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

[Cathya]

Shawn;

Have you discussed your dizziness and aches with your oncologist? If you have any symptoms which last a couple of weeks he/she would want to know about them. Are you getting enough protein? Start a new thread about this and bring in others to the conversation. Just cut and paste your original comments or this last one and start a new thread. Many on this site and very knowledgeable about nutrition and the effects on our bodies from the chemo and radiation. Also, many of us ache. There are so many nerve endings which have been cut and need to heal. This process goes on a very long time. We must ask some long term survivors if they still ache or if it ever totally heals. You are obviously used to having a well oiled machine of a body. Perhaps you are pushing yourself too much in an attempt to get back into physical shape again. Don't lose hope. Search out Gina's posts online. She is also ER/PR- and was diagnosed in her early 30's. Although she had mets she has totally controlled her disease for the past 6 years I believe by using herceptin, supplements, diet and monitoring her tumor markers. If her markers start rising indicating active disease she gets a booster of herceptin to knock them down. I am very much over simplifying here but she has taken control of her disease and empowered herself. Others on the site have done the same thing using means that work for them. Read posts by Lani, RB, Rhonda on diet and many others. Take heart and don't lose hope. We are all here for you.

Cathy

[Cathya]

Shawn;

Also, some on this site who are stage 3 are taking herceptin for 2 years instead of one. There are trials going on now about this. Being off herceptin would be very scarey....actually it is scarey (I've just been taking off)... but you could develop a plan using tumor markers to monitor yourself.....or you could join one of the vaccine trials as some on this site have done. Lolly has had the vaccine... do a search for her posts and you will learn about it. Also, go to the clinical trials page. We do not have to sit around waiting for a recurrence.

Cathy

[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.

[lucky4x]

Hi ladies.

I hope you don't mind my jumping in... but Cathya... you have been so wonderful, and informative, and I don't even know if this will help or hurt on this topic. BUT...

I am a 4 time survivor. I was first dx 6 yrs ago at age 42.

I feel great. I look great ( if I do say so myself)... and I have tons of energy. I have had chemo twice, and bilateral mastectomies with reconstruction.

My latest dx was back in Aug 2005, with mets to lungs. ( THIS IS NOT LUNG CANCER... IT IS BREAST CANCER CELLS FOUND IN THE LUNGS).

I am on only Herceptin now, and the spots originally seen are gone. I have had "complete response" to Herceptin.

Herceptin equals HOPE.

I think about the "what ifs" also....but it is easier to just live each day, thinking about what I am able to do NOW, and doing it.

Cancer is scary. Very scary. But try not to really WORRY about it ALL the time.
If it comes back, you deal with it. Recurrance does not mean a death sentence in any way, shape, or form! It means it came back... you need more treatment, or surgery... you do it, you deal, you move forward.

I am taking part in the 60k walk for breast cancer... I am the captain of my Relay for Life team, and I walk about 5k every day.

YOU CAN DO THIS... maybe not now.... but eventually.

Stay strong ladies. You have many survivors holding your hand.

Question for you ladies who have been on Herceptin and taken off it.

WHY did they take you off it? How long were you on it?

Lucky4x

[Shawn]

Ladies,

I am very touched by your response, Friday I had to be driven home from work because I was feeling so bad. It was my first full 40 hour week and I feel humilated. What really scared me was the feeling of total exhaustion, like I would fall down and couldnt walk straight. Your totally right about never being sick before. My aunt is an onc, and she has been very involved in my treatment plan. In December my health coverage will come to and end due to divorce. I will have finished my treatments by then. Probably another reason I am so worried. I will try to do the new post thing since everyone is in aggreement.

As for my Onc, she said there should be no side effects from the herceptin now. I have been off toxic chemo's for 2 months and radiation for a month. I thought I would feel better now and back to normal, but I dont.

Shawn

[Cathya]

Shawn;

I know exactly how it feels....the work thing. The first day I was back I couldn't remember the easiest things and felt so vulnerable that I broke down (by myself) and I had lots of time off and an easy, part time transition. You are not only weak physically but also mentally I found. You are so lucky to have an aunt who is an onc....lol....that sounds funny.....but wow that is truly wonderful. There are a couple of strings on this site from other men by the way. I remember at one point a while back they were trying to find each other. We will ALWAYS be here for you but they might help you as well. I understand that whenever a man is involved the bc is definitely genetic so are you undergoing any genetic testing?

Cathy

[Shawn]

Cathy,

Thanks for the support again, I am pushing too hard. I want everything to be like it was before diagnosis and thats just not possible. I also forgot that people assume I am male because of my name. I am a 39 year old female. It is great having an Aunt for an Onc. She pushed my Onc to give me the latest chemo treatments, even though the hospital I go to was not on the protocol. Thats the only downside, when she disagrees with my Onc because she has her direct phone number and will call her right up!
The other point for me is that one tumor was ER,PR negative Her2 3+, and the other was all negetive.(scary).

So I think everything is metastis and I feel like I am crazy and not enjoying my life. How is that for putting it out there! Hey if I cant be honest here, then where can I be, right?

Thank you, thank you, thank you!!!
Shawn

[Cathya]

Shawn;

I am sorry! I did think you were male.....you're not ShawnA? How interesting. I am sorry to say that life will never be the same again, but you will enjoy life again and you will be happy and you will have days that you don't think about having bc. I find it so crazy, bizzare that we can actually get used to anything....even this. That fear of recurrence is one we all have and every ache I feel I feel the same fear as you. You are right....here is the one place you can be yourself.....we do understand.

Cathy

[Cathya]

Shawn;

Thinking about your triple negative tumor I remembered Dr. Carney's post (near the top of the listings) when he was talking to us about the Bayer Her2 Serum test which he developed. I am trying to get this test here to use it to monitor my serum her2 levels. Perhaps herceptin will work for ALL of your cancer cells? You might find this of interest and discuss it with your aunt. Dr. Carney said:

"There are a number of reports that patients can be HER-2/neu negative by IHC or FISH and have an elevated serum HER-2/neu. This can have a number of reasons. One reason is that the original biopsy showed too few HER-2/neu positive cells to score the specimen positive. This iisn't a mistake by the pathologist but what is seen under the microscope. With respect to IHC, a pathologist scores the patient as HER-2/neu positive if greater than 10% of the cells seen under the microscope are 3+. It is certainly possible that someone who has 5% IHC 3+ cells at the primary diagnosis is designated HER-2/neu negative according to the guidelines for scoring patients. It is also possible that these HER-2/neu positive cells are the ones that spread to other parts of the body and grow. As these HER-2/neu positive tumors grow they can shed the HER-2/neu fragment into the blood. As the tumor grows and goes to more sites, the concentration of shed HER-2/neu can build up to detectable levels in the blood. We can then detect the elevated levels in the serum of the patient with the test. I think it is becoming clear that someone with an initial HER-2/neu status of HER-2/neu negative should be re-evaluated. An elevated serum HER-2/neu can then be used to go back and test the primary tumor again or to test a metastatic lesion. If either the primary or the metastatic lesion is now HER-2/neu positive by IHC or FISH the doctor can consider Herceptin for the patient. At this time, the serum HER-2/neu test is not approved to place patients on Herceptin but it can be informative."
Cathy

[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.