April 2019 Surgery Support Group

MountainMia - hope PT helps with the cording! It sounds miserable.

I am finally DRAIN FREE! So glad to have them gone. I hope you are as lucky soon MotherofTwo36!

So, I finally got up the courage to look at myself... yes it's been two weeks since surgery but it took me a while to build the courage. I went from a size F to totally flat. Pretty shocking in clothes, really shocking without. On the side that they took lymp nodes there is a huge dent in a long line from under my armpit in toward what used to be the nipple. It looks so strange. The non-cancer mastectomy side doesn't look like that, just flat. Wondering if that's the norm? I'm guessing it is because when they took out the drains the nurses said everything looked normal. I just wasn't expecting that. Otherwise it doesn't look as scary as I expected.

This is all such a roller coaster of emotions! Sending thoughts of peace and healing to all of you!

Hi MountainMia. I hope the PT went well and your cording has eased a bit. When I went last Friday I had a lot of gentle massage under, and along the inside, of my arm. It hurt like fire at the time but it totally transformed my mobility and comfort afterwards. Have they given you a bunch of arm/shoulder exercises to do? I’ve been doing some since the day after my surgery and she gave me a new set to add on on Friday (the new ones are running my hands up a wall so a good stretch upwards) I think they do help.

rrshannon - that sounds so scary! Hope it resolves quickly.

motheroftwo36 - drains out yet??? Hope so!

Good news on my side. Had my appointment with MO yesterday and he said since the cancer was so small (4mm) and the margins were so large that no chemotherapy will be needed. I am thrilled about this because no one wants chemo, but have to admit it makes me nervous because it's already come back once... I'm ready to do whatever it takes to not be here again! But so relieved to have great margins and the lymph node be clear. The MO plans to start me on Tamoxifen in Sept. because he said the hot flashes would be brutal in the summer. Is anyone else delaying the start of Tamox?

So, since no Oncotype being done only one more test to wait on. I'm having a precautionary bone scan next week to make sure the ache I've had in my hip is nothing to worry about.

Hello Everyone,

I am going to be having surgery on August 12, 2019. It's a ways off, but gives me time to prepare. I have read through some of the posts, and will read more over the next while. It definitely helps to hear other women's experiences. In Sept 2018 I felt a lump on my left breast, which turned out to be a cyst, but led them to find the DCIS on the right side. I opted for lumpectomy, Nov 22, in 2 spots on my right breast and that was followed up by radiation. The pathology from that surgery showed a very tiny spot of invasive cancer, which led to an MRI. The MRI showed an area of concern on the left breast and led to a biopsy. The biopsy showed invasive lobular carcinoma on the left, so I went back for lumpectomy, and lymph node removal, Feb 14. I also had genetics testing done. The pathology from the second surgery showed that I am at a very high risk for reoccurrence and possible development of other types of breast cancer. The genetics testing came back negative for any mutations. I have decided to have double mastectomy and reconstruction at the same time using my own tissue. I feel very fortunate that I have not had to have chemo, and I am on Tamoxifen for at least 5 years. I would be interested to chat with anyone who has done this surgery and know your experience. Thoughts and prayers are with each and everyone of you as you go through your surgeries and recovery.

ipenelope

Thank you so much. I am sure that everyone feels as I do, that waiting is one of the hardest parts. Definitely looking forward to putting this all behind me. I hope your recovery is going well after your surgery.

hodgepodge

So glad no chemo for you either. It was such a relief to me. I have already been on Tamoxifen since beginning of Feb, frequency of hot flashes hasn't been too bad for me, but when they hit....PHEW! If there is no harm in holding off until summer is past, I would say it is a good option. One note with taking the tamoxifen, I took it the first couple of days in the morning, and did not feel great during the day. I started taking it before bed, and that has been much better for me.

hello brave ladies. I need to quickly get something off my ‘chest’. Things seem to be going so well with my recovery but I saw my surgeon today and she’s concerned about the swelling and bruising I’ve developed since the drain was taken out. She told me to wear a compression bra - I have a post mastectomy sports bra which I’ve worn a bit, but not much since it’s been very tight and unacross my back. I haven’t been told to wear this before and did see one of the other breast surgeons last week. I wish they would have said - maybe it would have helped earlier on! I’m going back in on Friday to see if it has got any better She doesn’t want to drain it due to the risk of infection.

Then I asked about whether I’ll still be able to go on our family holiday in two weeks on Friday, which we had booked before my diagnosis. She said ‘we’ll see’. The holiday was supposed to be a nice gentle end to my recuperation before I go back to work full time. I’m so worried that I won’t be able to go. My kids will be devastated.

Anyway, I know some of you are dealing with much bigger things at the moment, so apologies for the rant.

Gentle healing hugs to all...

FrenchPorsche

I really hope that you get to go on your family vacation. Everyone in the family goes through so much dealing with this everyday. It would be wonderful to just have that relaxing time to relax and focus on something else. My husband, son and I are hoping to go away for a week in July before my surgery in August. Good Luck, I hope it works out.

Motheroftwo36 glad you are getting a second opinion I hope that you get some more information to help you make the decision that is best for you.

FrenchPorche - Has the swelling gotten better with the compression bra? I really hope you get to go on your vacation!

PomMom - Great news on your pathology!!!

iPenelope - agree that waiting is so hard.

Now my rant/question... Right after surgery while still in the hospital I had one area, my sternum, that hurt leaps and bounds more than the rest. The nurse noticed that the drain had shifted over that way and you could see the tip of it poking up almost like a third nipple (although the other two are gone LOL). And when she touched it I nearly died. When the PS came in the morning he manipulated it under the skin and pushed it back in toward my breast and it felt much better. Now, that spot is really the only thing that is still really hurting. It doesn't seem to be getting better at all, maybe worse. I noticed this morning that part of my breast looks really dented in and is killing me. Of course this is the side that had radiation 13 years ago so I'm worried that the skin/muscle just isn't going to let the expander stay. Should I call the PS? My appointment is on Tuesday. Right now I'm questioning my decision to do reconstruction. The only other person I know who has been through bilateral didn't do reconstruction and raves about how easy recovery was.

hodgepodge - I had one spot that hurt more than anywhere else and that ended up being a hematoma. If the pain doesn't get better I would try and get in sooner maybe they can help. Since I had to have the expander taken out on my radiated side when the went in to fix my bleed I don't have any advice about the expander on the radiated side. I hope yours starts to feel better and heals.

FrenchPorsche - glad the compression bra is helping it not get worse but I know what you mean about compression bra. I was wrapped with a compression bra over it and now I am alternating the two since they both bug me.

I had another 50cc removed from each side today and my left side which has the expander they took out the original 100cc of air and filled it with 250cc of saline. Today has been the best day of the week as far as pain and discomfort so I am hoping I am on the up swing. The expander was killing me with the compression as the edge was poking me terribly. Next week I go back again, they think filling the expander will help the left side but since there is no expander on the right they feel they will have to drain it every week until we go back in to add the expander on the right.

Hope everyone has a nice weekend.

I'm not in your group but I've had mine filled a few times and you should be totally good to work after the fill. You might want to take some Tylenol after as your chest will feel tight. Good luck!!

Motheroftwo36 I had my left side filled Friday, I took some advil before and felt fine after. They look the 100cc of air out and put in 250cc of saline. They also drained my seroma's on each side at same time. Was much easier than 4 days before when I only had the seroma's drained.

Yes, very good news, FrenchPorsche! Enjoy your holiday!

Tomorrow is one month since my surgery. The wounds (lumpectomy and sentinal node incision) have healed well. I'm able to massage the scar tissue on my breast now and break that up a bit, so it is softening. I had a very large lump of gunk (not fluid and drainable) under the node incision, the size of an extra-large egg. It's nearly gone now. HURRAY for that! The cording in my arm is even thicker, but some physical therapy is helping to increase my range of motion more comfortably. Overall, I'd say I'm in pretty good shape.

Today is my chemo v1.1. I tried last week on Friday and they had to stop the process. I reacted to the taxotere not once but twice. So trying again today for my first full infusion.

I looked at my pathology report again this morning (when I was up in the middle of the night.) I can understand better why my MO was rather wishy-washy about whether I should do chemo. My cancer is technically low stage I, based on tumor size and no lymph node involvement. That's a big part of how the "staging" is determined. But it doesn't take into account that it was growing aggressively as high grade, both in the DCIS and the IDC, or that I'm triple negative, or that I have dense breasts, and my tumor wasn't at all visible on the mammogram. How many other surprises could be waiting there, that they also couldn't see? After I chewed through that once more I know I'm real comfortable with this decision to go ahead with the chemo treatments.

Wishing you all good recovery and on to the next thing!