Support.............................

[Mary Jo]

Good Morning,

I guess today's post is just about receiving some support. I'm not sure why since I'm 1 year and 3 months post diagnosis. Treatment (chemo) has been done since Nov. 30th and herceptin will finish up Oct. 11 (maybe I hit the nail on the head- huh?) Anyway, lately, been reading a lot about her2neu cancers - their aggression - our prognosises that sound so negative and find myself worrying more and more about recurrence. (maybe I'd be best to not read all the "stuff") They say "watch for symptoms" - well geez, don't we all have "symptoms" as we watch and worry. My oncologist (a breast cancer survivor also) doesn't do all the scans etc. She believes in the "we don't go looking unless there is reason" approach AND I agree with her as I would worry if having that stuff all the time. She says there are way too many false positives and most of the time you are checking this and that for no reason and all that is accomplished is incredible stress on the patients part. How true. So my PET scan at the beginning of my journey is it unless of course another is warranted.

I'm sorry for my negative post - is just feeling a bit "down" lately as I think about going through all this again someday. I try to trust and acknowledge what I know - which is - God and that what will be will be - and most of the time I am ok with that but possibly coming up on the end of my herceptin treatment is scaring me a bit.

I guess I should concentrate on the fact that my breast cancer was found early - before any mets - and that I handled chemo and herceptin well and NOT look ahead beyond the "day by day" mentality.

Thanks for listening everyone. I know we all go through this from time to time - it's the "nature of the beast" I guess.

God's Peace I pray for us all,

Your "sister" in the journey,

marejo

[alicecallahan]

Marejo

I feel your anxiety...same date of diag. as you, stage 3, NED since before mastectomy in Feb, still on herceptin, but asked my doctor for a tumor marker as I had a good friend in similar situation get liver mets, and the marker came back slightly elevated, so now I am on pins and needles (more like knives and daggers !!) awaiting results of scans.....terrifying....dont know who to tell and who to spare, as I have a large family/friend support, and my poor 70 year old mom who I know is having the hardest time of all, but pretends to be stalwart...
sort of regreting that I even asked for the test...didnt really know what the protocol is for follow ups, I figured if I didnt ask for it they may have waited until Jan when I finish with the year of herceptin...I am especially discouraged as I was told by so many others that herceptin is this miracle, when , in actuality, its just 50-50.....I guess every onc. has their differing opinions about doing blood tests and in what time frames....

[rinaina]

Marejo, you are so right when you say we all go through this from time to time and I think that during certain key times we definitely experience all that you are feeling now. I just had my second herceptin and already worry about whether it will make a big enough difference and then what happens when I am done with the herceptin tx. Some on here continue on herceptin for longer than a year which I don't know too much about...like why some do and some don't...perhaps if there is a history of mets they stay on longer. I also worry about whether or not I will be able to remain on herceptin because I have had swollen ankles and an elevation in blood pressure since starting it, and if I have to stop it, then what? So much to have on our minds it's no wonder we worry from time to time. My onc doesn't believe in doing scans either unless there are symptoms and I never even had a scan of any type prior to tx. This concerns me and so does the fact that I have never had any gene testing either. I read about all these tests that can determine all sorts of things. As you said, I guess we have to have faith and live our lives as normal as possible and keep as busy as possible. There is something to be said about reading too much. I have always wanted to be as educated as possible on this subject but sometimes it does get a bit too scary. Keep in mind that most active members of this forum are those who are still dealing with mets or reoccurences. Most her2 patients who are NED aren't active on the forum because they are okay and don't need the support. I hope you find a way to relax a bit and have positive faith that you have done all you can to fight this disease.

[sabpri]

I don't know if this helps, but I am in the exact same boat as you, and behind you by one week (diagnosed August 2005 and finished chemo December 5th). I will also be off herceptin mid-October and have been a total emotional basket case in the last month. I have had another terrible day today, trouble concentrating at work, freaking out about how I will deal with a recurrance if it should occur. Some days the anxiety just gets me in such a tizzy I can't think straight.

I thought I was doing so well and had a great summer that I decided to enjoy, and now I am hitting a wall. I don't know if it is because I am coming off Herceptin, or it is the fall season and it is reminding me of horrible state I was in last year and how I just don't know if I could ever go through that again and then the fear starts all over again. As a matter of fact, I picked up the phone and called a therapist on my insurance plan that deals with health issues and anxiety. I think I might need some kind of counseling before I get deeper in to this hole. I know I am not a big help, but wanted to tell you that you are not alone in your worries and I am at the same point in time post diagnosis as you are. Maybe it is the season!

Natalie

[tousled1]

I think we all get the anxiety thing going at some time or another. Whether it's related to going off or coming near to the end of Herceptin I don't know. Yes, Herceptin is a miracle drug for us HER2 women but it doesn't work for everyone. As for tumor marker tests, MRIs, PET/CT scans my oncologist will order them for me whenever I ask. My last visit I had blood drawn for the Bayer Serum test and hopefully will get the results on Friday. All of us here have the fear of recurrence and have a constant reminder that we are fighting a dreadful disease. We all try and maintain a positive attitude and hope for the best but alas the anxiety just creeps in. All I can say if that when you need support everyone is here for you.

[Leslie's sister]

Marejo- You are an awesome, uplifting person. I can not thank you enough for the support and compassion that you have offered my sister Leslie. She speaks of you often and feels a definite bond with you. Thank you, thank you, thank you, thank you. You were and continue to be the answer to my prayers for Leslie. Because you have been such a rock for her, it is hard to imagine that you are scared as well. Of course you are. This dreaded disease is awful. I hate it. I still struggle with fear over what lies ahead. But I focus on all the positives now rather than the negatives which drag me down. You caught it early, you were proactive in your decisions regarding surgery and treatment. Herceptin is a miracle drug that wasn't available all that long ago. This support group is incredible. I used to spend countless hours searching the internet looking for information on this awful disease. Now I feel confident that if there is something new out there, this group is going to know about it. I still search the internet but not with the same urgency that I might miss something, something that would help my sister. This group is already all over it. It is easier, I think, to feel like you are doing something during the treatment process- chemo, herceptin, radiation and though we look forward to the end, when it comes it is like ok now what? Sit around and wait for it to come back? No way. I believe that each one of my sister's chemo treatments is killing whatever fragment cells might have been left behind after surgery. I believe that herceptin is the back up and any stragglers don't have a chance. Marejo, you are in my prayers as well. Let our Lord and His amazing love uplift you. "He knows the plans He has for you, plans of peace and not of evil, to give you a future and a hope" Your sister in Christ, Lisa (Leslie's sister)

[Mary Jo]

Hi Lisa,


Thank you for the wonderful post. It truly has been a blessing "meeting" your sister Leslie and I thank you for the connection.

Yes, I do get scared as well. (smile) - I don't think I'd be human if I didn't. BUT as you said, the faith and confidence we have in our Lord's plans for our lives is what gets me through day by day. A few of the versus from the Bible have truly inspired and kept me through this journey. Here are a few:

"for I know the plans I have for you says the Lord, plans to give you hope and a future." Jeremiah 29:11

"all the days ordained for me were written in your book before even one came to pass" Psalm 139:16

"for we know that in all things God works for the good of those who love Him and were called according to His purpose" Romans 8:28

They all bring me comfort and gently remind me that God is in control. He knows. Nothing comes to us that hasn't passed through Him first. He knows why and we have to trust in that.

Sometimes though, days can be hard. That's typical for all of us - no matter if there is cancer or not - but this cancer can be a nightmare in itself at times.

So thank you Lisa - your encouragement and love means much!

Your sister in Christ Jesus,

Mary Jo

[Christine]

Marejo
Some Onc's believe no scans until symptoms; and others are more aggressive. I don't know your dx, etc., but if you are not comfortable with her procedures, you can ask her for the simple blood test called the her2serum test every few months to monitor your progress. There are tests that are called cancer markers, but not all Oncs like to do them because they are not reliable all the time, But can help the oncologist as a monitoring tool. Ask your oncologist to reconsider giving you the her2serm test by Bayer. I do feel it is a worthwhile test if used properly to indicate remission during chemo and ALSO progression afterwards. Well wishes
Hugs,Christine

[Mary Jo]

Hi Christine,


Thank you for your post. No, I do not want my oncologist to do all kinds of tests. I am comfortable with her choices as I think I'd go nuts with this test and that test and all the false positives along the way. But, thank you for recommending an alternative if I weren't comfortable.

What is hard to be comfortable with to me is just the learning to live within our "new normals." I am getting better at it but life will truly never be the same for me or any of us and THAT is the hardest part for me to accept at times.

For now I am cancer free and will rejoice in that. I feel great and look forward to many more healthy years. Possibly never a recurrence? But, only God knows what will be for me and for all of us SO I try to rest in that and take it as it comes.

Thanks dear "sister" and God's Peace be all of ours today.

Marejo

[Leslie's sister]

Mary Jo
You are so welcome. I am here for you any time. My email is: Rylar@mac.com If you ever need a shoulder to cry on or words of encouragement, please do not hesitate to contact me. You are a sister as well. Thanks again for being the wonderful, caring person that you are!

Your sister in Christ! Lisa

[Audrey]

Marejo,
I just read your posts today and wanted to offer my support and encouragement as well. I remember so well feeling the exact same way as you do when my Herceptin treatment ended. I was diagnosed in July 2001, at 36, Stage III, with large tumor and many lymph nodes involved. The prognosis wasn't good, but I was lucky enough to get Herceptin in a clinical trial and it really worked for me. I've just celebrated my 5-year anniversary as a survivor, and it does get easier! The hardest time for me, after the initial shock, was when treatment was over and then the onc. just shows you the door and says "I'll see you in 3 months"--you're just waiting anxiously to see what happens. I had such a hard time making any kind of plans, couldn't even think about the future, etc. But, I talked with a clinical social worker about these concerns and they are completely normal...I also started taking Paxil for anxiety, which helped me. Slowly, as more and more time passed, cancer became less of an all-consuming fear for me and I am doing great now--not the same as before cancer, of course, don't think any of us can ever go back to feeling carefree and invincible, but life is much richer now, too. Anyway, just wanted to say, hang in there, stay strong and keep the faith! Sending you a hug and my best wishes for many years NED.

[Mary Jo]

Hi Everyone,


Thanks for your posts. I feel better today. I guess those "fears" just creep in from time to time and hearing from others who have been their helps. I'm back on my "trusting" wagon and feeling better.

One day at a time.......................................with Jesus by my side.

Mary Jo

[Sherryg683]

It has been harder for me since I finished chemo in April, I have anxiety attacks often. I was diagnosed stage IV in December with 2 small lung mets which went away quickly on chemo. I am now NED but worry constantly about it coming back and going through the nightmare again. I worry most for my 8 year old daughter. My doctor scans me every 3 months and I like it like that. That way any aches and pains that I have are put to rest and I don't have to worry indefintely about them. I do feel like I am living 3 months to 3 months though. I just don't really like the wait till there's symptoms approach because I had absolutely no symptoms, if I had waited for symptoms I probably would have been eaten up with it. Yes, getting scanned so often is very nerve wrecking but I appreciate the peace of mind I get afterwards...as long as they keep coming out clean... ...sherryg683

[Mary Jo]

Hi Sherry,

Thanks for your post. I agree with you wholeheartily in getting scans after being diagnosed a stage 4. I did have a scan (PET) after my original breast cancer diagnosis and my cancer had not metastized. Since doing the chemo, radiation and now herceptin I am disease free and hope it stays that way.

It's funny how some of us would want scans often and some of us don't. Time will tell if I ever have one or need one but I'm praying for none and praying the cancer does not come back - haha - AS WE ALL ARE.

God Bless you Sherry and I pray your cancer stays FAR away from you.

Marejo

[sadie]

I am so glad I found this thread today. My onc does not believe in scans etc unless there are symptoms. I think I prefer it that way (not sure). I went for my annual physical 3 weeks ago and at that point is when I have become (off and on) an emotional basket case. (She is the same dr who found my initial bc). She said I had blood in my urine, so she sent me for a cat scan of my abdomen and pelvic area last week. The drs office has not called me with results yet. I found out they got the results 4 days ago. I called them late in the day today (Friday at 4:15pm) and left a voicemail asking for the results. They did not respond. I don't know what time the office closed. My imagination is working overtime now. I'm afraid that maybe they found something and maybe she (my primary dr) spoke with the onc about the results and since I have an appt with the onc next week Tuesday, the onc probably told her that she would give me the bad news. I know this is all my imagination at work, but I'm really scared now.
I have been terrible this past month. Could it be because Oct 3rd is my 1 yr anniversary? Could it be because my primary dr is the one that found the bc? Could it be effects of Arimidex? I don't know. All I know is I need a shoulder and some encouragement. I hate the waiting for the results. I have been so strong and positive-thinking up until a month ago. I'm afraid these emotional times will become more and more frequent. I'm afraid to feel confident; because then the let-down would be harder to take. Afraid to let myself be happy? Gee, do I need to see a psychiatrist or something? Are these normal feelings at this time? Will they go away after I get an all-clear on the tests? (I hope).
Is this how it's going to feel for the rest of my life (like I'm waiting everyday for it to come back?)
Thanks for letting me vent all of my fears. I just wish these feelings would pass so I could get on with my normal(?) life.

[Mary Jo]

Hi Sadie,

A HUGE hug I send your way. Your feelings are very normal. More normal than not if you ask me. This journey can definitely be a roller coaster ride. One day we are in the valley and the next we are on the mountaintop. Waiting for results is the WORST kind of valley and your fears are justified.

I pray for you that your results will be normal. Keep us posted.

marejo

[MCS]

well, Marejo, as you can see I'm a basket case as well. I'ts almost 5am on Saturday and I can't sleep. I'm not off herceptin yet but I do worry about will happen when I am.

I think the fear of recurrence can be high at times. To me, it's like there's no REAL uptime anymore for me- I'm either a little down or cautious but never free of anxiety.

As you come near the end of herceptin, I think it's a natural response. I'm sure you are concerned abut being proactive to cath anything as early as possible but the test can be quite exhausting and they wreck me emotionally for sure.

Also it's the fear that, if off herceptin, can your immune system fight any other new developments. That is what scares me the most. Now YOU ARE ALONE.

I'm planning on contacting some form of couselor becasue this is tough stuff to handle on my own. Just like the other ladies that wrote, I also have difficulty planning anything.

I hate the constant testing and waiting for results but if it buys me time and get treated then I can handle it. But I give up a week before and after the test with anxiety- like having a period again, a week before, during and after LOL.

The rest of us look up you who have finished and are carrrying normal lives. It's encouraging for the rest of us. So I appreciate the positive comments in this thread and the words of wisdom.

thanks

MCS ( maria)

[stephanie59]

This is one of the most depressing, yet not, threads I have yet to read. I am an 8-year survivor ER/PR+, HER2+++. I had 4 AC and 4 Taxol no Herceptin at the time or since because I do not fit the profiles. I read about all of you taking Herceptin and more Taxol than I did and rads as well and it makes me feel like a time bomb ready to go off. My onc also does not believe in test and scans without symptoms. The problem is I don't know what symptoms I am supposed to look for. My lower back has been hurting (not excrutiating) for months, but I just thought it was old age or something. After looking at this site for a few weeks, I called him and insisted on a bone scan and am waiting for the results as we speak. I have also had a CEA added to my blood tests (already get a CA-15) and am trying to the the HER2serum test as well.
What we have here is whether groups like this are a positive or a negative. Is it better to live happily in ignorance or with anxiety but be better informed? I know I have been a virtual basket case for the last few weeks when before I hardly thought about the cancer except to think I was surviving. The only thing you can control about recurrance is the ability to catch it sooner than later and I guess that's what we all hope will happen with scans and tests. Good luck to everyone, Stephanie

[sadie]

Hi everyone,
I know I said I was going to see my onc on Tuesday, but I confused it with my annual mammogram. Anyway, I saw the onc today; She got the cat scan results. She said the catscan looks good! (Yay!) Nothing showed up regarding the blood in the urine. Kidneys are fine (she didn't mention bladder,tho, but I'm assuming that was fine too).
She did say that the report mentions fibroid tumors in the uterus (which I think I've been told before). She said it also noted a 7mm spot on my liver . BUT she immediately told me not to worry about that. She said more-times-than-not, this means nothing. That is one reason she does not believe in doing scans unless warranted by symptoms. She said so many times spots can show up and it can be a blood vessel or something that has absolutely nothing to do with cancer; And this causes needless anxiety for the patient. But, she said that since this DID show up on the scan, she will do a follow-up scan in 3 months to see if it has grown, shrunk or stayed the same. Has anyone experienced this?
She also did a urinalysis to see if I still had blood in my urine after taking antibiotics. She was quite surprised when she saw that I never had a u/a done at her office since my initial exam last November. She said at that time I had bacteria in the urine.
Has anyone ever experienced blood and/or bacteria in the urine and have it turn out to be nothing?
I am fantastically relieved about the catscan results and at the same time still a little concerned about the blood in the urine. But for the most part, I am much better today than I was last week!
Thank you all for your input on this site. It's an emotional life-saver!
And thank you Sherry for relaying your personal experience to me. That made my week-end so much more enjoyable than it would have been.
I don't know what I would do if it weren't for this site!
Thank you all.

[CLTann]

We are all devastated in facing the unseen time bomb. It is almost like our facing the unseen terrorists, not knowing when and where they will strike. Many of our doctors' offices do not seem to help in consoling our feeling: slow and vague reporting.

It is our decision to face our lives with courage and determination. Do all we can to fight the disease, help each other in information and support. Live a happy life, don't let the disease or the imaginary disease be our master.

Take all nutrition aids and do the exercise so that your body can fight with its own immune power. Seek spiritual and mental help if you need support. I love you all and God bless all of us.

Ann