new to this

[les]

Hi I'm new to this so please excuse my mistakes. I was treated for breast cancer 1.3cm tumor her2 pos er pos no nodes lumpectomy .a/c chemoand radiation now the only treatment is tamoxifen for 5 years. I had a clean mamogram at 3 months now looking to have another in march. My dr. isn't doing blood test or any scans should i ask for tests? I'mworried because the onclogist told me I looked great what does that mean I looked great when they told me I had B C too. I'm wondering what I should ask for? help I 'm not feeling very well my energy isn't coming back and my DR.s don't seem to care I.m only 47.

[Kristen]

Les,
Unfortunately, ASCO, doesn't recommend any other scans to be run, unless you are symptomatic.
I talked my Onc into at least running Tumor Markers every 3 months when I see her with my blood tests. It may not help, but it gives me peace of mind. My breast surgeon, however does run a mam every 6 months and my nerurologist does a MRI every 6 months of the brain. They should be at least doing a chest x-ray once/year. Between the 3 of them, I see them every 3 months and they are scattered. I had Herceptin, so I did have Muga scans.
The hard part is trusting your body to tell you that something is wrong. I looked and felt fine also at dx. I look great now, but it is scary to be out there all alone sometimes. There is some comfort in going to treatment, I felt that as long as I was there I was safe. The advice that was given to me, is that the longer you NED, the less you will think about it. Now, it probably goes through your mind every minute or so and with time, it will be farther in between times.
The other part of this, is what does the new normal feel like? I have no idea. I will be seeing my onc in March also, for my first follow up.
What I have been told, anything that is bothering you for over 2 weeks should be seen by your onc.
What you are feeling is very normal and with time it will pass. In the mean time stay vigilant and keep on top of it. They say you will know, but others were asymptomatic and had mets. Have your onc, do blood tests at least every 3 months for the first 2 years and then it goes to every 6 months up to 5 then every year after. All us newbies are feeling the same as you are. Sometimes I am racked with fear and other times I feel just fine.
About the loss of energy, are you walking and trying to build up stamia? I still get tired and all blood tests are in range. They pump you so full of chemicals to keep us alive that there is going to be some side effects and justs try and do the best you can. There are sites, like WEBMD, that can give you advice on what you can do post chemo. Good Luck les. Take care K

[Linda in Calif.]

Hi Les: Kirsten had some excellent advice for you....to add mine to it, I would say just give it some time. I was 49 at time of DX. It was at least a full year after chemo and radiation before I felt almost back to normal (some of my joints STILL ache two years later). I sometimes get very tired late in the day and often fall sleep watching TV in the evenings....something that I didn't used to do. I don't know if this is due to the long term effects of the chemo or just that I'm 2 years older. It will take you some time to get your confidence back as far as your body and cancer is concerned. Every little pain or cough makes you think the worst. The rule of thumb is if something lasts for more than two weeks you should call your Dr. Of course, if something MAJOR happens (like chest pain, difficulty breathing, unusual bleeding) call right away. My Onc. also does not believe in doing scans once you've reached NED. I told him for my peace of mind I needed "SOMETHING" so he does Tumor Markers every 6 months and a complete blood panel. Once a year I get a chest x-ray. Many at this site recommend having a brain scan done once a year even if you have no symptoms. You've been through a difficult time and things will never be like they used to be. There are no guarantees in life, what you need to do is make the best of WHATEVER time you have left, weither it's 10 months or 10 years. Keep on posting and asking questions...this group of people at the HER2 Support Group is very knowledgable and willing to help whenever you need it. Take Care, Linda in Calif.

[*_les_*]

thank you Kirsten and Linda your posts made me feel much better about things It is hard to trust that you will know if something is wrong but I guess that takes time.god bless you thanks les

[pauline]

I agree with all of the above!

I have also been wondering about follow up. I see my oncologist again in May, I finish the Herceptin trial in June and tho I know I'll be having MUGAs and mammograms after that, I'd still be interested in seeing what other tests I can swing my way.

Les, like you, my nodes were negative. So be reassured by the fact that all the treatment you had afterwards has been to ensure that anything alse that was lurking about has been severely dealt with!! Listen to your body and if you feel there is something worrisome, then have it checked out. Chances are, it will be nothing. And there's so much info out there about diet, nutrition, exercise etc-all the things we can do for ourselves to help keep the immune system pumped and efficient and also to restore our bodies after what they've been thru.

A book I've found helpful is "Living beyond Breast Cancer-a survivor's guide for when treatment ends and the rest of your life begins" by Marisa C Weiss and Ellen Weiss. There's also a website www.lbbc.org.

I found that while my energy levels have picked up (I'm doing more exercise, can work in the garden longer, walk the dog a bit further!), I'm still really tired by the end of the day and often doze off in front of the TV, like Linda does.

It'll take a while, but give yourself some time and be kind to yourself. After all it's not only the physical, but the emotional recovery that can be really tiring. I can go for a while and not give it a thought and then suddenly, it'll all come to the fore again, I get scared, my imagination runs wild, I won't sleep well for a couple of nights and there I am-tired all over again. However as time goes by, I'm thinking it'll be more and more like old news.

So-do good things for yourself and remember-you are not alone!!

Good luck and all the very best!

Cheers
Pauline

[Peggy]

Both Linda and Kristen said just about everything I would or could tell you. I was always extremely active before and during treatment. I was used to running 9 miles a week and managed to keep that up through most of my treatments (chemo & radiation). When all that was finished the fatigue set in big time and some days I just had to take a nap or just completely veg out in front of the TV - too tired to even read.

But all that goes away with time. You have to try very hard to really enjoy everyday that you feel well. Yes, we might die from the cancer, or we might die from something else 15 years from now. NOBODY knows what tomorrow brings. Just about everyone could dwell on some problem in his or her life but then you only cheat yourself out of another day. Do all the things you love - shop, listen to music, garden, exercise - whatever it is - enjoy yourself. You deserve it.

Peggy in Florida

[Ginger]

I am going thru almost the same situation. Neg nodes 2.7 cm chemo/rad done end JAN 2004 (1 year ago). I am also concerned about lack of tests altho think I will be switching to Arimidex from Tamox soon. I am looking into changing to another Oncologist just to get some tests however its hard finding the energy / time to get anywhere with that. I complained to my gyn about breast pain so I did manage to get a 6 month Mamm otherwise they are doing annual Mamms. He (my gyn) will give me a PET scan if I want it. So, with Neg nodes as someone earlier said the normal course is no testing apparently unless you have some kind of symptoms.

All good advice to you so far. I just started checking this board and think it is an excellent place to keep checking - well worth the time both for the information and emotional / moral uplift to realize that you are not alone. Tho friends/family can be supportive they can't really offer much advice when they haven't been thru it themselves.

Good Luck to you. Just thank your lucky stars that you had Negative nodes, and NED (no evidence of disease) and keep asking your doctor if you want tests or perhaps check into other dr's. I think the SusanLovemd website is a good place to start for some answers....the FAQ section answered a lot of questions I had about tests tho a lot applied to both HER2 neg and pos. You might want to see if you had a FISH test done to determine more about your HER2 status - I am going to be checking into that for myself. Best of Luck.

[Ginger]

Forgot to mention on the tiredness I agree that it takes about a year to start to feel more like normal. And I also feel really tired at night sometimes still. I just can't do all the things I used to do and taking the time to eat good things takes up more of my time than before the diagnosis. I think for me just telling myself to eat right, take care of myself and let the rest of the stuff go helps. Also letting other people know they can't expect you to have much energy for quite some time even tho your treatment is over. This has done considerable damage to my social life.

As a side note when checking this board I found that if you click on AddReply it will come back with a list showing all the replies to a topic so that you can read them all at once instead of clicking on each one.

[Sheila]

Les and Ginger

The important thing is to be aware, and if something feels strange and doesn't go away, get it checked out. I too had neg nodes and that gave me a false sense of security for a year and a half until I had a recurrence in the nodes in my neck. I thought how can this be? I had neg nodes and a very small tumor 0.7cm.....so enjoy life, just be vigilant on getting tests on anything that doesn't seem normal....you will be your own best advocate.
Hugs
Sheila

[susie]

If you are er+ too, and premenopausal, I would ask about having your ovaries removed. Also new studies are showing that tamox for five years is not as effective as tamox for three years and then two years on Femara.
Also herceptin with a hormonal seems to work well with Her2.