movin' on

moving on
Victoria-I am 3 years out from BC--had lumpectomy & rads--no chemo. I am still getting the mammos & am on the hormone therapy. I am currently 65--62 when dx'ed. I have had leg cramps & weight gain on the tamoxifen, but I am just dealing with it the best I can. (Also, hair loss, but I have very thick hair; eyebrows are gone, but I just draw them in every day.)
I have finally retired from my job (teaching) & I am doing what I want to do now--trip to Italy, becoming a master gardener, and volunteering for a few worthwhile causes.
I have had a few scares with "wonky" cells showing in mammos, but so far no recurrence.
I am going to stick with doing what the doctors tell me, but I respect your right to make decisions about your own health. Remember, we are always here for you!

Rague said:

We're all so different - Thankfully!
We are each so different! What is right for me, may not be 'right' for you. There is no way that I will not do everything that I can to fight the Monster. Only you can make your decisions. There is no way though that I will not do everything I can to fight. I feel I owe that to my loved ones (and myself).

I've been on Femara/letrozole for 2+ yrs and have had none of what you say starts "immediately". I can (and do) anything I want to. Yesterday I did a 10K Volksmarch up Crazy Horse Memorial. Was it a bigger challenge than the last time I did it which was 2 mths pre DX - you betcha - but I did it! I am who I am - not IBC. Just saying to assure that my QOL (Quality Of Life) at 66 y/o is not negatively impacted by my TX's. Only you can make your decisions of what to do with your life. Prayers!

Winyan - The Power Within

Susan

Different indeed
I was almost 49 when dx with stage 1 grade 1 IDC ( 51 now) had lumpectomy amd 3 nodes removed in March 2010, 4 rounds of chemo, finished July 2010 and 30 rads, finished September 2010. I took tamoxifen for 10 months. I then had my ovaries removed in July 2011 and switched to Aromasin, my Onc. thought this was a better trt option for me. I did have hot flashes (still do) on Tamoxifen but that was the worst side effect I had, was irritable at first but that passed quickly. I do have some achiness and joint pain on the Aromasin and the hot flashes continue, which started with chemo. I knew hot flashes were in my close future anyway, the other SE's I handle with advil. Everytime I look at one of my kids or my precious grandbabies I know without a doubt I would do it all again, no hesitation. I have my mammos and will continue too. My cancer was caught early and I had a fairly easy time with trt. We each have to do what is best and right for us whatever that is. Prayers and God Bless
(((hugs))) Janice

ladyg said:

Victoria
As the others have said you have to do what is right for you. I am a 2 year survivor and I get a mammo every year. This last one gave me a scare but when it was done in a closer view all was good. I am on Femara and have no side effects from it. Any aches I just blame on "old age", I am 65.
A mammo saved my life once so how could I not keep getting them?
Keep well.

Hugs,
Georgia

No problems
We post here for support and help and understanding of our disease, fears, and side effects of treatments. The posts you see here are primarily from women and men who are experiencing these events. Not everyone has them. I have no (zero) side effects from aromotase inhibitors. Some have minimal side effects. Some have horrible side effects. But the majority of women don't have any.

I agree with you that I never want to go through this again and I hope I never will. As the memory becomes more distant, I often look back and am amazed that I actually did it (surgery, chemo, radiation, hormone therapy). Having a local recurrence which would show up on a mammogram is less frightening to me than a distant metastasis which would likely not become evident until I became symptomatic. As Georgia says, the mammogram could save my life again and treatments for a local recurrence or new local disease might stop cancer cells from metastasizing to other organs - just like I hope this past treatment protocol has done. The thing is, as long as the cancer is in the breast only, it can be removed and usually successfully treated. And that's why I will continue to have mammograms and breast exams.

I will support your decision to move on and not look back, but I hope you will have a frank discussion with your oncologist before you do this. I doubt you'll find anyone here who has made the same decision as you, but I'm quite sure there are many who have considered it. I'm 64, but I really feel more like 46. And I felt good again 2 months after completing chemotherapy. I sailed through radiation, and had no side effects from arimidex. And I'm 64!

Suzanne

madsters1 said:

Thank you all for your
Thank you all for your concern, advice and well wishes. The "big deal" here that I think I'm not communicating is that FINDING a local recurrence IS the problem. Treatment would look something like this: If it's in the other breast, I'd go through ALL that I JUST went through(lumpectomy, chemo w/port, rads & meds). If it were found in the same breast, a mastectomy which I would NOT do, AND all of the previous treatment. To me that's not life.

It is true that going through it all over again is not life...
But the issue is that it IS death to not go through it. When I was first diagnosed and went through the barrage of tests and 5 biopsies...I finally decided in great anxiety that death was what I wanted and not life. I get it.

However, when sympathetic, concerned people began to wrap their arms of love around me something changed. I wonder if that is really what you need. A reason to live?

HI Victoria
Your post gave me a pause. I kind of feel what your saying. I'm scared to have another mammo - I'm scheduled this Wednes. for my first since prep for surgery last June. It keeps flashing thru my mind that I should running for the hills. Like they'll have to catch me first. But, yes, I'll go back and I'm pretty sure there won't be anything to worry about - blah, blah blah... But there is, isn't there? I always had this feeling that by having my yearly mammo I was doing everything I was told to and thus wouldn't have cancer. Yeah, right! But honestly, I was naive. I am a textbook picture of why we have annual mammos - no palpable lump - totally found on the mammo. Without it I'd be on the road to dying - my cancer was TN. I'd be looking forward to not seeing my grandchildren let alone to see them grow up. I hated the treatment - surgery, chemo and rads weren't a picnic to say the least. The black hole of despair was deep but I made it, dammit! If I could face that, I can face just about anything! Normal? It's just new. Cancer is part of who I am now, like back surgery a few years ago, is. It's a new unwanted layer but it's me now. I'm learning to live with it. I'm a work in progress. I wish the very best for you and peace too! You're not alone on this trip we didn't pack for. It sucks - all of it! Please keep on sharing with all these great co-travelers. We know!

Hugs to you!
Karen

Lighthouse_7 said:

Hi Victoria,
I'm glad that
Hi Victoria,
I'm glad that you're getting some very understanding posts. I completely understand the feeling of just wanting to be left alone. I am 3 years out now from Stage 3 breast cancer and had lumpectomy, chemo and rads. I had terrible side effects from all of the A! drugs and opted to stop them. I will have to say though that I do still get my yearly mammo, but that's all. I also visit my oncologist, although sometimes I question that because all it is is a visit for him to (excuse the candor) "feel me up" and say all seems okay.

Whatever you do is your decision and I know I would still like you to come to these boards and chat. Linda is so right when she says to take time because this experience can wreck havoc with our minds.

All my best to you in whatever you decide. I am 58 years old.
Hugs,
Wanda

I get it
Hi Victoria,

I completely get where you are coming from. I was diagnosed last July at age 44 with IDC stage 2, grade 1 with micro and macro mets to 2 nodes on the left side. I opted for a double mastectomy and had chemo and radiation. I did not breeze thru chemo and rads as some do and have been dealing with trying to shed the 25 pounds I gained during chemo and dealing with slight lymphedema in my left arm. I too have about 2 inches of hair now and have actually received many compliments on my short chocolate brown hair (never received any before when it was long and blonde). I am having my final reconstruction surgery on June 18 and just want to be done with this all. I feel like whenever I am able to finally relax and not think about the cancer, something comes up. I just found a lump under my arm on the side that didn't have cancer and I had an ultrasound done because I thought it was an enlarge node. Nothing showed up abnormal on the ultrasound. I still have the sinking feeling that it is something and am not sure if I am just being overly paranoid. I guess the only way I would feel safe is if they stuck a needle in right where I am feeling the lump and did a biopsy.

I have been taking tamoxifen for 3 months and the only side effect I am aware of is hot flashes. I have just learned to deal with them. As far as hair thinning, my hair actually came in thicker than before chemo so I'm hoping it doesn't start to thin. I guess I may be a little more emotional since being on tamoxifen, but I'm not sure I can attribute that to the meds or just the aftermath of all the treatments and an attempt to return to my life before cancer.

Good luck on your journey to your new normal. I don't think anyone can truly understand how we look at life after cancer unless they have gone thru it.

madsters1 said:

Thank you all for your
Thank you all for your concern, advice and well wishes. The "big deal" here that I think I'm not communicating is that FINDING a local recurrence IS the problem. Treatment would look something like this: If it's in the other breast, I'd go through ALL that I JUST went through(lumpectomy, chemo w/port, rads & meds). If it were found in the same breast, a mastectomy which I would NOT do, AND all of the previous treatment. To me that's not life.

As someone who has had both
As someone who has had both a local recurrence and mets I feel compelled to point out that treatment plans for recurrence and/or mets is NOT the same as the original treatment plan.

Just as we are each individuals and have individual treatments, the same is true of mets and/or recurrence.

In the case of mets, the philosophy behind treatment is different. When I was originally dx'd the plan was all about getting rid of the cancer so that it would never come back. With mets, the plan is all about containing the cancer and making sure I have quality of life (whatever that is) at the same time. It's about maintaining a balance between the two.

Another difference...my first treatments included 44 rounds of rads. No rads at all so far...my chemo meds are vastly different (I was on an oral chemo for a while)...se's are also dramatically different...first time no port, second time yes port...

In my head, I really do see two separate distinct issues. The original dx and treatment was so very different from the recurrence/mets...even though the pathology is the same, it's like they are different diseases.

Yes, the local recurrence did mean another surgery for me. But to assume it would automatically means a mastectomy might be jumping the gun a bit.

I also feel compelled to say again that none of us can predict the future, and none of us know what choices we will make down the road.

Hugs,

Linda

Barb A said:

Been There.
Hi Victoria. I was 37 when I was first diagnosed. I had a mastectomy with tramflam reconstruction. No chemo or rads, but I took Tamoxifen for five years. I had a hysterectomy at age 39. I had a recurrence at age 44. It was a tumor in the reconstructed breast. I had a lumpectomy, chemo, rads and am now starting my fifth year of Arimidex.

I've been through a lot, but not as much as others. Yes, it sucks, but I've become one hell of a stronger person for it all. I'm now 49 and have people tell me I sure don't look it. Whether its true or not, I don't care - well, ok, it is nice to hear. I'm enjoying life. I get mammos every year, even on the reconstructed breast. The last time in October I had another scare, but it turned out ok. The roller coaster ride is tiring at times, but catching cancer early has been what's allowed me to get treatment and go on living.

Everyone has to do what is right for them and I respect that. As others have mentioned, in 6 months down the road, you may feel different about it. I hope you have someone you can talk to and that is there for you. Everyone here sure is. This is a great place to be. Any side affects have ways around them, even if it's just how one thinks about it.

Keep posting here whenever needed.

Barb A

I agree with barb and everyone enjoying life
Hi Victoria,
Very interesting way of coping with PTSD no mammography forever! I hope as time goes by you will be healed and Reconsider your decision. Time is the best medicine and will put everything into perspective for you. Of course cancer detection and treatment is a personal choice and should be respected.
Four years ago I was "46, very young-looking female". I guess I am looking ok for my age now. Being diagnosed with stage III I undergone all available treatments, including all available anti- estrogen therapies.
While physically I am not the same, both my soul and spirit determine me, not my age and my birth certificate.
Good luck to you on your journey
New Flower