Anyone recently diagnosed, Feb 2014 here

Meadow

Hello Jules, Glad you are getting at the end of chemo. You should be very proud of yourself, you have been very strong. I have to say I hated the drains, but I just took it one day at a time. Do you have a hoodie that zips, with pockets? I had a lightweight one, and I wore it inside out so the pockets were next to my body, and I put the drains in them. I found that to be fairly comfortable, I have since looked on websites and see there are pouches that are like shoulder bags, and of course saftey pins work too. You will wrestle them for a couple of weeks probably, so just settle in with them! Thinking of you, Meadow.

Jules_NY

Another steroid insomnia episode. Finding comfort in posting!

Thanks meadow! It's really starting to hit me hard lately. Since tax #9 I've been rapidly going downhill. Mostly aches, worsening fatigue and neuropathy. Bleh!! 

Akevia. Thanks for the kind words. I hope you are doing better than the last post!

Kicks, thanks for the info. I def don't want the drains out sooner than needed I just think waiting 17 days for my first post op check is a little crazy. If they stay in longer than needed that will increase my risk for infection which will delay my rads. 

Finally have an appt with the RO. So over the next 2 weeks I'll have a breast MRI, BS appt and RO appt, I'll be loaded up with info and a plan for the rest of this awful path. Writing down new questions everyday. They are gonna LOVE ME, LOL!!

Hugs to all, Julie 

Meadow

I agree 17 days is too long for your first follow up. I had 3 drains, one came out at my first followup which was 1 week post op. Tell them you want to come in after one week.

Kicks

17 days to wait for a first appt is excessive, in my opinion.

My TX plan was different than most here - I did neoadjuvant and adjuvamt chemo so my 2nd drain was still in in when I started Taxol which was 3 weeks post op.

Jules_NY

No visible cancer cells on my MRI!!! Woohoo!!!!!

Akevia

Yay Jules that great news. Congrats!

Meadow

Jules I am grinning from ear to ear for you! so happy. I know you got this.

Jules_NY

Thanks ladies!!!!! Couldn't get through this without you!!

So my new surgical plan is left MX and lymph node dissection now with no recon. And proph right MX during recon next spring. This way for my good boob it's only one surgery and no scar to deal with at recon. I'm ok with that! Oh and my drains will be monitored and removed by the NP's and the BS follow up will remain 17 days post op.

positivenegative

Hi Jules,

Been a while since I have been on BCO IBC.  I saw your post and felt the need to reply.

We have the same ER+/PR-/HER2+ and same txs *grin*.  btw +/-/+ is not very common just like IBC. My IBC metastasized  to my lung and rib shortly after dx.   I went through the same treatments you did a year ago and rads. I passed my 1 year cancerversary 6/5....I am still in tx and will be for the rest of my life *at this point in the tx plan* as a mets patient now...thank god for the meds.

Feel free to PM anytime...I'm a NYer too Let me know how AC worked for you...how many more taxols....# of planned rads txs...and what hormonal therapies are in the plan.

Sending healing vibes to all the IBC BC sisters.

shycat

Yesterday I had a 4-month follow-up appointment with my GP.  I had expected the usual exam and blood draw, but he said I looked great, that I'd had enough doctor appointments lately and he wouldn't mess with all that again until October.  He just wanted to talk, make sure I was doing as well emotionally as I appeared to be doing physically, and was there anything at all that he could do for me.  Oh, and did I still have his personal cellphone number, call anytime, day or night.  

I love my GP.

My RO said this was the week I'd start seeing skin changes.  Oh joy.  RT #6 took a long time because they had to re-calibrate and re-mark my chest.  Since I hadn't gained or lost a significant amount of weight since Friday (RT #5), it must have been a change in swelling.  I hope today's goes faster.  My shoulders were so stiff and sore after yesterday's extended session.  Ok, that's it, my one whine for the day. 

positivenegative

Hang in there shycat.  Skin changes can be very painful.  Hope you have been pointed to creams and domboreo soaks by your RO.  They worked for me and 8 wks of rads <-- that was the color of my skin weeks 6-8 due to rads skin breakdown.  It will soon all be in the rearview grrrl.

Good luck with it.  Keep the posting.

Jules_NY

Shycat, you're GP sounds amazing!!! Sorry to hear about your RT side effects, I hope that you can find some comfort somehow!

pos/neg: thank you so much for reaching out! 

Kicks

If you do get major burns, AND your Dr approves, I second the Domeboro soaks.    Domeboro is an astringent so it is drying so can be contra indicated while still doing rads.   The morning after last rad, I woke up to the entire irradiated area 'open' and 'flowing'.  No signs of healing at all until  Dr's RN  suggested Domeboro soaks.  As soon as I started the Domeboro, healing started.  I don't remember the date I started Domeboro but it was about 2 months after burn showed up (early March)  and the last scab over the deepest area (under arm) came off on June 29.

I never had 'marks' after Simulation.  I had 4 tattoo dots that were used throughout rads.

Jules_NY

First off shycat I hope you are feeling better. And to all the IBC sisters I hope you are doing well. 

Just got home from surgery. And feeling a lot better than expected!!! Staying on top of the pain meds which helps a lot. The most annoying part is the stupid bra and drains., Bleh. And it's super weird to see no boob. Hoping I get over that soon but doubt it. 

Would love to hear an update from everyone. Miss you guys!!!

Akevia

Hi Jules, happy you're feeling okay after surgery. Hopefully I will had my surgery soon waiting on a call back from surgeon's office to book a date. Just finish with radiation and it wasn't so bad. My tumor is still a little big and my surgery will be challenging but hopefully successful. :-)

Meadow

Jules I have been thinking of you all day and I pray everything went well. Be patient with yourself and rest, and know that we support you. xoxo

Meadow

I am doing good, approaching my one year cancerversary this weekend. I feel good. hugs to everyone

Jules_NY

Akevia! I have been thinking about you. I couldn't remember if you were doing g radiation before or after surgery. I hope you get some news soon and I hope things end up not being so complicated! Please keep up posted on your surgery date! 

Hi Meadow!! Thanks for the well wishes! My sis is here with her daughter helping with the kids. So I plan on getting lots of trar!!!! One year for you.....wooooohooooo! How are those locks coming in?????

shycat

Had radiation #21 today (yay!), still just a bit pink.  The incision is still a bit open in one spot (happened last week), so I'm still spreading Neosporin on there as directed by my RO.  The sessions have been quick, without further need of re-marking etc., so my shoulders haven't been hurting as much.  All in all, doing great!  Will be seeing RO tomorrow, so I hope he agrees. 

 

Meadow

Keep up the good work Shycat

Jules, I am so glad your sis is in to help out, what a gift of love and also hopefully some fun for all. My hair...I am happy to say it is good, but I am keeping it waayy short purposefully! I have loved the freedom from "Big Hair" and love the easy of super short. Never had a pixie cut in my life but I am rocking one now. Thinking of you with super healing thoughts.

Meadow

Akevia, yes, keep us posted about surgery dates.

Traveltext

Just found this thread and since I was diagnosed with IBC in February thought I'd tell of my experience to date. 

After my ultrasound discovered invasive ductile cancer (nipple plus two lymphs) I pretty soon developed IBC so my onc decided that neoadjuvant treatment was the way to go. I immediately started chemo and had three treatments of FEC followed by three treatments of docetaxel. This worked well, produced virtually no side effects, and it prepared me well for the mastectomy which I had a couple of weeks ago. 

After the surgery (all breast tissue plus 23 nodes removed ) I was informed that the pathology showed that while the IBC cancer had gone the IDC was still positive for cancer. Fortunately only 2 of the 23 nodes were positive, so it appears that the tumors have been beaten. 

Now  I'm booked in for rads in a couple of weeks and this should ensure a full recovery of the current bout. 

Tamoxifen will likely be recommended since I'm HER negative. Don't know if I want this treatment, since I'm a guy and don't want to be fat, moody, impotent and have hot flushes for five years. Might change my mind, though, if I decide that this final treatment is worth extending my 63 years of life even further than the other treatment. 

I have to say that I'm really impressed with the fine spirit shown in this thread. 

Akevia

-Meadow Yey one year that's exciting! Congrats! 

-Julez I had rads before surgery and my surgery is scheduled for the 23rd of September. My surgeon wants to wait 5 weeks after rads. 

- Traveltext welcome to the group and I'm happy you found us. You seem to be almost finished with treatment. Rads shouldn't be that's bad but I did have mind before surgery so that might make a difference! Well good luck with everything! 

Jules_NY

Akevia, glad you got a surgery date! I hope you can enjoy some cancer treatment free down time!

Traveltext- welcome. Sorry you have to be here. Glad to hear your chemo was tolerable and that you had a good response and that you are recovering from surgery. My rads start in about 4 weeks. Did they test for estrogen markers? For me only 1-4% of my cells were estrogen receptor +. My MO told me that they used only treat if it was >10% but now they treat everyone who is positive. He also said that if I cannot tolerate the tamoxifen that he'll take me off. Best if luck in your decision!!!!

Traveltext

Thanks for the welcomes. I guess nobody really wants to be here, but at least there's lots of good cheer and helpful advice. 

I'm ER + but don't think they've tested for markers yet. As you say, they do recommend tamoxifen treatment for positives. Best take each step as it comes rather than freaking out too early!

Meadow

Traveltext, welcome. You will find support, information, laughter and share tears happy and sad here. We support each other , and we support you. 

Akevia...........Sept. 23. glad you have a date.  It will be here soon, and you can do this.

Jules, hoping you are doing good in your post op recovery, I am sure right about now you want to yank those drains out. Thinking of you.

Today is my one year Cancerversary. One year ago i was diagnosed with the beast, and after great medical care and great loving support and prayers I am happy to be NED. Thanks for sharing this day with me. Love you all

Jules_NY

MEADOW!!! Crying for 2 reasons!!! Your cancerversary being NED! From the moment I "met" you I've found amazing comfort in your positive steps!!! And the second thing is YES I want to rip these drains out. They are sooooooo annoying!!!! One drain is hovering between 30-35ml/day and it can't come out until it's less than 30. It's taunting me!!!!!!

Meadow

lol Jules I KNEW the drains would be driving you crazy! They are the pits! Thank you and thank you all for your kind words and support!

Traveltext

I too hated the drains and had them removed one week after surgery after the daily flow was about 60ml. However, for the past two weeks, the fluid is continuing at that rate and I've had to get syringed out each week. Doctor says this can go on for a while in some people, especially those who have had a mastectomy and an auxiliary clearance. 

So, you either carry the drain bag or get syringed it seems. Either way you can have trouble with radiation treatment with too much fluid so I'm hoping for a big reduction before I start the rads in two weeks. 

This is mainly an issue for those undergoing neo adjuvant treatment where the surgery follows the chemo. The other way around would likely see the surgery excess fluids long resolved before radiation began. 

Jules_NY

yay 25ml, one can come out tomorrow!!! The other is hovering around 50. On another good note my post op path report showed no active cancer cells!!

Travel I hope you don't need to get drained for much longer. All of this is awful!