feeling wobbly today

emmastarr · 02-01-2011, 11:17 AM

Have been feeling a bit wobbly today. I'm really worried about the future, particularly for my little boys, Louis(4) and Noah(2). What stresses me out is that my Onc does not do scans or blood tests unless you become symptomatic so how do we know how things are going or if the treatment is working? Anyone know what the 5/10 year stats/chances of recurrence are like for people with a similar diagnosis to me? I go back to work week Monday, am so not mentally ready for that.

Delaney · 02-01-2011, 12:59 PM

I wish I had your stats. I think you have a great prognosis based on those but I do understand your fear. But I think as time goes on you will get more confident of living a long life with your little boys. Before you go back into the workforce, pamper yourself, do something you really like, you deserve it. I wish you all the best.

LoisLane · 02-01-2011, 02:11 PM

Emma I cant think of any better stats than yours. Stage 1 Grade 1. It is hard after treatment is completed because then we start to wonder about recurrence. Try to stay strong enjoy your little boys and live your life. It is true that oncologists dont do regular scans etc. Here in Canada that is the protocol. they dont want to put you through unnecessary testing and scans unless warranted. If you ever have symptoms that bother you for a while just speak to your family physician, dont worry about bothering them with questions that is what our health teams are for. Try to relax (I know easier said than done) and keep living your life. You will see those little ones grow up before your eyes and before you know it they will be away to college or university. take care. Lois

Mary L · 02-01-2011, 02:34 PM

Emma, It's hard in the early stages of recovery to not worry about reccurence. We all go through that. Unless you really don't feel well or have a specific sympton they do not do tests. You have a great prognosis and I know you love your children. You will be there for them. Maybe it is a good thing to go back to work and get your mind off your cancer. Please know it is normal to be scared about the cancer retuning but your little boys need you and you need to go on with your life. I wish you the best Emma. Mary L

Becky · 02-01-2011, 03:10 PM

Trust me, your stats are excellent! You will be around for a long, long time!!

My stats were much worse than yours (with positive node) and I am still here and doing well and so will you.

suzan w · 02-01-2011, 03:23 PM

I agree, your stats look great! For us Her2+ folks, herceptin has worked wonders (miracles) so you are in a club with lots of positive results!!! xo

DonnaD · 02-01-2011, 03:38 PM

You have a right to feel wobbly. You surgery was not that long ago. Believe me; it gets easier as time goes on. Your stats are wonderful! I am much older than you and my kids are grown. I am enjoying being a grandma. Your kiddos are young. It is normal to think of the what if's. Herceptin is our miracle drug. Because of it you too will see grandchildren.

Many of us who are years out with no reoccurrence need to stay active on the board. I will do better. Many of our sisters are fighters and perhaps that is what many read. So many are doing fine and are on with life.

I know what you mean about scans not being done. I am hoping after June I will no longer need scans. I had some rib issues and my onc has been on top of things for years with CT's and bone scans. I think it is more stressful to go through scans than wait for symptons to appear. Just be on top of things and let you onc know if anything is not normal after two weeks.

Enjoy your children, and enjoy each day. Private message me at any time if you need a "pump up".
Donna

tricia keegan · 02-01-2011, 03:49 PM

Emma as everyone has said your stats are great, I too had positive nodes and am still doing fine.

The reason they say they don't do regular scans without symptoms is that it's unlikely it would affect prognosis or treatment in find any mets earlier than that. I really don't know if thats true but it's what I've read many times, if I have a problem for longer than a few weeks my onc does order scans etc....you will get more confidence as time goes by

Jackie07 · 02-01-2011, 06:40 PM

Emma,

Grade I is not as fast growing as Grad II or Grade III. I'm glad you've caught it at such early stage. The Mastectomy and chemo should take care of it.

However, because you are diagnosed at such a young age, you might want to consider genetic counseling and perhaps take some preventive measures.

I was the first person in my family to have been disgnosed with a neoplasm - my life-long 'benigh' brain tumor (now reclassified as grade II) was diagnosed and surgically removed when I was 30. The next 20 years, while I was dealing with recurrence and another cancer diagnosis (breast cancer), my Mother (Non-Hodgkins Lymphoma dianosed when she's 75) and my 2nd Brother (Colon Cancer at 58) also joined the rank of cancer survivors.

The genetic testing I requested more than a year ago did find a tiny 'Variant of unknown significance', so I underwent prophylactic hysterectomy/oophorectomy January last year after learning of 2nd Brother's cancer diagnosis and treatment.

I know the last thing in your mind is to have another procedure done. But I'd strongly urge you to gather your family history (parents, siblings, gradparents, cousins...) and request for a genetic testing.

sassy · 02-01-2011, 07:24 PM

Hey Emma,

There are a lot of still us around and going strong with stats far poorer than yours. Look positively to the future.

Don't let today's worry rob you of tomorrow's joy!

Jean · 02-01-2011, 11:01 PM

Emma,
Chasing after two young children plus treatment and working outside the home....you are amazing!!!!!

It is so very normal to feel the worries soon after you have completed treatment. It takes time to seperate from your treatment and feel safe. I will be approaching my 6th year shortly and you will also! I remember well the fear and concerns of the first year or two. We as women worry about our children and families 24/7.

Your stats are similiar to mine. I had a grade 1, er+
pr- (not many in that subtype). Keep in mind that herceptin has changed the landscape for us. Is your dr. treating you with anything for the er+? That is another weapon to keep you free from recurrence.

I truly understand how you feel even though your stats are very good you still feel the worry. Just remind yourself you caught it early, you had herceptin and you are doing all you can to eat a healthy diet, get rest and LIVE....believe me you really will enjoy the days once again. Be patient - you were hit hard with a shocking dx it takes time for our minds to wrap around the fact that we have had treatment and will survive.

Soon enough you will be posting your cancerversary
to us...of 2 yrs. then 3...4,5,6, 7, etc. etc.

Wishing you peace and joy.
Hugs,
jean

Trish · 02-01-2011, 11:28 PM

They are good stats as everyone has said. Good on you for getting on to it so quickly. It is not surprising you would be feeling a bit wobbly on the verge of a new stage of your life. I always find the transition between one stage and another the most unsettling time. Good luck with your return to work. I hope once you have settled back you may feel a little more normal. I'm sure Louis and Noah (great names) will have you for a long time to come.
Trish

02-02-2011, 01:00 AM

Thank you so much ladies for your posts, you made me feel so much better.
To Jackie07, yes, I am going to go ahead with a risk reducing mastectomy on the other side in about 12 weeks time. I have asked about an oophorectomy but my Onc thinks it's a bit extreme and doesn't think it is a good idea for someone of my age. I had the genetics test done which came back negative. Does anybody know anything about Becker implants? My recontructions options are silicone implants/becker implants because plastic surgeon says that I don't have enough tissue/fat for a TRAM or DIEP flap procedure. Any advice gratefully received.
Thanks

Debbie L. · 02-02-2011, 08:45 AM

Have been feeling a bit wobbly today.

Emma, this is the time most people feel the most wobbly. Diagnosis and treatment-decision time is also hard but it has a different feel -- a moving-forward feel. Then treatment is grueling and there's so much happening that we use all our energies just to get thru it. It's typically when treatment is over and all the hubbub dies down that some of the hardest parts (emotionally) of the whole thing begins to hit us. And unless we have others to talk to who have been there/done that, it's also the time that most people in our life expect us to "be all better" and "over it". Well, we're not. We never will be entirely over it but this time right after treatment ends is the hardest time for many. And the difficulty (imho) has little to do with how favorable the details of diagnosis were (or weren't). Regardless of prognosis, this is our time to let it all sink in, regroup, and find our new normal. There's no one right way to do that -- you'll figure out the best way for you. But it's normal for it to be a time of turmoil.

What stresses me out is that my Onc does not do scans or blood tests unless you become symptomatic so how do we know how things are going or if the treatment is working?

One way to look at this is that scans and blood tests will not prevent or control a recurrence, they will simply detect it (it will happen or not, regardless of whether you are tested and scanned monthly or never). Except in a few rare instances, a recurrence would be just as treatable if found by symptoms or by tests before symptoms. Those rare instances where it might make a difference would typically be brain mets (rare for that to be a site of 1st recurrence) and small liver mets. If you really felt strongly about this, and you are rich, you could probably find a provider who would go along with scans of these sites but then how often would you want to do that? Yearly probably wouldn't be enough. It's a roller coaster lifestyle to endure all those scans (and all that radiation), most would not choose to live the rest of their life that way (but some would). As you'll see from responses here, most of us have the same kind of follow up after primary diagnosis (report and investigate symptoms) as you do.

Anyone know what the 5/10 year stats/chances of recurrence are like for people with a similar diagnosis to me?

Your onc should have told you that, if you want to know. Since you have some pretty rare details of diagnosis (grade I for HER2+ is unusual), there won't be a study that included lots of cancers just like yours, to give you the stats you desire. Probably you can take the stats for overall stage I and know that your individual odds are even better.

There's nothing we can say to make you less wobbly right now. Wobbliness is normal at this point. You will work through it, just like you worked through diagnosis, and treatment. You've done a lot of hard things already, this is just one more part of the process. Be gentle with yourself, talk to people who understand, and forgive those who don't (they can't help themselves).

Love and good thoughts,
Debbie Laxague

emmastarr · 02-02-2011, 08:48 AM

Thanks for that Debbie

emmastarr · 02-02-2011, 08:51 AM

I made a bit of a mistake earlier and forgot to register before leaving a message....what a plonker!
Thank you so much ladies for your posts, you made me feel so much better.
To Jackie07, yes, I am going to go ahead with a risk reducing mastectomy on the other side in about 12 weeks time. I have asked about an oophorectomy but my Onc thinks it's a bit extreme and doesn't think it is a good idea for someone of my age. I had the genetics test done which came back negative. Does anybody know anything about Becker implants? My recontructions options are silicone implants/becker implants because plastic surgeon says that I don't have enough tissue/fat for a TRAM or DIEP flap procedure. Any advice gratefully received.
Thanks
Yesterday 10:28 PM

Hopeful · 02-02-2011, 10:36 AM

Emma,

I attended a program for cancer surivors of all types two years ago at the hospital where I had my rads therapy. One seminar, on fear of recurrence, was run by two oncology nurses. The information they provided was that the anxiety over recurrence greatly subsided after two years (they had research on this). They did not know what the significance was, it just seemed that that was the period of time the psyche took to adjust and move forward. I see that your two year mark is not that far away. So, hang on, it does get better.

Best of luck to you,

Hopeful