Chat on Sunday, April 23 - Anxiety/Worry about Recurrence

[Becky]

Dear Members


There will be a chat on Sunday, April 23 at 8pm Eastern Time on Anxiety and Worry about Recurrence. Please join Maryanne and me in discussing a topic that we all think about at one time or another (and sometimes, all the time).

Have a great weekend.

Kindest regards,

Becky & Maryanne

[Shawn]

I am stage IIIC (internal mammary gland removed)Her2+++ ER/PR-. Diagnosed August 2005 at age 38. Went through dose dense A/C and Taxol/Herceptin. 28 rounds of Radiation, with 5 boost sessions. Is there anyone out there with a simular diagnosis and how are you doing? My cancer was 3/3 grade and I can't find anyone to compare my future with.

Thanks,
Shawn

[Cathya]

Shawn;

I was diagnosed Oct 2004 stage 3c with 3 cm tumor in left breast and 1 cm tumor in supraclavicular node. I went through lumpectomy but no removal of clavicular tumor, 4 AC, 4 Taxol, herceptin during last taxol and onwards until last treatment when low muga called for stopping herceptin temporarily. I went through radiation including boosters particularly to clavicular node area. I am ER/PR+ ..... i wasn't sure if you were ER+ or - and so am also on Arimidex. So far .... so good. I am closedly monitored and see my onc about every 8 weeks. I am currently going through a CT of the brain, bone density as onc wants to prescribe calcium, and another muga. I was once told by my onc's assistant that I was lucky to have the spread to the one area which allowed for the potential of cure. I just feel so lucky that herceptin is here for us and other drugs are fast coming down the pipe. I feel good although I need to lose some weight and struggle now with that. Michelle is also stage 3c and there are others on the site. When were you diagnosed?

Cathy

[Shawn]

Hi!

Thanks so much for the reply, here is more info on me. I was diagnosed last year in August. I had two tumors in my right breast 1- ER/PR- Her2+++ 3cm. The other one was ER/PR- HER2- and 2cm. Modified radical mastecomy. Removal of internal mammary gland totally replaced by cancer and axillary lymph nodes , 1 of which was positive. I am still finishing my year of herceptin. Just wondering how likely I am for a recurrance with Herceptin. All the data they post talks about improved survival rates for 1 year.....what about after that? My onc said that they dont have that yet, so they really dont know.

Shawn

[Cathya]

Shawn;

I don't understand why you are stage 3 if your tumors were confined to the breast and one positive lymph node. However, we all worry about recurrences. I think this Sunday's chat should be excellent as everyone will have the opportunity to talk about these fears and deal with them in a group with support. My understanding is that the longer you go until a recurrence (and hopefully never have one)..... the better. I am over a year and look forward to many more. We have both received very aggressive treatment with the newest chemo's, radiation and herceptin. If you look over the site you will see a number of recent posts from Lani that state the odds are now thought to be better for us over Her2-'s which is amazing!! Also, there are other drugs (like lapatinib (Tykerb) for one example) currently in late trials which could even be better than herceptin. I have also come to realize that even if I do recur there is hope. Read Steph's latest scan results and you will see one of many amazing survivor stories from her2support.com. I am now trying to focus myself on diet, exercise (now the weather is so nice) and finding the right supplements..... things that I CAN control. I guess we can never go back to the way it was pre-diagnosis but we can have long, happy lives.

[Shawn]

Cathy,

Sorry if I sound negative! I am stage 3 because of the internal mammary gland-its is in your chest under the muscle, like you having the subclavicular it means cancer has been on the "superhighway" of your vascular system. I have been losing hope lately due to continued pain all over my body and alot of dizziness.
I am a vegetarian (for over 20 years) and had been training for a 5k run when I was diagnosed. I am at a loss for what to do and I guess it shows. Thank you for the response, this has been really my first time to talk to someone.

Shawn

[RoxE]

Recently diagnosed ER-PR-HER+++ Stage 3B. Don't know why but my radiology oncologist told me there was only 3A and 3B. Possible 4-6mm mets to chest-too small to biopsy. Doing dose dense ACx4 then Taxotere+Herceptin dose denseX4, followed by a year of Herceptin. I would like also to know about "outcomes" - excuse me as I am feeling a little sick from my first chemo. Roxanne

[Cathya]

Roxanne and Shawn;

Boy it just breaks my heart to meet you both here. I know that this is one very scarey disease and it is easy to get disheartened...... but you are here now....with so many fighters and survivors.... and surrounded by the love of others who truly understand. I am going to start a new thread for you both to get other ideas. I hope you don't mind.

Cathy

[Cathya]

Roxanne and Shawn;

Thinking about it I feel it would not be proper for me to copy your personal comments to another thread. If you would like to though it might be interesting to see the comments by other stage 3er's. I must leave now to drive an hour and pick up my daughter. I can only assure you that you will meet many friends here with shared concerns, gain lots of insites and knowledge and learn how to deal with this beast. God bless.

Cathy

[RoxE]

Cathy,
Thank you VERY much for your support. Copying comments could only help me. My problem (besides the obvious) is figuring out how to manuever around these boards. I am very grateful for the opportunity to be able to express feeling which I can't yet verbalize to family. Hope you had a safe trip and a great time with your daughter.

[Andi]

I just read your post. I was diagnosed with Stage 3C BC last July. I had a lumpectomy, my tumor was 2.9cm with 17 of 20 nodes positive. Estrogen +, Her2+++, grade 3. I took dose dense A/C followed by 12 weekly Taxols + Herceptin, then started Herceptin once every 3 weeks (which continues until Sept - 1 year of herceptin) and tamoxifin. I also completed 6 weeks of radiation Feb 28. I met with my onc on Friday and had a great review. I actually feel so much better than I did last year at this time. My onc always told me exercise is the best fatique fighter, just listen to your body and don't over do, so I continued to walk everyday, even if it was a little bit. I am planning to walk in the SBK 3 day walk in Arizona in November, I walk 5 miles in the am and 5 miles at night, and have worked up to 7.5 miles in a single walk.(I have a ways to go, though, the walk is 20 miles a day for 3 days in a row). I also always made sure I drank plenty of water with my chemos, once I didn't and I felt really bad. As far as the herceptin, I have not had any side effects with it.

My advice is to hang in there, take each day as it comes, there will be some days you don't feel like doing much of anything, then others you feel so much better. I feel like I have been given a second chance at life and plan to make the most of it.

[callen03]

Lucky4x, your post was very encouraging to me. I was just recently dx with Stage IV BC.

I have a question about Herceptin, for those who are knowlegable. Do you have to stay on Herceptin for it to keep working or do you get off of it after awhile. The reason I ask is that my doctor says I will be on it for awhile longer than my chemo, but he never mentioned that it would be ongoing.

[RoxE]

My doctor told me I would be on Herceptin for one year. I am going to a meeting next week and will try to find out more as there is an onc who will answer any question in an open forum type setting. They may not have research past one year - dont know. I also am curious to know if its better to be HER2+ or HER2+++, as far as responding to Herceptin. So much to learn so fast. Where is West? Ft W. here. Best to you!

[callen03]

Roxanne, please let me know what you find out about the Herceptin. I live in a small community about 10 miles north of Waco. The town name is called West.