Mom just Diagnosed....please help

4kidsofIBCMom

I dont know where to begin.......and please forgive if this is all over the place. My mom was diagnosed monday with both Ductal and lobular, we are not 100% confirmed that it is IBC but we are assuming because of the symptoms presented. Red swollen breast, breast has doubled in size, retracted nipple with discharge and swollen lymph nodes in both the armpit and around the collar bone. they are doing a MRI today to determine if it has spread to the chest wall and lungs as well as the lymph system. I am the oldest of her 4 biological and 4 step children ranging from 28 y/o to 5 y/o . What kind of support is out there for us? she may not be ready but I NEED to get some guidance. I am a mess and trying to stay strong for her and the other 7 children and 4 grandkids. The dr's jumped straight to surgery to remove the right breast. but want the MRI first. I am looking for some guidance from you all and how or what I should do or questions i should ask the doctors. Please any info is helpful. Thank you,

Opal

Caseysmom

Opal:

I'm so sorry your mom has been dx with this ugly disease. You will find alot of support and love on here.  You may want to call the American Cancer Society they will put together a packet of information for you.  Also check to see if you have Gilda's Club in your area. IBC is a differnt kind of beast I'm glad that you requested a MRI some times the MRI may not pick this up.  You should request a PET Scan.  This scan can pick up the thicking of skin.  The only way to be sure if she has IBC is to have a biopsy in one of the area's.  If this surgeon does not want to rule out IBC I would get a second opinion. I would also ask the surgeon if he has every heard of IBC.  There are a lot of doctors out there that have never heard of IBC.  As of having surgery the protocol is to have chemo first followed by surgery followed by either another round of chemo or radiation therapy.  For me I had 20 weeks of chemo prior to surgery followed by another 4 months of chemo then radiation therapy.  I know that it took me a long time to admit that I was sick because I felt great.   I would pull your other siblings together and a few of you go with her to the next appointment.  Also bring a pad of paper with you to write down your question and the dr answers.

I'm at work right now but I will post more when I get home tonight.

I hope this helps.

Hugs

Laura 

ameron

Hi Opal,

I am very sorry you have to be here posting, but you will definitely get a wealth of info from everyone here.

I agree totally with Laura.  Get second opinions and insist on MRI and Pet Scan. I was diagnosed in May 2009 and did a lot of research.  As Laura said, the protocol for IBC is chemo first then surgery....then usually rads and possibly more chemo.  The old school of thought used to be to remove the tumor first.  However, now the thought is that the delay in chemo of 4 weeks after surgery is too much time to allow the cancer to spread. They give very aggressive chemo first now to kill the cancer before surgery.  I have had 3 of 4 rounds of aggressive chemo...called AC and it has already shrunk my tumor by about 80%.  

And as for being a mess....well unfortunately that is normal at this stage.  I was an absolute wreck waiting for all the test and final diagnosis. I don't think there is much way around that.  I didn't actually feel a bit better until after I had all of my tests done and knew exactly what I had and what my prognosis was...and then still didn't feel better until after my first chemo and realized that chemo wasn't that bad.....its bad don't get me wrong, but doable. And you have to be an advocate for your mom and make sure she gets second opinion and the best course of treatment!  Keep us posted and we'll be sending good thoughts your way!

NYmom60

Hi Opal,

Sorry your mom and family has to go through this.

If there is any chance it is IBC, your mom should not have the surgery first. As Laura and Ameron said, the protocol now is to do the chemo first. Definitely get a second opinion from a doctor who is familiar with IBC. The surgeon diagnosed me with IBC based on the initial clinical symptoms ( swelling and some peau d'orange). My skin biopsy came back negative, but my surgeon still felt based on all the evidence it was IBC and best to do the chemo immediately.

Definitely take a notebook, list all questions you and your mom have, and write things down while speaking with the doctor since it is easy to forget once you are home (especially now with all uncertainty).  Also, ask for copies of all tests/results. 

You and your mom will feel better once a plan is in place and the initial shock wears off. It is all confusing now and upsetting, but you will get through it.

Hugs,

Monika 

4kidsofIBCMom

THank you so much! I cant begin to describe how much it means to have you ladies walking me through this. We are meeting with the best Oncology Surgeon in the area on Thursday. We did request an MRI and they only MRI'd the Breast good news there that it had not spread to the left breast. we will know this week but her journey seems to "text book" IBC. She has had all the symptoms of and we are pretty confident that is what we are dealing with. it is confirmed it is both Ductal and Lobular but we are confident it is IBC as well! I appreciate the info ladies and cannot thank you enough for the good thoughts and prayers ( and HUGS) This means the world to know there are others who know what Im going through being only 28 y/o I called my dr and requested to have myself checked out as well! Does anyone have daughters? and if so have they had any testing such as BRAC Analysis or others?

Jadai

Hi,

My mom has had IBC for quite some time and you need to get to an oncologist before the surgeon.  The onc will start her on chemo to shrink the tumor and then she can see the surgeon for a mastectomy.  IBC is different from your "typical" (forgive the term) breast cancer.  Trust me, it is NORMAL to be so freaked out.  I couldn't focus on anything else for quite some time.  Please feel free to PM me, I have been through it all with my mom.

downtownfan

Yes, please don't let them cut into her!!!! My mom started chemo first and it wasn't working so they did surgery. I believe this was a giant mistake. Please, please, please get a second opinion from someone well versed in IBC.

4kidsofIBCMom

Ok a little more news! The "surgeon" we are seeing is a surgical oncologist. He is who handles all of the oncology and surgery if needed. Thank you for all the info its been very helpful!!!! Im hanging in there as is mom and the other kids. Its a rough road but we are strong and ready for the fight! I will keep you all posted as we progress!

Caseysmom

Opal:

Keeping you and your family in my prays!

Hugs

Laura

4kidsofIBCMom

Alrighty then! It is Confirmed IBC they are starting with AC next thursday. The port will go in monday morning. She has a great Oncology team and I feel confident that we will fight this tooth and nail. they did a biopsy of the nodes in her arm and she is in a PET scan as we speak. The Chemo they will do 16-24 weeks of. the drugs they are using are cytoxan, adriamyacin and taxotere. Can anyone tell me if these are the drugs they have had. I know that she had little to no estrogen receptors. but this is still german to me. Thanks Ladies! Have a great 4th of july!!!

FloridaLady

Most of us did this combo as our first line of treatment.  What was her her2 status and also does she have a basal tumor?  This is an aggressive treatment but doable.  If she has not had surgery please push to have both breast removed.  ibc loves to move to the other breast (my did and fast) also I found it easier to deal with the appearance and finding matching boob later.

Best to you both and hoping for gentle treatment.

Flalady

Caseysmom

Opal:

I had 4 rounds of AC which took 8 weeks to finish followed by 12 rounds of taxol.  My first treatment with A/C I started to get sick 2 hours after my treatment and was sick for 8 hours.  I was put on Emend and steroids which made the remainder of the A/C treatment much better.  Taxol I had no problem with however I was still given steroids prior to treatment.  After my mastectomy I had another 4 months of chemo (gemzar and carboplatnium ?sp) followed by 7 weeks of rads.  My rad treatment was a walk in the park compared to the 1st round of chemo.

Keeping you and your family in my prayers.

Hugs

Laura

4kidsofIBCMom

Ok Its official I am a wreck! We got a call from the oncologist that they want to see mom a day earlier because they got the PET results, so we are headed to oncology tomorrow and AC is supposed to start on Thurs. The only thing running through my head is this cant be good! I know I should stay positive and I am around her and the kids, But I am seriously starting to break! I dont know where to go from here or what to do next! I can only be strong for so long! UGH!!! FYI CANCER SUCKS!!! Im so sorry for venting, I just have nowhere else to do it!

Opal

germangal

Vent away, Opal! That's what this community is all about. I wouldn't totally freak out about the appts being moved earlier, my onc did the same thing to me -- if results are in, why wait? Sounds like your mom is heading down the same path as many of us for her treatment plan. Please be sure to take advantage of ALL the support services provided by your hospital - social worker, therapist, etc. ll my caregivers and I found talking to these wonderful people while going through the treatment year really helped with our individual green gremlins.

Also, American Cancer Society has a program called "Reach to Recovery" where they can match your mom up with someone who has been down this road, sort of a "buddy" to help her. I had my buddy talk to my mom & hubby while I was in treatment, to help them see that this bugger is survivable. She really helped them with their issues, which in turn helped me with mine.  Just call your local ACS office, they are there 24 hrs, 7 days a week. They can also help with other services such as transportation, wigs, etc. Again, don't be hesitant to ask for & accept the help, that's what our donations are for, just like this site.  

germangal

Vent away, Opal! That's what this community is all about. I wouldn't totally freak out about the appts being moved earlier, my onc did the same thing to me -- if results are in, why wait? Sounds like your mom is heading down the same path as many of us for her treatment plan. Please be sure to take advantage of ALL the support services provided by your hospital - social worker, therapist, etc. ll my caregivers and I found talking to these wonderful people while going through the treatment year really helped with our individual green gremlins.

Also, American Cancer Society has a program called "Reach to Recovery" where they can match your mom up with someone who has been down this road, sort of a "buddy" to help her. I had my buddy talk to my mom & hubby while I was in treatment, to help them see that this bugger is survivable. She really helped them with their issues, which in turn helped me with mine.  Just call your local ACS office, they are there 24 hrs, 7 days a week. They can also help with other services such as transportation, wigs, etc. Again, don't be hesitant to ask for & accept the help, that's what our donations are for, just like this site.  

Jadai

I know exactly how you feel and have been through all of the emotions you are feeling when my mom was disgnosed.  I promise that once treatment has started and the chemo starts to work (it kicks butt fast) you will feel better.  I won't tell you not to freak out because I know that there is nothing that anyone can really say to soothe you right now.  Best of luck at the Dr. and please let us know how it goes.

4kidsofIBCMom

Thank you ladies for the support. I am in contact with a social worker at the hospital and she has been a god send. I have had all sorts of trials and tribulations in my life but I have never experienced this magnitude of Stress and it being something completely out of my control is beyond Unnerving I just want her to feel well and not have to deal with this more than anything. You ladies have been so good to me and I cant thank you enough. I will be sure to post as soon as I have some info this am! Thank you again!

4kidsofIBCMom

Ok, Well This is what we heard from the Onc. today turns out we are in stage 4 shes a Triple neg. It has metastasized (sp) to her Right hip and 5 vertebraes in her back, She was also Diagnosed with Invasive Ductal as well as IBC. They have changed the chemo drugs and will be starting Chemo on monday, she has an Infection in the right breast where the biopsys were taken. Has anyone else had this met. to Bone cancer as well? If so what should I prepare myself for?

lexislove

Opal, sorry about the news you all recieved today. Maybe you can post on the Triple Neg page of the board to ask some important questions. There are also woman on the Stage 4 page who are Triple Neg and could help with treatment info for your mom.

As for your question , what should you prepare youself for...? your mom has a very, aggressive breast cancer. It is no longer "curable" but "treatable". There are many woman who live years with bone metastasis.  I would suggest someone to go with her to her appointment with her onc and ask a lot of questions. The woman on here are fabulous and have a lot info. I encourage you to ask questions!

Jadai

Well, I can tell you from my own experience with my mom.  If anything changes or doesn't seem right go to the Dr. immediately.  Don't wait!  This cancer is aggressive and can take a turn in an instant.  Please just stay on top of everything!!!!  I don't mean to scare you but I have lived this exact diagnosis with my mom.  Please feel free to contact me with any questions or if you just want to talk.  I have been in your exact situation.