March 2015 Surgery Sisters

eaglemom

Thanks LRGinger. Unfortunately I don't yet have a MO. It will likely be a couple of weeks until I can even speak with an oncologist

. I'm having a hard time with the waiting.

CaliRN

FE princess-

My first fill 2 weeks after my b/l mastectomy was 50 cc and didn't bother me at all. The 2nd fill was 100cc and I was really uncomfortable for a few days. Some say that fills get easier after awhile but for me they got more difficult. They didn't hurt during the fills it was afterwards my back muscles would get really tight and my pectoral muscles would spasm with any movement. But after a couple of days it would always get better. Good luck on your first fill!

Jenga60

you guys rock! I'm 3.5 weeks post surgery. Recovery has been going well. But last night hubby and I both got food poisoning. I couldn't keep the smallest amount of water down for 12 hours... Just able to sit up in bed now without feeling sick. The worst (sorry for the description in advance( was it was so violent, it really pulled at my scar hoping I might be able to keep some Advidown soon.

Only 5 more days until I get my results!

Sunflowercat

Jenna, so sorry about your food poisoning! That is the worst!! Hope you can get some relief and fluids down soon.

ERNurse21

so it's been a while since I've updated on here. I am nearly 3 weeks post BMX without reconstruction. I got the drains out after one week & that made a TREMENDOUS difference! Slept better, moved around better, felt better! Biggest issue now is the nerve pain under my arms. Describing it as a bad sunburn is SPOT-ON!! I work 12-hr shifts in the ER & about halfway thru it just feels like sandpaper under my arms and just raw.

I started back to work last weekend & it has gone pretty well. I know my limits & have a great supportive staff that works together. I have noticed the muscle twitching a lot. Seems to be getting less & less but it is still a very strange feeling. Not really painful, per se, but very odd. That and the "zingers" especially in my left side right about where the nipple would have been. That hits hard - like someone giving a "purple-nurple" - but it's just a second or two. Still kinda takes your breath sometimes!

I start chemo on Monday and will do 6 rounds of Taxotere/Cytoxan, one every 3 weeks, followed by hormone blockers for at least 10-15 years. Really my biggest emotional issue right now is weight gain. I know it may be vain or whatever but it just is really bothering me. From initial discovery of the lump in January til now I've gained 20 lbs despite healthy eating and frequent exercising. I know a lot of that is due to the overwhelming stress of diagnosis, waiting for results/plan/surgery/etc, figuring out finances (I'm a single mom & therefore sole income), and all that. I try to take a breath & remind myself to just get through this part, this season, do what I can, and then get back to "normal". It's just hard reading all the stats and such where weight gain is most common and expected outcome. My BFF is so patiently & sweetly reminding me to just take one step at a time and I really am trying.

eaglemom

Hi ERNurse. I'm glad things are going well for you. You're one week behind me on surgery, but ahead on treatment plan. I had the exact same sunburn/sandpaper sensation on the back of my arm. It was worst at about 2 to 2-1/2 weeks after surgery. No matter what I wore or did, it felt like I had rubbed the area raw with sandpaper by the late afternoon/evening. I'll be 4 weeks out on Monday the 20th and that sensation has been totally gone for almost a week. I still get occasional nerve/muscle zaps but they are not too bothersome. I have also had quite a bit of itching as well.

It's good to see someone else who returned to work soon after surgery. I think you beat me by about a week! I do housecleaning part time and returned to work 3 weeks after surgery. The physical part of my recovery has gone about as well as I had hoped it would.

I still don't have my pathology report and it will be at least another week (probably more) until I can even meet with and talk with an oncologist. For me, the waiting has been the hardest lately. I got a tiny bit of info back from pathology that 6 out of 12 of my axillary (I think) nodes were involved. No further details, so I don't know what's next, but I expect chemo and radiation and then hormonal therapy.

I'm getting quite concerned about the financial strain the added treatments will cause. For radiation, I will have to travel about 4 hours from home and stay at a cancer lodge M-F. Obviously, that means I won't be able to work. Since I'm self employed, no work means no pay. I hope I'll be able to work through most of my chemo. My clients are all great and have been very supportive. I find that working really helps me to stay positive and keep active.

I will probably be seeing you on one of the spring chemo threads as we move into the next phase of treatment.

Kornelia

Valentine99

Lots going on with everyone! Forecast I'm so sorry about your mom.

I have landed back in the hospital 3 weeks post BMX with an infection on the left side so they replaced the tissue expander. Get to spend the weekend in the hospital.

I hope those of you still waiting on reports get good news.

PhillyEmma

Valentine, so sorry to hear of your infection! I'm wishing you a speedier recovery.

I got my copy of the pathogoy report and it looks like my BS on tested one node with the SNB and not several. It states that one node gave a strong signal which showed no cancer but they did not get any other signals therefore no other nodes were biopsied. When I met him this past week he told me he would see me in a year and there was no need to follow up with the oncologist because all the breast tissue was removed.

I admit that I do not feel as confident about my SNB with only one node being tested. Has anyone only ever had one node tested?

Update: (maybe the one node is ok.. I'll call my BS tomorrow and f/up with my oncologist)

Found this on this site:

"In sentinel node dissection, the surgeon looks for the sentinel node or nodes, which is the first lymph node or first few nodes that filter fluid draining away from the breast. If cancer cells are traveling in the lymph system, the sentinel node is more likely than the others to contain them. So, rather than remove 10 or more nodes, surgeons remove only the one node, or a cluster of two or three, which is most likely to have cancer. If the sentinel node is clean, chances are the other nodes are clean, too."

AudreyB

PhillyEmma, I had omly sentinel node (one node) removed and tested. Hope this helps.

PhillyEmma

Thank you, AudreyB for the reply. I appreciate it.

mysunshine48

I had two nodes removed and were clear. However, have you had an Octotype test or a Mammoprint test? Even with clear lymph nodes, these tests tell you the likelihood of recurrence somewhere else in the next 10 years. Because of the biology of my tumor, and test results, my doctor strongly suggests chemo. I will do it - insurance. I do not have to have as much as if I had cancer in the nodes. But, you never know when there could be a few cells that escaped through the bloodstream. I want every last one out of my body!

Something to check out! Be pro-active! It is your life! Just my opinion.

LRGinger

I also had 2 nodes removed, both clear. However, my Oncotype score came back in the moderate risk category and the MO recommends chemo.

PhillyEmma

I did not have the ocotype but I did talk to my BS this morning. He did state that my one node lit up like a "Christmas tree" and he felt very strongly as it reflected no infiltrating cancer that there was no need to take 2 or 3 more nodes. In addition, he did confirm that my stereotactic biopsy back in January which diagnosed me with DCIS was ER+/PR+.

Therefore, I told him that I made a follow up appointment with my oncologist for next week to discuss tamoxifen. Despite the oncologist telling me when we last met back in Feb that if I had the BMX I would not need any further treatment if the SNB came back clear. It's so confusing when your hear so many people go on tamoxifen in my situation and some don't. Guess I'll wait to meet with the oncologist.

breastfriend2u

May I ask you how the cleavage differs in the gummy bear anatomicals? I just had a BMX 1.5 weeks ago and this is so new to me? I have natrelle tissue expanders in right now in X full profile that can be filled up to 500cc and PS wants to go toward the antamical teardrop but I am concerned of no upper pole fullness. I also don't want to go to big as I wore 32 B bra before - c at largest. I just want perkier if possible post mastectomy . I still have drains in me right now and its poking through my armpit as I have very thin tissue. Not sure how to work this thread as I am brand new. Haven't had first fill yet either welcome to any tips.

Fe_Princess

Hey Breastfriend2u, you can also post in the Breast Reconstruction (which has heaps of sub topics). You will get more responses there too. How are you feeling from your surgery?

robinblessed54

I had my EX 7 weeks ago with Allergan 410 gummies with 475cc. I have upper pole and cleavage, which I never had before. I am very happy so far.

CatsRus

Hi all. Thought I would give you an update. First I again have to apologize for not being on the board more and offering support... I have been up and down emotionally and sometimes can't bear to read anything to do with cancer. Having said that thanks to reading this board, I plucked up courage to speak to my doctor about my anxiety and the panic attacks I had experienced, though mild ones I think. My doctor prescribed an antidepressant and something to help me sleep and to take if I experience more panic attacks. I cannot believe the difference it has made! I can function pretty much normally, my stomach isn't in knots continuously and the sense of being scared has gone. The panic attacks have gone too and I rarely need anything to help me sleep now. I do still take the daily antidepressant. I urge anyone who is having a hard time to talk to their doctors, I should have done it sooner but thought it was a sign of weakness, I kept telling myself I could handle this when obviously I couldn't. Right so, head sorted... back to the breast! I had MX with SNB on 3/12/2015, 1/2 SN was positive. On 4/16/2015 I had ALND with 9 nodes taken - all negative! Yeah! No issues with my arm so far (touch wood). The incision right in the arm pit is in a very awkward position and it is very irritating and somewhat painful but manageable, it hasn't slowed me down too much. I have an appointment with an MO this week to find out the next step.

I wish you all well and thank you for your support. I again apologize that I haven't been able to offer much support in return, hopefully, now I have my head in a better place, I can do better.

gypsyjo

CatsRus - I'm so glad to hear that you are getting all the treatments you needed to get through this. It is an ordeal that has long lasting impacts. I also took drugs for anxiety for the first time and it definitely helped. The hardest part is realizing that help is needed and asking for it. So glad for you that you took that step.

Jenga60

it's been a while since I posted. I got my path results from my mastectomy

Stage IIIa 8/22 nodes involved, ER+, PR+, HER2+.

It's a lot of things to research ... Meeting with an oncologist on this thursday to find out the full game plan, but know at least 6 rounds of chemo, drugs for HER2 and Tamixofin for at least 5 yrs. kind of scary but I know I'll get through it.

Got the okay to get my Prothesis fitted.. .

Put my name on the list for reconstruction... Understand here in NS we can expect 2-5 years before getting to reconstruction.

Ordered a bean-a-boob for running. I understand they are more comfortable for sports.

Thanks for listening

eaglemom

Valentine, I'm so sorry about your infection. I hope they were able to take care of it and you are feeling better now.

Thanks for the update, CatsRus. I think that recognizing when you need help and asking for it is a sign of strength, not weakness. I'm glad you got the help you needed and are feeling in a better place emotionally now. Our bodies can't heal physically if we're not getting the rest we need and we're too stressed emotionally. Congratulations on clear nodes! I had a total of 12 nodes removed but from the same incision as my MX. I had the most discomfort in the axillary area. I think having a key area of the lymph system dissected is pretty hard on our bodies and it takes some time to adjust. I still have some tightness in my underarm (cording) and a little cording in my abdomen as well. I've been doing gentle stretches and it's improving gradually. I hope you have a good meeting with your MO and get a plan in place for further treatments. Are the cats in your avatar yours? They remind me of our two orange brothers and their torbie (tortoiseshell tabbie) mom.

Jenga, I'm so sorry about your nodes. It looks like your final diagnosis is pretty similar to mine. I don't have mine officially diagnosed yet, but it looks like stage IIIa as well with 7 nodes out of 12. Mine came as a bit of a shock and I'm still getting my head wrapped around the whole new game of extra treatments. I expect we will both have pretty aggressive treatment plans. My MO consultation will be May 6th. I expect we'll both be starting chemo in May. If you haven't done so yet, you will probably want to post on the May chemo thread. There's one other stage 3 sister there in addition to me, so you'll be in good company. All 3 of us are from Canada as well. I got my hair cut on Saturday (donated over 12 inches to make wigs for kids with cancer) and went shopping for some hats and scarves from the thrift store. I also found some pocketed tank tops in the sportswear section, so those will work well when I choose to wear my homemade microbead or cheap department store foobs. I hope your MO meeting goes well on Thursday

DiveCat

Jenga & eaglemom,

Sorry to hear about the pathology for your nodes. I know not news either of you wanted, but I do hope your oncologist appointments go well and you get a game plan in place.

Jenga, I am in Alberta but I understand the wait for delayed reconstruction here can also be long, 1-2 years even to get in to some first consults for some plastic surgeons. I thought having to wait a few months for my PBMX/immediate recon was long. Good idea to get on that list!

breastfriend2u, I have had both rounds and anatomicals. I like my cleavage in my anatomicals better (and my anatomicals better all around). It looks more natural, and is also a bit closer together. Took some time getting used to having cleavage even while naked, ha. I am very happy with upper pole...it looks natural but there is some fullness there. I was a 30E before surgery, and remained a 30E after my rounds...probably about a 30F now, but it still looks the same. You can't really determine what implants to get by what you want for cup size though...implants are wider, have less projection. Even though I need the same bra size, I need shallower bras and I LOOK smaller both naked and in clothing in my opinion. I don't mind that at all, but do keep in mind reconstruction is a very different process and implants re chosen based on you measurements, etc. It is better to bring in photos of what you want to your doctor, than to tell him a cup size..many docs don't even understand cup size...remember most women are in the wrong bra size to begin wtih so really most people don't really understand cup sizing well!

CatsRus, welcome back. Not being up for being around here is totally understandeable. I have been having a hard time being here too as its too difficult to get all the reminders while my mum is not doing well. She was sent home from hospital finally and is recovering at home, but we don't know what is next. She was reluctant to go back to chemo even with her mets dx last year (she did chemo at original dx in 2005/2006) and after this reaction to chemo - which was pretty severe and life threatening - she is worried about another experience like that or worse and is not sure what she wants to do. At this point they can't put her on anything new anyway...still not stable enough. Anyway, I am VERY glad you went and talked to your doc and the antidepressants are helping! I know they really helped my mum too. Very good reminder about not hesitating to talk to your doctor

CatsRus

Thanks all. I hope sharing will encourage anyone else who is struggling emotionally to talk to their doctors. Not sure what the next step will be for me but I've looked at wigs ('though haven't tried any on yet) so I am preparing myself. I have also signed up for a 'Look Good Feel Better' workshop next week.

When I was asked about breast cancer in the family, I realized I didn't know what my maternal grandmother died of in her '70s (I was quite young) and also a maternal aunt who died aged 43 before I was born. I sent for their death certificates and they arrived yesterday - neither had cancer so definitely no family history. (My mum died in January aged 94, she had 4 sisters).

Eaglemom - yes the cats are mine . They are orange tabby females! I also have two very large brown/white tabby males. All are rescues. The males were both adopted as adults, the 'girls' came from a kitten rescue group and were less than 2 lbs when we brought them home. They walked all over the 'boys' from day one and still do! They make me smile everyday!!! I hope the cording you are experiencing resolves itself soon and your MO meeting goes well.

Good luck to all as we move through this journey... take care all.

Valentine99

Well, my reconstruction journey has stopped for a while. Saw my PS today, and I'm just not healing well even after replacing the TE 2 weeks ago. I can't get fully expanded before radiation starts, and I was extremely worried about trying to get it done without splitting. So for now I'm sticking with the 300cc s they put in at surgery, and will decide after radiation if I will have flap surgery for reconstruction or just abandon reconstruction altogether. I am very much at peace with this decision. Breast cancer is teaching me patience and that I can't always plan things out LOL

I did ask him why just the one side was being difficult, and had read that other people have the same issue on their cancer side. He said that they usually see one side that is more difficult, and it is always the cancer side. I thought that was interesting.

CatsRus

Hi all. Just checking in, I am now on the May chemo sisters thread, chemo starts May 14.

Best wishes to all....to those doing well a keep it up and I hope it continues, to those having difficulties, I hope things improve until we are all doing fine.

eaglemom

I'm getting ready for my MO consultation on May 6th. I'm also on the May chemo thread so I'll see you there CatsRus. I don't have a start date for chemo yet and I want to get a port so it may not be until a couple weeks. I expect mine will be pretty aggressive treatment. I hope all of you are doing well and adjusting to the next phase of life.

CreoleGirl

Add me. I had a unilateral mastecomy of my right breast on 03/02.

CatsRus

I shall watch out for you on the Chemo site, eaglemom. Hope your appointment goes well. I am doing okay, I went to a Look Good Feel Better workshop this morning, it was lots of fun and we laughed a lot plus they gave us great information on make up, cleansers, hair alternatives, etc. And we got lots of goodies! I highly recommend it.

eaglemom

Welcome CreoleGirl!

Thanks CatsRus. I'm glad the LGFB workshop was fun. I may get a chance to go to one of them when I go down to stay in Victoria for rads in a few months. I don't think they typically have them near where I live. I will have been bald for a while by then so maybe it will be good timing to make me feel better.

CatsRus

eaglemom, there were women in all points in chemo. There was me starting next week, the lady next to me had just finished, the next lady had just had one chemo session. I didn't talk much to the ladies sitting across from me too much, but some had hair and some didn't. I think ideally it's better to do either before or very early into treatment, but whenever it was a fun 2 hours and the pack of make up, etc., was well worth it on it's own!

I have an appointment with an RO next week for an opinion because of that one pesky node.