Just diagnosed - questions

xiangfumom

I was just diagnosed with IBC three days ago. I noticed symptoms one week prior to that, at which time I did some research and discovered IBC. I had a bone and CT scan today, but saw some posts that mentioned a PET scan. What is the difference? Also, what does NED mean? I am a single mom to two beautiful daughters from China. We have no history of breast cancer in my family. It feels like I've just been thrown to the lions? Any insight on how to weed through the information overload? Also, I am very worried about 'chemo brain'. Does anyone have any suggestions for dealing with this, particularly when my work demands logic and attention to detail? Thanks!

KAud

A PET scan is a newer diagnostic tool they use to look for spread to other areas. They inject you with a small bit of radiation and you have to sit still for 45 minutes so it can move through your body evenly. The radiation will supposedly stick to any tumor/cancer sites in the body. You go through the scanner and they image your body and look for "hot spots". I had to bring my CT scan with me to my PET scan because they look at the two of them together to rule out things like arthritis and old fractures.

NED means "No Evidence of Disease". We LOVE NED around here. Chemo can be very hard so you are going to need some help with your children. Do you have family closeby? I wouldn't overly worry about chemo brain at this point. I became a little forgetful but nothing really worth mentioning.

Do you know your plan of attack yet? Estrogen, Progesterone, HER2+ status? IBC is a very aggressive form of breast cancer and you can expect your oncologist to be very aggressive with you. I did work through my chemo but I had to take off days when I was just too tired to do it.

Good luck to you.
Karen

alberta

Hi,
I am very sorry to hear about your diagnosis. I,too have an IBC diagnosis. I had a PET scan that Karen very accurately described, but I also had a breast MRI that showed more specific evidence that was helpful in my diagnosis and treatment plan. As you know, this is a very aggressive disease and my doctor treated it very aggressively with a dense dose chemotherapy. This got the first round, AC, to shrink the cancer quickly and then I started on taxol and herceptin. I am HER2+. Like Karen, I have been able to work throughout my treatments. I receive accupuncture treatments before each treatment and feel that it has helped me maintain my energy and has boosted my immune system. I am a teacher and expected to be sick a lot, but that hasn't been the case. The doctors are very good at helping to manage the side effects of the chemo. Not that it is fun or easy, but it hasn't been as bad as I thought it might have been.
You'll be in my thoughts and prayers! We can beat this thing!

jasmine

Sorry you have joined the IBC club. I'm a 3 1/2 year IBC survivor. I have never had a PET scan. My onc only uses ct's and bone scan.

I was able to work during treatment but alot will depend on how you tolerate the chemo/rads and what type of work you do. I was not sick or nauseated because of good anti nausea drugs but everyone is unique in their response to treatment. There are many anti nausea drugs to use so if the first one they give you doesn't work, call the onc nurse and have them script you another one to try.

I'll be praying for you and your beautiful daughters and please feel free to pm with any questions you may have. It is not easy but it is definitely doable.

havinfun

I am also newly dignosed. I had my first round of ac yesterday. I will be getting it every 2 weeks x4, then herceptin and taxolevery 2 weeks x4 before MRM. My firt treatment wasn't bed. No nauses. I was given Amend, zolfram and decadron. I hope the next one also goes smoothly. Today I was able to go out and get my hair cut short before it all falls out. This sure is a scarey disease. I also work as a school nurse, so I hope I stay healthy. I am very greatful for all that I have learned from these discussion boards. I like to know what to expect.

xiangfumom

I feel very fortunate with the news I received on Friday - there is no detectable spread beyond the auxilary lymph nodes and the cells are 60% ER+ and 3+ HER2/neu. I will begin chemo next week - Taxotere and Herceptin for certain, and then carboplatin or Xeloda (if I am accepted into a clinical trial). Does anyone have any experience with either of these drugs or with clinical trials? I am anxious to see how the chemo will affect me. In the meantime I read and pray and spend time with my girls.

Glad to have somewhere to turn - even if it is the club no one wants to join...

lexi4

I am sorry that both you ladies are here. I was diagnosed w/ IBC in August 05. Her 2+, er/pr-. I received ac, taxol and herceptin for a year. CHemo of course isn't fun, but doable. Hang in there. It will get easier. Once you are on the herceptin alone it is more managable.

Hugs and Prayers,
Lexi

shirley58

I was diagnosed in Nov.05, Had 6 TAC tratments, , I am now stable, will be one year the 10th of this month since i had my last chemo treatment..I was diagnosed with IBC .

erika-canada

HI LADIES! FIRSTLY, THANK YOU FOR PREVIOUS HELP GIVEN.

WITH IBC, CHEMO FIRST, THEN SURGERY, THEN RADS. APPROXIMATELY, HOW MUCH TIME DID THEY GIVE FOR SURGERY TO HEAL BEFORE RADIATION WAS STARTED. PLEASE SEND PM'S.

GREATLY APPRECIATED,

ERIKA

Anonymous

Post deleted by Judith

bonny1963

Moderator was notified about this. Some people are just idiots.

rushelle

bonny, there's a couple of idiots around tonight.......moderator was notified about another one too

hugs

rushelle

bonny1963

Rushelle, I would not wish bc on anyone, but these losers are playing with fire. Never can tell when something will happen in your life and you might just wish you hadn't done the things you've done. I think you should live your life accordingly. I hope the moderators get them off soon. They are not as funny as they think they are. Bonny

alberta

HI Erika,
I had my mastectomy on March 27 and will begin radiation next Tuesday.I met with the radiation oncologist 5 weeks after surgery to get on his schedule and then just had my "fitting" today (Monday, May 7)