausted again and freezing. I laid on couch for a while and I’m still freezing. She said I feel warm. I took all my meds and it didn’t seem to help. I’m hurting so bad. Actually first time I’ve cried except for when I got out of hospital. My drain on right side hurts really bad too and drains out my side. My doctor said it looked ok after I sent her a picture. Anyone else go through this?? Freaking me out

rrshannon

Motheroftwo36 are you running a temp? If so let your doctor know.

EngJojo

rrshannon, thanks for the information. I posted some of my path results at:

https://community.breastcancer.org/forum/145/topics/871238?page=1#idx_2

FrenchPorsche

@motheroftwo Considering how well you have been doing, that does sound concerning. If you have a temperature it could signal an infection and that might also explain the increase in pain (although you might also have simply done too much). I’m I bit of a worrier, but if I felt like you do I’d definitely get checked out - if not the doctor then I’d go to the hospital.

I had a lot of pain at my drain site and the breast clinic nurse did some magic which made it a lot more comfortable for the final couple of days.

Hoping you’re feeling better already and it’s all fine. Xx

Pepper44

I had my lumpectomy on Wednesday 4/24 and my healing seems to be going well. I did have quite a bit of pain when I first woke up from surgery but they got me extra pain meds and it was quickly under control. I took the strong pain killer twice the first day but since then have just been using Tylenol and it's fine. After the first day, the lymph node incision has been fhe one that's more uncomfortable and I just have to watch how I move, but overall seems I can move my arm fine. They took 3 lymph nodes. It is numb under my arm on that side but I guess that's normal.

I got good news yesterday from my genetic counselor that my testing did not turn up any genes that would indicate strong likelihood of breast cancer, Now I just need my path report to see how the nodes looked. So far my next plan is radiation but need to hear about the nodes and possibly oncotype score. Hope everyone is having a restful weekend. I'm trying to take it easy since I plan to go back to work Monday or Tuesday,

el7277

Hi all. I had my bmx on Thursday. The soreness is not too bad... the sentinal node area is the most uncomfortable part. My node came back negative, thank you God. I have a question about the expanders...what should my chest look like right now. I assume the expa does are empty going in because my chest is dented and lumpy...and kind of flattened. Is that the norm?

el7277

Hi all. I had my bmx on Thursday. The soreness is not too bad... the sentinal node area is the most uncomfortable part. My node came back negative, thank you God. I have a question about the expanders...what should my chest look like right now. I assume the expa does are empty going in because my chest is dented and lumpy...and kind of flattened. Is that the norm?

Pommom1809

I a having my bilateral mastectomy Tuesday. Does anyone know how difficult it would be to climb the stairs afterwards? I’m debating wether I should stay downstairs for a couple of days or go up to my bedroom everyday. Any suggestions

Motheroftwo36

el7277

Yes that’s normal. Mine are partially filled and look very funky so don’t worry about i

rrshannon

Pommom1809 I was able to go up my stairs just fine. But are you having any reconstruction? If you are and they are doing a trans flap that might be a different story.

alto

Pommom, do you use your arms when you climb stairs (to hold/pull on the railing)? If so, then yes, set up downstairs.

Also, if you are not staying overnight after surgery, or react strongly to the meds (woozy, being downstairs the first few days might be safer. That's when you're the weakest and most tired.

My legs worked much better than my arms after surgery.

el7277

Thank you MotherOfTwo. I feel better knowing that!

FrenchPorsche

Hello. Just checking to see how everyone is doing... hasn’t this been a crazy rollercoaster ride?!

I’m up and down - think I’m doing ok and then next thing I’mworried about some pain or swelling I don’t understand. I wish I had my own personal BC nurse staying with me so I could have every niggle checked out and every question answered.

Hope you are all comfortable and pain free, and being well looked after. Xx

TriMama

I just caught up on everyone's posts from the past couple of days. I'm jealous of those of you that have had drains removed. It's the next small goal I'm looking forward to. And I'm sorry to hear that many of you are still in a lot of pain. I am too, and it's draining my morale, especially at bedtime.

Friday I got my path report. There was residual cancer and my nodes were clear. My oncologist recommends going on Xeloda to reduce the chance of a reoccurrence of any cancer coming back. I don't want to be on chemo, even a low dose regimen, but after thinking about it and researching it, I'm going to do it. I'm sad that reconstruction is going to take longer than I thought. I'm not happy to have expanders in for 6 months. I have an appointment with my PS this week, so I'll be able to talk to him about holding off on reconstruction while I am doing chemo. Has anyone else been given the option of going on Xeloda?

This week I have an appointment with a PT to prevent lymphedema. I hope it'll help with the swelling I've been having under my arms and in my back. Has anyone gone to PT for this?

One more question. What are you all doing for BMX bras? I bought a few random China made zip front bras from Amazon that aren't very comfortable. I have my eye on a zip up bra from Handful bras and some from AnaOno. Has anyone tried either of these or found something else you like? I need comfort if I'm going to have these darn expanders in for 6 months.

FrenchPorsche

Hi TriMama. I'm seeing PT on Friday. She just gave me basic shoulder exercises to do until then. I have quite significant swelling lower down under my armpit and around to my back the last couple of days and I think it is getting worse. It is very tender. I'm wearing a tight sports bra to try to give it some compression but I almost can't bear it. It is so sore and uncomfortable. Were you told anything re swelling in terms of wrap it tight or leave it be?

FrenchPorsche

... actually scratch that, I just took the sports bra off. I must be too swollen and it just doesn’t fit. :-( I’ve gone for a super soft stretchy seamfree bralet, which thankfully I can step into... and some painkillers. Still interested in what others have been advised for swelling. Maybe I’ve been doing it all wrong!

rrshannon

I have been wearing an older seamless cotton bra with very thin elastic around the bottom. I have two that are older and stretched out and have worked the best for me, other times I am just wearing an overside cammi which is pretty easy to get overhead now, last week I needed assistance to get it on. I will be two weeks out tomorrow. Though currently I only have one TE with out 125 cc of air and one side concaved from removing the TE so not much support is needed.

Wondering how much walking/steps everyone is getting in? I was told I could walk as long as I didn't sweat. I feel today I was finally able to get two short 1/2 mile walks in. The more I am upright standing and walking the tighter the chest muscles feel. Tylenol doesn't seem to work and I don't like narcotics so currently just deal with the discomfort. Not the worse pain I have every had so it is doable.

For my arms they stated not to lift anything heavy and for movement and range of motion I could do what ever felt comfortable. I have seen a huge improvement during week two.

TriMama sorry you have to continue with Xeloda. I feel if I had residual cells or no clean margins I would for sure continue with that course as well.