April & May 2015 Surgery Sisters

lomalley19 · June 2015

May 19 BMX with reconstruction

AudreyB · June 2015

marketing mama I had a sharp pain left side rib. Once drains were removed it stopped but would come back once in a while. Also right side I developed a bulging vein I could see from rib down to my belly. That hurt too but also went away. I called my BS on that one as it freaked me out.

marketingmama · June 2015

thanks Audrey. Did you ever find out the cause

AudreyB · June 2015

the vein was a cording issue but it went away in a week. The pain in the left was from the drain I believe as it went away almost immediately. I was in such pain from the drains but didn't realize it until they were out. Once in a while I would get a stab of pain but it never stayed long enough for me to worry about. Also expanders pressing on ribs could be a culprit.

downdog · June 2015

Welcome May sister, lomalley19. I hope your recovery is going well.

marketingmama, just trying to understand where you are experiencing your pain. Describe where you mean by pain at top of the rib cage on one side. How high up and toward the center or more toward the side? If it's at the top, it's unlikely tight scar tissue, since it is a higher location than your incision. Some women experience inflamed rib cartilage post-mastectomy, which is called costochondritis. The pain emanates from where the rib cartilage attaches to the sternum and usually affects more than one rib, so this could occur at the top of the rib cage. It is more often only on one side than both. Does your pain worsen when you take a deep breath? Did your PS examine the painful area when you asked about it, or did you ask via email/text/phone call?

It's not so much a matter of removal of what you're calling shock absorbers, than an assault on your pec muscles. Breast tissue is detached from muscle, usually along with the muscle fascia during a simple mastectomy, not from the ribs. For your TEs, your PS detaches your pec major from the 5th rib by your sternum and lifts it to create the pocket, with or without Alloderm.

As Audrey suggested, it could be a TE pressing against your rib. You mentioned you are short-waisted. Did you get low height TEs? Can you feel the top of the TE? Does it come up to the area that is painful?

mdoc524 · June 2015

hello all

Marketing mama - I had similar pain - left side - more toward side under breast - would come & go and at times get pretty bad - do found if I get up & walked around & sat up straight fir awhile it would subside! Still comes & goes but not as bad! I wrote it off as part of healing process! Sorry i don't have an answer but wanted to let you know that I had similar pain! Hope yours gets better!

MaryAgatha · June 2015

Marketingmama, I don't know if this is the same thing but sometimes (I think more so when I take a deep breath) I feel very unpleasant sharp pain on my left side toward the bottom of my breast. In my mind, I visualize my implant putting pressure on my heart, but it's just my imagination. I have no good reason for believing that. Sorry I don't have any definitive answers but if what you're describing is the same as my pain, I think it's naturally getting better, just like all other kinds of pain I've experienced since my BMX.

downdog · June 2015

Jackbirdie, sending lots of mojo your way to duke it out with #6. I will be thinking of you tomorrow.

AudreyB · June 2015

Mary, I would do the same. Get up and walk around. Rob would make fun of me saying "walk it off, walk it off".

mysunshine48 · June 2015

Marketing Mama, You are not quite a week out from major surgery. I had a lot of pain too.....I think most of us did. Your body has gone through a lot. Since you are short waisted, your expanders probably feel like they cover your entire upper body. No doubt, they are uncomfortable. Fills get easier. I have had mine for about 75 days! Yikes, that sounds like a long time and I have longer than that to have them in. Anyway, be gentle with yourself, be with the pains (unless unbearable), and give it time. I agree with Audrey, it will get better after the drain tubes are out. You will get through this!

Jackbirdie · June 2015

Downdog- you are very sweet to remember. Thank you. I'm ready! Took Jack the Wonderdog to an off leash beach today for a good run. (He ran, not me!) He runs as fast as he can in big wide circles, just for the sheer joy of running. Always very inspiring. Middle of June and not another soul on the beach! Heaven! Then took the little kitty for her first vet appt. She did very well, and won the vet over completely.

mysunshine48 · June 2015

Katy, Praying for an easy day for your last treatment tomorrow. I have #3. Hoping neither of us has any new side effects this coming week. Happy for your determination and strength. Let's do it! You can say DONE with chemo! I csn say one more!

Jackbirdie · June 2015

yes, Lynne, let's do! Thank you for your encouragement.

SuzyQ42 · June 2015

Katy,

I'm sending you chemo mojo tomorrow!!!

Suzy

mdoc524 · June 2015

Jackiebirdie - wishing you all the best for what looks like in reading the posts your last Chemo treatment - WooHoo great for you - hope SE's not too bad! Good Luck

mdoc524 · June 2015

Hello BC Friends - so I met with my MO yesterday and have to say I have mixed feelings. I like her and plan to stick with her but am concerned about maybe a miscommunication. Downdog - BS did not take all axillary nodes - only the 2 were removed that had the cancer. The MO discussed with me that they decided not to take all nodes since Chemo & Radiation would be definite if they took all nodes or left them in. Since I am so "Young" leaving the nodes in greatly reduces the lymphedema risk. The Cancer being a Grade 1 also has a lot to with that decision. I challenged her asking how they can know for sure the Stage if we do not know the total nodes and she stated she is confident it is Stage 2 - only 5mm of cancer in the nodes and also ordered a PET Scan to be sure. So I like that the lymphedema risk is lower now since my nodes are all there and I understand the reasoning that the treatment would be the same if they took all nodes out or not- I get it. What I was not happy about was that I am finding this out a month after my BMX -this was not discussed with me at all. So I may pursue another opinion on the overall treatment plan which sounds very aggressive .. still weighing everything. I do really like my MO so not sure what I will do. For now moving forward with - Chemo will start the week of 7/27 when we return from our 2 Week Vacation. I will have 4 Rounds of AC first - every other week and then 12 weeks of Taxol - weekly! And then at minimum 30 days of Radiation - not sure on how much yet. I was blown away that my treatment will take me thru Christmas! So my concern now is reconstruction. I already have my TE's in with 1st fill - I am at 260 cc's now and so tight and painful last 2 days but getting better. I cannot imagine dealing with TE's filled to max for 5 - 6 months since they don't put implants in until after Radiation is done.. UGH..

Anyone have any thoughts on any of this - value all of your opinions..

Funny - I was a brat as my MO wanted to put Chemo port in now before I leave on Vacation and I pushed them to wait until I come back and stood firm .. it is the small things that get you thru this and really did not want to bring any of this with me on my trip let alone a chemo port

Again jackiebirdie & mysunshine - good luck with your chemo's today - hoping not too bad for you!

Mary

marketingmama · June 2015

Thanks ladies for all the great advice. Sunshine, my surgery was May 21 so 5 weeks out. DownDog, I clearly didn't understand my PS's explanation! To answer your question, my pain moves around from right below the intramammary fold (I guess not really top of rib cage!) toward my back---but never goes as far as the back itself. It's only on one side of my body and as I said below my incision at the intramammary fold. I do find its aggravated by sitting so I am spending more time laying (I'm still on disability leave so have this luxury for another week).

I feel like the constant nature of the pain is shifting to be intermittent so fingers crossed this was just part of the healing.

Now wondering if it's related to the TEs....

SummerAngel · June 2015

MarketingMama, I had a similar pain, but mine went all the way around to my back (left side only). My PS said it was quite common and was the result of severed nerves and that it would gradually go away as they healed. He was right, the pain is now gone. He suggested icing the area if necessary.

Jackbirdie · June 2015

Mary- thank you for your kind support this morning. I'm in the chair now. But here I am heading out this morning. Game face on. Every article of clothing has special mojo attached to it. You all know who you are. Thanks again. You all have saved me time and time again. But this was the big one.

downdog · June 2015

You look beautiful, Jackbirdie. Gorgeous scarf. When #6 pulls you close to the edge of the black hole and the hands of the bogey reach up to grab you and pull you down, you say FU, don't even think about it, you're not getting me this time. I came prepared and I am overloaded with mojo. We're all sending you more to stay topped up throughout the day. Last serving, Jackbirdie, you are almost there!

Flounder · June 2015

Jackbirdie and mysunshine, sending you some more mojo!

Jackbirdie, the vision of your pooch running in circles at the beach filled me with such joy, I just want to get out there and join him! You've got some great four legged support there.

Jackbirdie · June 2015

Thank you Flounder!

You know they always say to care for the caretaker. For the last six months, through surgery, pain that he didn't understand, and that scared him, chemo, tears, forgetting to feed him, not getting enough walks, and he has always, always, been there for me with his willful, but intelligent loyalty. There may be as good a dog, but not a better one for me. I even got a kitty and within a week he forgave me and they were curled up together!

This is what I see when I'm down:

I feel very blessed from all the love, mojo, and animal loyalty that I feel all around me today. Thank you everybody for being my angels today. 💕💕💕

lovevt · June 2015

Jackbirdie

You look fabulous this morning! And your furry friends are adorable! I everything went as well as possible for you today!

Jackbirdie · June 2015

thank you loveVT- (btw I love it too)

I'm still here, just getting started with the actual poison. All this time so far was labs and endless Premeds.

Thanks for appreciating and not being annoyed with me for being a board hog today. I'm a captive, upset, and with the concentration of a small soap dish. This is all I can do. All tolled, today will be 6-7 hours.

AudreyB · June 2015

Mary, not sure if you can get fills during chemo, but I have to tell you, I am filled to 750cc, and the last few days I can honestly say I am forgetting they are there. I guess they have become a part of me. If you can get filled, do it. It decreases all the discomfort. The only time I am reminded of them now, besides my awesomely voluptuous shape (lol, had to throw that in) is when I go to bed. I am a side sleeper, I can sleep on my side, but kind of have to get them into position. Other than that, I can honestly say the discomfort is 99% gone.

AudreyB · June 2015

Jackbirdie, you look beautiful.

lovevt · June 2015

Jackbirdie

I am with you in spirit...as I used to do during my MRI's (I won't miss them) I would just think each minute I am in is one minute closer to the finish line! Minute by minute...I am going to attach a pic of my new little girl...she is 5 weeks old now I went to visit her on Tuesday. This will make you smile Happy

downdog · June 2015

mdoc524, I think the communication issue is with your BS. You state that the MO said that chemo & rads were a definite whether or not the BS removed additional nodes. This is presumptuous on the part of your BS. As the patient, nothing is definite. You can say no to any treatment recommendation. You are the expert on yourself and only you make the final decision. Secondly, post-mx radiation for a tumour <5cm with 1-3 positive nodes isn't ironclad. Factors that put you at a high risk for recurrence are: 4+ positive nodes, tumour size 5cm+, very narrow or positive margins, and a tumour that extends to the skin, nipple or chest wall muscles. You don't have any of these. Your path report has your nodes staged at pN1a, which means they were movable and not fixed or matted (more advanced). The treatment of bc isn't necessarily clear cut. There are usually choices and there is often no right answer. You need to educate yourself, explore all of the possibilities, weigh the risks/benefits and then decide what tx plan you are most comfortable proceeding with.

NCCN's (National Comprehensive Cancer Network – alliance of 26 leading US cancer centers) professional guidelines have 4 categories of evidence and consensus. They are:

Category 1: Based upon high-level evidence, there is uniform NCCN consensus that the intervention is appropriate.

Category 2A: Based upon lower-level evidence, there is uniform NCCN consensus that the intervention is appropriate.

Category 2B: Based upon lower-level evidence, there is NCCN consensus that the intervention is appropriate.

Category 3: Based upon any level of evidence, there is major NCCN disagreement that the intervention is appropriate.

NCCN has a 2B recommendation for post-mastectomy radiation for a pT2, pN1a tumour. So, it is based on lower level evidence and they do not have uniform consensus.

I think you should get a second opinion. You should also ask your BS how confident she is that she identified and removed all the positive nodes, as well as why she believes this. Your tx protocol wouldn't change even if you actually did have 1 more positive node. Even if the second opinion recommends the same tx plan, it is still good info to have.

If you do proceed with rads and the axilla is radiated, it does increase your risk of lymphedema, but not as much as would a full ALND. You will be at higher risk for capsular contracture and will most likely need FG to improve the cosmetic results of your radiated breast. This likely means more surgeries and a prolonged time to finish tx. Lots of women have reconstruction and rads, so you would just need to stay focused on the goal. Ask your PS about complications from rads and the risks of capsular contracture with lower/ higher fill volumes and whether low/high has an impact on better aesthetic outcomes. It's all part of your information gathering process to help you make your rads/no-rads decision.

You weren't being a brat by postponing port installation. You were asserting yourself and it is important to feel that you have some control in the course of dealing with bc. I think you have great mental control and stamina and hope you can park bc while you enjoy your vacation (portless!) with your family. Where are you going?

downdog · June 2015

mysunshine48, good luck today and hope you have minimal SEs.

Jackbirdie, hog away! Whatever you need to distract yourself and get through this. Just like you were cheering all of us on for our surgeries, we're all waiting for you at the finish line cheering away and waving.

lovevt, she is so cute. Only a few more weeks. Have you picked a name for her?

downdog · June 2015

marketingmama, if you have Alloderm slings, it could be the sutures attaching it to your muscle just below the IM incision. Stretching will help with this. It could also be tight scar tissue. Are you doing scar massage to break it up? Gentle stretching would help as well. TEs seem to be a source of discomfort and pain for many women, so it could be pressure from your TE. That's great news that it is becoming intermittent, so hopefully, it will be gone soon.

April & May 2015 Surgery Sisters

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