IDC, stage II, grade 3

Cristen002

Wow, where to start so many questions that I feel I have gotten answers on but need to hear fifty times over for it to settle in. Just diagnosed on 9/23/13 with IDC, grade 3, stage 1. After seeing the surgeon, the BRCA testing (still waiting on results), MRI and Oncologist in the last week it has been a whirlwind. I have never had to pull out my insurance card so many times. Surgeon received the results from MRI testing and said it looked like it has gone to lymph nodes. In all my reading I knew that meant chemo was a grave possibility now. After seeing the MRI results she staged it as II instead of one with the tumor being 3.1 instead of the originally thought 2.3. Oncologist said she would definitely recommend chemo due to my age (39) which is the one thing that I am absolutely afraid of. That made it REAL for me. Yesterday was a tough day. When I found out I really was ok and having to explain it to co-workers and friends and family seemed to make it a little more tolerable. I read absolutely everything I could find from books to internet and whatever I could find at various doctors offices. None of it prepared me for hearing the words "You definitely should do the chemo" come out of the oncologists mouth. The surgeon discussed lumpectomy vs. mastectomy and I was for sure in my mind doing the lumpectomy with radiation UNLESS the BRCA results were positive. I would do the mastectomy if I could take the time off work and not go into bankruptcy. I am fortunate enough to be insured but there is a huge deductible and like most people I live paycheck to paycheck. Anyway, just wondering if anyone else has been in the limbo of whether to do chemo or not and how they came to decide whatever the decision was for themselves. Have not scheduled the surgery yet as I'm still waiting on the BRCA results to make the decision on what kind of surgery to have. I know that they still have to do the sentinel node biopsy during surgery to really see if the lymph nodes have been affected. Has anyone has a smaller tumor, my age (39) and been stage 2 and done chemo?

christina0001

Welcome Cristen. I was diagnosed with IDC stage 2a at age 32 so I can relate a bit to your situation. Definitely a shocker. I think I spent the first three weeks crying or just in shock. My co-workers knew something was wrong because they said my face was basically white the week after I was diagnosed. Now is definitely a time to take care of yourself, pamper yourself as much as possible. As terrifying as it is, for many of us the beginning is the hardest part. The shock of the diagnosis, the multitude of tests and then waiting for test results, and the not knowing what is going on, can be much worse than actually treatment and recovery.

I'm sensing that you are really worried about chemo. That's completely understandable! Chemo is not fun but I want to assure you that for most of us, chemo is very doable. It's not like in the movies for most of us. The chemo most of us get is not the super-duper rough stuff that some other types of cancer patients get, plus there are so many medications our oncologists give us to manage side effects. It's not easy but it is doable. Many of us managed to care for children and/or continue to work full time or even close to it during chemo! Obviously everyone is different but I want to give you hope that you can do this, you will get through it if you do end up needing chemo.

Waiting until your BRCA test results come back is reasonable before deciding what surgery to do. Some women have the option of doing chemo first, then surgery, as this can shrink the tumor down and make a lumpectomy more doable. I would encourage any woman to carefully weight her options, and consider getting a second opinion, before deciding on what surgery to do. If you end up going the mastectomy route, that may mean researching reconstruction options. If you are thinking about mastectomy, I would also recommend getting a copy of The Breast Reconstruction Guidebook by Kathy Steligo. It was really helpful to me in understanding my options.

Finally, regarding insurance... I would expect that you will definitely meet your deductible this year if you have to have chemo. So this may not be a barrier in choosing surgery options. It's late enough in the year that you may end up needing treatments/surgeries next year as well and meeting it next year too. I would encourage you to be cautious in letting this be a major determining factor in choosing your options. Many hospitals will be flexible in allowing you to make payments to them. It may be worthwhile to talk with either the hospital or cancer center social worker about assistance as well; he or she can see if you qualify for assistance, and their may be local groups like your local chapter of the American Cancer Assocation, Breast Cancer Association, etc. that can provide help as well. It's definitely worth asking about! I was surprised to learn that I qualified to have all my co-pays for the Herceptin I needed paid for, which was a huge help.

Best of luck to you. Let us know how you are doing.

Cristen002

Thank you so much Christina for answering me! You gave me a lot of good info! I will definitely look into the hospital social worker for financial advice. There sure isn't a lot of help out there for people that are insured but have a high deductible it seems. You gave me a lot of hope for getting through the chemo treatments as well. Luckily I don't have children to worry about, just a dog (that acts like 5 kids). You are right about the first thing your mind goes to is the movies and how horrible it seems for them. I have to remind myself IT IS A MOVIE. How often did you do treatments? Were you able to work the day after? How long in between did you have?

If you don't mind me asking and I hope I'm not getting to personal for you, it looks like you did the lumpectomy first then did the mastectomy? What changed for you? How did you come to that decision?

Now I have 50 more questions for you! Sorry! And once again, thank you for putting my mind a little more at ease over the bomb that was dropped known as chemo.

fredntan

since I work in healthcare and its germy there I didnt work during treatments. i was off work a whole year. we only paid the essential bills then. just let the other ones go. my credit is ruined, but so is most everyone s in america.

it would have been totally doable for me to work during chemo or rads. taxol weekly dose was easy for me. the AC was a little harder. i had that every two weeks for total of four doses. the first few days i felt icky. no appetite. didnt have nausea

Edith61

I was told on 8/28/13 that I had my Breast CA..as you said everyone has there hand out for money..I was all set for surgery on the 2nd of Oct until I went for my EKG well let say did not go well..since then the Brca test came back + on Brca2...my oncology DR told me so I just asked him look if I was your daughter, wife or mother LOL what would you tell them to do and what I was already thinking is what he said will have both removed...jUST IN THE LAST 1 1/2 WEEKS FOUND A NEW HEART dr ekg , Echo and Stress test all looks good...ct scans and bone scan for staging...(a couple concerns on the bone scan but all say its going to be fine) SO NOW WE SEE HIM ON THE 16TH..SUPPOSE TO CALL ME WHEN HE GETS THE REPORTS...NOT SURE IF THEY WILL STILL DO THE CHEMO THEN SURGERY OR SURGERY THEN CHEMO DEPENDS ON tHE bREAST dR, hEART dr AND oNCOLGY dr..check and see went your year ends with your Ins...When all this started we found ours is the First of Aug each year ...

msphil

sweetie, I know how you feel as do us all here, but after your cry and then the treatment plan will go into effect and things will be more bearable,they now have so much meds to make you comfortable, as you go thru this. take it from a 19 yr Survivor(Praise God) you will get thru. msphil(idc stage2, 0/3 nodes and L mast, chemo before and after surgery to make sure to get ALL the cells, rads and 5 yrs on tamoxifen)

Cristen002

Thanks for the words of encouragement from all of you. I would like to hear from some people that have done or are doing chemo now to prepare myself. I am aware that everyone is different but I would like to hear some stories of people that had a full time job and how they handled that as well. We you able to work thru it? What were the biggest obstacles for you? Side Effects? I have found that this group is better than anything you could possible Google as it is more "Real" life than a bunch of statistics. Thanks!

Claire_in_Seattle

Cristen....I am self employed, and I did work through chemo. I did suffer financial repercussions later, but this was because my key client lost one of their major clients so was affected. Fortunately, I had some savings. The good news is that this eventually led to one of the gigs I am now doing. I interviewed for that just at the end of chemo.

I also cycled throughout on weekends and walked a minimum of one mile every single day. I think this made a difference as I didn't get chemo brain. I did slow down when tired, but I was able to do data analysis if this gives you some idea.

You will not get as much chemo as I did, as was on a study. I would have needed a half day off on infusion days, and Day 3 was the worst energy-wise. If you can do some work from home, it would be helpful. None of the days did I feel any worse than I did when jet lagged last week. I did not got nausea, and didn't need any meds for that either other than what was given with the infusion.

But I was lucky. I also was determined to keep working if possible, and I did just that. Good luck. - Claire

Cougarlicious

I'm doing chemo now and would totally work if it weren't for my hour long commute and the fact I'm pregnant, which pushed me into disability. If I had a job that could be done remotely, I'd be able to handle it. I've been fortunate to have very minimal side effects from treatments, but even those who have bad SEs usually only have them for the first few days after infusion, and plan their work schedule accordingly (e.g., having infusion on Fridays so they can recuperate over the weekend). If you're in healthcare or teaching where you're around germs all day, you may take days off during your low nadir period.

nbrown77

I was just reading some of the posts regarding financial difficulties....I'm sorry to each and every one of you who have to face this disease while having to worry about financial difficulties. I too, who am a Registered Nurse and generally work in the medical/surgical area, have had to face different options regarding insurance and finances. One positive note for me is that my employer offered me a different position in an area where I can still practice as an RN but around a different selection of patients. I have 3 children, currently pregnant with my 4th, and carry the health insurance for the family. I made it clear that if I have no insurance I have no treatment so my employer was absolutely wonderful in working with me to make my situation work. I know not everyone has this option but my advice is to stay positive and remember you and your health comes first. I know finances are a worry that we deal with everyday but take care of yourself!!!!