treatment decision - making me crazy!

Welcome, Weezie
I was very grateful that all my treatment (surgery, chemo, and rads) was at and around a hospital that's a 10-minute drive from my home, given how exhausted I was much of the time during treatment -- but I know some women feel more comfortable driving a longer distance to take advantage of a world-class facility, and I'm sure others will weigh in soon.

I mainly wanted to welcome you, and encourage you to come here often -- the women and men here are the best resources and companions for this journey you'll find anywhere.

Traci

following you..
Hi Weezie,
I almost match you...I was diagnosed 2/1 and lumpectomy/negative nodes 2/16 and Stage I and pr- and er+ and her2+ and grade 3. I meet my oncologist on Monday and will see what is recommended then. What chemo are they recommending for you? what is the clinical trial? I think this is the first and most important decision to make. Did you have the oncotype test done? What did it say?..that might help the decision.

Will your oncologist that is monitoring you be the same person no matter where you go? How often and for how long will you have treatments? The travel would not bother me if it means the difference in your care. I was caregiver for my husband with Stage IV colon cancer for 5 years. If I had known on day 1 what our future would have held, I may have questioned if it was possible to do. Once you are in the midst of your treatment - it is all doable and just makes sense. We averaged once a week chemos for five years and the drive was one hour to a top cancer center. It was just part of what we did. The "getting there" part is just part of the routine - the tough decision is which treatment and which oncologist?

I am so anxious for Monday - it is good at least you know what you are deciding between. Have you seen the movie-"Living Proof"---you must watch it(netflix has it and it has been on Lifeline) -all about the creation of Herceptin (which I am assuming you are being given?) and the clinical trials for it. It made a difference for me watching it--if you watch it, let me know what you think...it has me appreciative of so many of the choices breast cancer is offering us today.
Okay, sorry so long...keeping you in my prayers,
Mary Kay

jbug said:

Weezie
So glad you found this discussion board, so many women to love and support you as you go thru this journey. This is a great support group! As others have mentioned, you need to feel good about where you choose to have treatment and the kind of treatment. I also had lumpectomy, negative nodes ER/PR + and HER2 neg, rads and now tamoxifen. I'm military and work at the hospital where i received treatment...that being said, my home is also pretty far out of town, so i would likely have had to drive an hour for treatment anyway..I would have opted for the drive anyway, if i was comfortable w/the docs/treatment center. There are women who've posted that they were not happy w/their oncs and found other providers even after they'd started treatment.

Take your time and get all data you can about what they want to treat you with...though we are anxious to make treatment decisions right away, the reality is it isn't an emergency...you have time...time to make the decisions you feel are right for yourself.

Blessings...
Julie

Hi Weezie
I'm also
Hi Weezie

I'm also node-,pr/er/HER2+,stage 1C, grade 3.
I asked my oncol. about joining a trial and he recommended that I don't do one because my survival rate is high and he didn't want to mess with it. The cancer center I'm using is 45 min. away and worth every mile. I love my team. They do a monthly video-meeting with Danna Farber on all their cases so I have the best of both. Went through chemo--A/C + T, radiation 35 treatments, now on herceptin until Oct. and tamoxefin for 5 years.

Good Luck with your decision, you have to be comfortable with your medical team.
Sher

Sher43009 said:

The most important thing to
The most important thing to remember is that everyone reacts differently. I had 4 A/C treatments every 2 weeks and 1 taxol treatment. I had a bad reaction to taxol and opted out of any more treatments. I had a different reaction to each chemo treatment so it was a wait and see. Working was difficult but I'm self-employed so I had to push myself--no work no $$. My treatments were on Wed., Thurs. had a Nuelasta shot--this speeds up your blood cell recovery so I could have chemo every 2 weeks. If I went every 3 weeks I would not have had to have the shot. I was basicly down for a week and worked a week. Once I started radiation I was able to work the entire time. I was very tired and in bed by 7:30. As someone said in another post if you sat down to relax you fell asleep.

The unknown is always scary. I found dealing with one thing at a time helped. Deal with chemo now, worry about radiation later when it's time. Get plenty of rest, drink tons of liquids, I got dehydrated after my 4th A/C and never felt so sick in my life. I slept so much that I wasn't drinking the way I should have been. Set an alarm clock to wake yourself up to drink if necessary. The frozen fruit bars worked as well. Bring someone with you, it helps pass the time and you shouldn't drive afterwards. None of this is fun but it is doable.

Good Luck on Monday
Sher

Mary Kay
When we met with the oncologist the first time, he actually told my husband that if I felt like going to Hawaii during the 3 weeks between my chemo treatments, take me!

Was he insane??

My treatments were on Wed. At first, Fri, Sat & Sun I felt like I had the flu. Then Monday I would start felling some better. By Wed, I was feeling fairly decent.

BUT, I went for a blood test on that Wed and my white count was always low, so I was basically in quarantine, away from anyone who had been sick in the last year and a half! ;-)

By the blood test the next Wed, WBC was back up and I felt almost like a human being for a week before it started all over again.

That would be a very short trip to Hawaii or anywhere else!

As the treatments progressed, my "good days" were fewer and farther between. Basically, I was just glad to be at home from August until late November.

I feel pretty good now although my energy level is somewhat diminished. It's getting there slowly and I do what I can.

Work? Not me baby! My work was to survive!

Sharon_D said:

Mary Kay
When we met with the oncologist the first time, he actually told my husband that if I felt like going to Hawaii during the 3 weeks between my chemo treatments, take me!

Was he insane??

My treatments were on Wed. At first, Fri, Sat & Sun I felt like I had the flu. Then Monday I would start felling some better. By Wed, I was feeling fairly decent.

BUT, I went for a blood test on that Wed and my white count was always low, so I was basically in quarantine, away from anyone who had been sick in the last year and a half! ;-)

By the blood test the next Wed, WBC was back up and I felt almost like a human being for a week before it started all over again.

That would be a very short trip to Hawaii or anywhere else!

As the treatments progressed, my "good days" were fewer and farther between. Basically, I was just glad to be at home from August until late November.

I feel pretty good now although my energy level is somewhat diminished. It's getting there slowly and I do what I can.

Work? Not me baby! My work was to survive!

what chemo?
Sharon,
Which chemo treatment were you on? I am still up in the air about working or not too....I still need lots more facts..but you are convincing!
Mary Kay

Hello and welcome. I am
Hello and welcome. I am er/pr and Her2+, stage 2, grade 3 and live in the Boston area. I started Chemo in November. Had Taxotere, Carboplatin and Herceptin for 6 cycles (1X every weeks) and just finished. Will continue with Herceptin for 11 more cycles. I am starting radiation next week. I chose to have my surgery and treatment in Boston. I got great care there. After my second chemo. treatment I changed to a local treatment center because I was having side effects (long term diarrhea etc.) and found it difficult to travel the hour to Boston when feeling ill. The local treatment center gave me the same treatment as was prescribed in Boston. After I am done with my Herceptin I plan on going back to Boston for all follow-up care. For me, I feel more comfortable being close to my treatment center during chemo. and radiation. Personally, I would choose the traditional treatment over the clinical trial because my cancer is a grade 3, which means it is aggressive and I would be wary about a treatment that has not been proven effective. I know this is a very difficult decision and you need to make ones that are good for you.
Best wishes,
Marjorie

Weezie2010 said:

TD Tools
MaryKay, I will check that out, no start date yet, i am 5 wks out from surgery and the boston onc says treatment should start 4 - 8 wks after surgery, i felt like i had all the time in the world before, but now feel up against the wall a bit. it is definitely all of the "I don't know's", but at some point i have to know or at least think i do? I had to push for the oncotype, luckily my insurance covered it, but it really didn't tell them anything they didn't know, but I don't think that's always the case...
Weezie

decisions...
Weezie,
No one has said so, but I think I did not get the oncotype test cause they already know too...but you have made me feel better. I would actually like to "see" the results and would help me to make a decision that I would not question later. I thought chemo started 4 weeks after surgery and I know I am still bruised and healing(am 3 1/2 weeks now), so maybe nothing is going to start yet. I feel like I want to be in even better health to start it all...oh well, again I will wait and see on Monday.
mk

chipoo said:

Hello and welcome. I am
Hello and welcome. I am er/pr and Her2+, stage 2, grade 3 and live in the Boston area. I started Chemo in November. Had Taxotere, Carboplatin and Herceptin for 6 cycles (1X every weeks) and just finished. Will continue with Herceptin for 11 more cycles. I am starting radiation next week. I chose to have my surgery and treatment in Boston. I got great care there. After my second chemo. treatment I changed to a local treatment center because I was having side effects (long term diarrhea etc.) and found it difficult to travel the hour to Boston when feeling ill. The local treatment center gave me the same treatment as was prescribed in Boston. After I am done with my Herceptin I plan on going back to Boston for all follow-up care. For me, I feel more comfortable being close to my treatment center during chemo. and radiation. Personally, I would choose the traditional treatment over the clinical trial because my cancer is a grade 3, which means it is aggressive and I would be wary about a treatment that has not been proven effective. I know this is a very difficult decision and you need to make ones that are good for you.
Best wishes,
Marjorie

I live an hour out of
I live an hour out of Boston, and had my treatments there. I had a number of complications from the chemo that were not common and going somewhwere closer would have been easier. I think the care would have been a bit more personal. A number of outside hospitals are now affiliated with the big centers. I am going to start my radiation at Dana Farber soon, I dont relish the drive but I trust the doc. I wish I had my chemo there. I think youcan get good chemo care in a number of places now. It is up to you. as are clinical trials.

Hard decisions
I live in a small town 3 1/2 hours from Phoenix. Visited with the local oncologist and then got a second opinion from an oncologist through a well known breast center/hospital in Phoenix. Then I went with my gut. I'm sure the local guy knows what he's doing and I've heard wonderful things about the oncology center in town but I just felt more comfortable with the big city doctors. So, we've driven to Phoenix for the 4 treatments and driven home afterwards. Interestingly, the weather turned to snow after every treatment making our ride home more difficult. It also made it tough drinking water with very few stops inbetween the towns on the way home! We persevered, though, and made the best of it and it all worked out very well. I wouldn't let distance scare you off.
Hope your decisions are confirmed soon and you can be at peace.
Beth