Anyone recently diagnosed, Feb 2014 here

Akevia

You're welcome and thanks! :-)

Jules_NY

Thanks ladies. It was crazy! But glad it's over. Going to find out tomorrow what the plan is moving forward. I hope this doesn't push my surgery back a week. 

You guys are all gorgeous!!!!! I do love that new pic meadow!!! Lovin the hair!

shycat

I was diagnosed with IBC in January 2014.  Stage IIIc, grade 3.

I had my bi-annual mammogram (due to micro-calcifications in both breasts) in November, and was cleared to return in six months.  Not long after, symptoms of IBC began to appear in my left breast, which were initially treated with antibiotics.  I had an ultrasound on December 30th, which was inconclusive, and returned a week later for a biopsy (had to stop taking my daily baby aspirin).  It was obvious right then that this was no infection and I was given an appointment for the next afternoon with a highly recommended surgeon, who relayed the official diagnosis in her exam room.  I knew it was IBC, but the words still took my breath away.

Within 10 days, I had met with a fabulous oncologist, had a PETscan and echocardiogram, had surgery to implant a chemo port and started chemo the same morning.  What a whirlwind!

I sailed through chemo relatively unscathed.  Today I'll have another PETscan to see how well the IBC responded to chemo, which will determine how many lymph nodes will be removed when I have a bilateral mastectomy on June 2nd.  If the response was as good as expected, the surgeon, oncologist and radiologist agreed I wouldn't have to have the standard "everything must go" lymph node removal, saving me from a high risk of the dreaded lymphedema.

Since I'm not having any reconstruction done, I'm hoping to heal quickly and start the six weeks of radiation in July.

jessozzie

Hi Shycat,we are here to help you with any questions you may have,we are all in the same boat,you have not told us your age? but if there is anything you need just ask..

Jess..

Akevia

Hi Shycat, sorry you had to come to this site but we welcome you! May I ask a question, why the mammograms every 6 months? Just wondering. 

shycat

you have not told us your age?

57 (turning 58 end of July), right at the average age of diagnosis for IBC. 

May I ask a question, why the mammograms every 6 months?

I have very dense breasts with calcifications that have been under close watch for the last few years.  If everything was the same in May, I would have been cleared to return to just annual mammograms... but then I got IBC.  On the bright side, I'm done with mammograms forever. 

shycat

Just heard from my oncologist that based on the results of this morning's PETscan, all three doctors agreed I didn't need to have any lymph nodes removed.  Completely resolved! Yay for the ACT chemo!

Akevia

Yay, good for you!!!

Meadow

Shycat, that is great news. And welcome to this great group of ladies, we support each other, we support you. Thanks jules I do have hair don't I!

Jules_NY

Hi shycat. It's weird to say welcome.... But welcome to the group. Glad to hear things are looking positive for you!! Enjoy your chemo free weeks and rest up for your surgery! Keep us posted!

Jules_NY

Ok Ladies,

Since the majority of us (if not all) have the chemo-surgery-radiation treatment plan I have a few questions. How soon after surgery did you start rads? and how many/how often did you get treatments? I am still working (modified schedule) during chemo, am going on disability for surgery, (obviously), but would like to work during rads if I could, at least in the beginning, assuming that is the easier part. HA!!! how is any of this EASY!!!!! LOL

Any input is much appreciated.

I think I remember someone mentioning surgery for the beginning of June, I cant find it now but if its someone here I hope it went well!!!

TY,

Jules 

Kicks

My TX plan was different than most, so can't really answer your questions.  I did chemo, surgery, chemo, rads.  It was 2 weeks after A/C til surgery, 3 weeks til Taxol, 1 week til 25 rads (5 days a week).  Rads were easy - every day I felt better (Taxol had been nasty) during them.

Akevia

Will I did chemo first I'm on tamoxifen now but I'm starting rads next week with more chemo. I didn't have surgery yet, but I will have 7 weeks of rads. You can get disability while out for surgery?

Jules_NY

Thanks for the info ladies. I guess I'm just wondering how much healing they expect after surgery before hitting the area with rads.

Kicks they were going to do the same schedule with me but changed it up. I forget why. I'm truly hoping rads aren't that bad but I guess only time will tell. I just gotta have a plan. That's how my mind works. Not sure why since I didn't plan on BC but whatev! 

Yes I will be on short term disability for my surgery recovery. Not sure if that's a NYS thing but I would imagine that would be the same anywhere but not sure.

Akevia

Thanks I'm going to look into that!

Meadow

Jules I waited about a month before starting rads, my surgeon said not till my drains came out, the last one came out the 3rd week, then I waited a week just as a breather. I hope you find rads to be easier than the rest of treatment, The treatment itself is brief, maybe 15 min if you dont have to wait. I was able to just wave at the girls behind the desk, they knew me after one day, that was my check in. They gave the techs a heads up I was there, I changed into a gown ( they let you go in do it without escort ) took 3 min tops depending how hard it was to get out of my own clothes ha! then the treatment was maybe a minute actual beam time, 20 seconds beam, re position the machine, 20 seconds beam, re position, final 20 seconds beam I am done. I had 33 treatments, 5 days a week. Yours of course may be different probably will be different, but I dont think it will take much time. Do you work close to the treatment center? I think you said you did once. I know a lot of people worked during rads, I think you will do great if thats what you want too.

Lmoore1

Hi Jules,

I was diagnosed in September of 2013, 2 1/2 months after having my 3rd son. I did 4 rounds of AC and 12 rounds of Taxol and herceptin. I had my mastectomy on Feb 26th and started 31 rounds of radiation on April 10th. I just finished on June 4th. I had a two week delay due to badly burned skin when I only had 3 treatments left. I too took short term disability for my surgery but worked through radiation pretty easily. I did it on my lunch hour. Hope all goes well for you and hoping for a great path report!

Kicks

My Center gave you 'name badges' to wear for all appts.  For rads, we were assigned a locker and given the key for it.  I always got a fresh 'Super Woman Cape' daily but I only got a fresh terry cloth robe weekly though I could have daily.  

The biggest surprise to me was the radiation room.  There was no closeable door at all.  The door into it was a totally open area that was probably 10 ft wide and 8 ft tall.  It was a large round room which was designed so that no radiation could escape it.

Meadow

Hello LMoore, nice to meet you. There is a chemo group thread for those who started chemo in Sept 2013, there is a lot of information sharing, nice people too. They have also started a facebook page which you will be invited to join. Dont feel pressured to do that if its not your thing. I have found both to be a source of information, strength, humor.

Speaking of information, strength ,humor.......hello kicks! I wish we were closer geographically, I would hang out with you at your barn today.

Jules I am excited, well, thats probably not the right word.....anxious and hopeful, for your next phase of treatment. Surgery is close at hand, We are here for you.

Meadow

Akevia You are having rads now, then more chemo? how are you?

Shycat your previous post said your surgery was June 2, how are you doing?

shycat

Survivor's anthem:  I'm still here! 

I was home about 24 hours after the bilateral mastectomy with two drains, looking forward to not being wakened every 2 hours by a nurse checking my vitals, etc.  Happy to slip into my satin PJs and ease into my comfy bed with a wedge pillow and a pile of bed pillows.  As a lifelong side-sleeper, I was surprised at how well I slept propped up in bed on my back.  Might just have to keep that wedge pillow. 

The weekend was emotionally rough, as I was so tired of being uncomfortable and discouraged by the drains.  I cheered up immensely after the one-week drain check on Monday when the nurse removed the right drain.  One down, one to go!  Amazing how much difference that made.  Hopefully this Friday the left one will be removed.  Can't wait to take a shower!

Akevia

Hello Meadow, I'm all over the place emotionally. I was starting rads on Monday then they called to reschedule for Wednesday and I'm not to happy with that a matter a fact I'm pissed. I'm in pain and my right arm is hurting from the lymph node being swollen and I wanted to started rads ASAP and they said it would help with that. I called my surgeon office this morning and I couldn't stop the tears. It was one if those cries where you can't catch your breath. The women knew me from all the times I went and call the Doc and she just listen she was so sweet. I just want this to be done, I have another PET scan tomorrow it's for my rads onc but I had one already and I don't know why he delaying my rads for another one, and I could have started this week. The plan is rads and chemo together.

Akevia

Shycat I'm happy your surgery went well and I pray for you a quick recovery. 

Jules_NY

I'm am very eager to move onto the next step! Shoot, I'm eager to move onto next year!!!!! Unfortunately I don't work near my treatment center. I work about an hour away, my treatment center is 2 miles from my home. So I wouldn't be able to go during work hours for rads. I probably should just take a deep breath, be patient and meet the RO first before I start planning out everything, I just can't help myself. Started to get neuropathy in my right foot this week, we'll see what happens when I tell them on Friday. 

Lmoore congrats on being done!!! 

Shycat hope you have a speedy recovery!!! 

Akevia sorry you are going through all of this!!! I know that cry! Cyber hugs to you!!!!!

Akevia

Jules >>>cyber hugs<<< thanks! :-)

Lmoore1

Jules I know how you feel. It's nice to be done (except for herceptin every 3 weeks) but a little nerve racking at the same time. Hang in there! 

Thanks for the info Meadow! I will definitely check it out. 

amarantha

Akevia : So sorry to hear you were suffering emotionally. I hope that by now you are feeling a little better ? rads started ?

Jules : Like Akevia, I had my radiation at the same time as my last six weeks of chemo (25 rad treatments and 4 chemo). Pretty well tolerated, but by the fifth week the skin was starting to break down. It healed in time to have surgery.

I'm rooting for you !!

Jules_NY

Hi Ladies,

Just checking in. In the middle of my post steroid insomnia attack. I either can't fall asleep or can but wake up at 3.

Finished tax #10 today. I can't believe it! My neuropathy is getting a little worse but they didn't change anything #11 and #12 are on schedule unless it gets unbearable. they are happy that the symptoms get better just before the next treatment, they said its a good sign that it will be temporary. Should be getting a call to schedule my RO appt and am looking forward to that   so I can get some sort of idea of a treatment plan. My boob seems like it is completely back to normal which makes me extremely happy! Surgery is still on for 8/11. But I noticed my follow up with the sutgeon is 8/28??????? I gotta chevk on that! There is no way those drains are staying in for 17 days!!!!!!!

I hope all is well for everyone else. Including those who are done and moving on with life after treatments!

Love and hind

Jules

Kicks

Do not be in too big of a hurry to get drains out!  Yes - they are a 'bother' but the seromas that can develope if taken out too soon can be a lot worse to deal with.  1 drain was removed at 2 weeks with no problem at all, other was removed at 4 weeks and a large seroma developed.  That seroma was still showing as 6 cms on CAT scan 12 weeks later.

Akevia

Hi Jules that's great you're almost done with taxol and your boob is feeling normal again. That's a awesome feeling, and goodluck with surgery next month!