I have IDC --

AJ62

Hello to everyone.

I'm AJ and recently diagnosed with IDC. I feel I have Paget's Disease or possibly Inflammatory Breast Cancer as the tumors I have are painful, left breast itching, redness, swelling as well as my nipple is inverted. My Doctor prescribed a special cream that is made for me, to help that I use on my left breast to help with the symptoms, which helps quite a bit. I wanted to scratch my breast and nipple off before this cream! 

I have had two lymph node biopsies. I get the second test results back next week as when the other Doctor tried, he did not get a good enough sample and this time a marker was placed and two good samples were taken. 

I've had the MUGA Scan, Breast MRI and  PET scan. Then my insurance was messed up as I had changed plans before finding out I had breast cancer and I had to wait which frustrated me as well as my Doctors. I had to switch back and it took a while to get authorizations. 

The PET scan had showed up the left lymph node again, so as I said I am now waiting for those results and a date as to when I start my chemo schedule. I should know about the results and my schedule next week. 

I had my power port surgery on June 27th, and I am glad I have that, though my neck and the incision where the port is is still a bit sore. 

I am a bit nervous, though not worried about my hair at all. It can grow back. I worry about the Chemo. I have been reading up on a few things and understand it affects everyone differently. 

I was told I'm having the Neoadjuvant Chemotherapy. For 5 months I will have Chemo, then surgery and by December/January, radiation for 6 weeks. 

The one tumor is 8x7cm and the second tumor in my left breast is close to 4cm. 

I am ready to get this show on the road.  

Thanks for a great forum! 

Moderators

Hi AJ62, we sorry for all you're going through...

For sure you'll get responses from other members here, but in the meantime we recommend you to take a look at the section Breast Cancer 101 from our main site, designed to help you sort through all of the information on our site and help you find what is more relevant to you in this difficult moments.

We hope this helps!

The Mods

chrissyb

Hi AJ and welcome to a great forum where there are lots of girls who have walked the path you are now on and are very willing to hold your hand as you follow.

All chemos are different just as we are all different and it is because of those difference that we react differently to them.  There are however a few common SE between them all and nausea is pretty much on top of the list.  I say this so you are aware to make sure you ask your onc for plenty of anti nausea meds so you have them on hand and the secret is to take them BEFORE you feel sick not after.

Chemo is cumulative so as your treatment goes on the SE will knock you around a bit but as bad as it will feel know that it is doable and we are here to help you through.  Don't be backward in coming forward about the things that you are feeling........emotions will play a huge roll in your journey so don't be afraid to ask 'is this normal?'

The next year of your life is going to feel like forever and yet it will go very quickly.  Never forget that we are here to hold you up, cheer you up and pass on information.......your job is to walk tall in the knowledge that you can and will get through this.

Love n hugs.    Chrissy

AJ62

Thanks Chrissy.. I appreciate that. 

Docs say I am in for a long rough road but I will be as strong as I can be through this.

I do have anti-nausea medication my Oncologist has already prescribed and will be seeing her this Friday the 11th to discuss up coming chemo. 

I am a bit nervous I admit but staying positive. 

aff

AJ - I was diagnosed with ILC in Dec. While we were dx with different cancers our tumor size and treatment plan is very similar. I started out with an 8 cm tumor. My chemo was AC every other week for 8 weeks and Taxol every week for 12 weeks. As Chrissy stated, everyone reacts differently to chemo. I can tell you that you will make it through no matter what those side effects are for you. I had surgery on June 6. The tumor had shrunk to 3 cm. I start radiation this Thursday. The road has been long and you will probably feel every emotion possible as the months pass. Again, you will make it through. We are here for you. Feel free to ask as many questions as you need to. Also, I found the chemo thread helpful as I was going through chemo and the surgery thread was great as I prepared for surgery. I am now getting great feedback and support from the rads thread. 

Best wishes to you. 

AJ62

Thanks so much aff ! 

I was sitting in the Radiologists lobby today, as I was to learn of the eventual treatment I will have and I kinda cried to myself sitting there. I said this it NOW and not a dream and I will make it. I HAVE to. Not just for myself but for my 10 yr old son! I have to keep positive. 

I am SO glad I found this website for sure! 

I was told I will have the same meds.  I am to have the AC for 2 months and then Taxol for 3 as well. 

I just found out today the tumor is now 9x9cm and the smaller one close to 2.8cm in my left breast. 

Also my one left lymph node biopsy came back as positive. UGH! Not the news I had wanted to hear yesterday but after my insurance issues... I AM READY to fight this!! 

Thanks SO much aff! 

My best to you this week as you start radiation. Seems like we are taking the same path! 

I will be thinking of you on July 10th!  I am glad the threads have been helpful to you as well! 

aff

I am sorry about the lymph node. I know that's not the news you wanted but you have a great attitude. Sounds like you are ready to fight so I will send positive thoughts your way to help you kick BC to the curb. I also have a 10 year old (11 in 3 weeks) and a 12 year old. Fighting with everything I had along with staying positive as much as possible were the only options for me. 

For me it was easier to mentally deal with each phase as it came. I did not worry about surgery during chemo. I did not worry about rads while recovering from surgery. I view the whole treatment as a triathlon. I'm now getting ready for the final leg. 

When do you start chemo? I will say that as much as I was prepared to lose my hair it was one of my most difficult times. I told myself that I was going to shave it before it started falling out. I started chemo right before Christmas so with the holidays and my son's birthday right after the new year I didn't find the time to do it. My hair was very long and suffice it to say, it was not pleasant when it all started coming out. I recommend taking control of your hair loss. I know I would have felt much better about shaving it on my terms and not losing it to cancer. Whatever you decide, in the end it will be okay. 

AJ62

Thanks aff. I figured that it would be positive being it was 'a glow' from the PET scan. I was hoping not after the biopsy but it is what it is. 

I start Chemo this upcoming Monday, July 14th. I am not too bothered about my hair loss as I know it will grow back. I'm not keen on any side effects that may happen! But I will get through it. 

I was told I may lose my hair 14 days into treatment. How odd to lose it after the first dose. My hair is pretty thick/coarse and to my shoulders. Not sure if I will get a wig soon after, I may just use a head scarf to cover my head. In this Florida heat, a wig would make me all hot as it is! 

Stay strong! Sounds like you have a good handle on things and I like how you are not worried about things as you were going through each part of therapy.

I am about like that as well, as I am taking each day as it comes. I found it odd to see the Radiation Therapy Docs today months before I am to have radiation but I was glad for the information. 

You will do just fine! 

chrissyb

Hi AJ, so sorry to hear about the positive node but glad to hear that your treatment plan is finalised and you are ready for action!   I read that your hair is long.........may I make a suggestion?........it is a good idea to cut your hair short to start and then as soon as your scalp starts to get sore which means your hair is starting to loosen, a lot of women shave their heads to stop the hair from falling into everything.  Loosing your hair is such a traumatic thing doing it in steps is a good idea and makes it a little easier to get used to than going from long to none.

Hoping you do well with your chemo.

Love n hugs.    Chrissy

AJ62

Thanks Chrissyb -- 

I plan on trimming up my hair within the next week or so. After speaking to my Radiologists, the one mentioned it might be a good idea to trim it up and then shave it. 

I am not bothered either way. But in this heat.... less is more!! 

Anonymous

I lost my hair after only one chemo treatment...and it was about what your onc said  14 days.  I had LONG hair and I didn't know about this site, and no one said I should do anything beforehand.  Knowing what I know now, I would have cut it SHORT before chemo (also helps not have to deal with it if chemo isn't much fun). It is a real pain to deal with if starts to come out when it's long. I ended up going to a Supercuts type place on my lunch hour one day when I'd finally had enough (and a little bald spot).

AJ62

Thanks for sharing whatnow. 

Friday I was told by two Onc Docs as well as the nurse navigator at the Breast center as well as the Pharmacist there to cut it very short, now. 

I think I will go to one of those places as well. I need to get a head scarf first. *S* I think I have put this off long enough. 

Take care !

Spookiesmom

Hi! I'm in Florida too, bit warm now isn't it? Our time lines are/were similar I started chemo in July I think. My breast center also recommended I shave my hair, and I did. But then I wondered about sun burn on top. I did get a wig, it was like wearing wool long johns here. Just wouldn't work! So I got a baseball type cap, took care of that. 

Chrissy has great advise, we are here for you!  Sometimes it's one day at a time, an hour at a time, or a minute. But you can do it, remember the light at the end of the tunnel ISNT a train!

aff

AJ - We'll be thinking about you on Monday. We're here for you.