CALLING ALL STAGE I SISTERS

mmm5

LOL Sue

Hate Pink too.

You bring up an interesting question, how many of you get scans or tumor markers at each visit, I have always gotten TM's but refused them at last visit because they are too stress producing.

Makratz

Hi SUe 61.  I m a Bosaton (suburb) girl too.  Deb is too.  I was treated at Beth Isreal who works with Dana Farber too.  It's great that we have such awesome hospitals close by.  BTW, NO SOY!!!!!!!!  I agree! 

I do not get scans or tumor markers.  Does everyone else?

don23

My oncologist does not believe in tumor markers. It's all about any symptoms that I may have. I wonder if that's good that he doesn't do tumor markers and bad that he doesn't.

DebbieSawyer

OMG Sue, I hate pink too! If one more person asks me will I be wearing pink more often now, I'm gonna slap 'em silly. 

mmm5: Scans and tumor markers at each visit? I got one bone density scan, and a tumor marker was place during the core needle biopsy, but that was it. You're getting scanned or tumor markers at each visit? What's a TM? I looked it up in the abbreviation post, but didn't see what it stands for.

Sue-61

mmm5, I thought it was an interesting thought but almost hesitated to state it. I really cannot take any negativity. Not after this cancer crap. I want to speak to my breast surgeon when I see him in 2 wks as I like him more than the ONC, altho the onc is written up in local Boston magazine as being one of the best. I need reassurance when I see him and the only thing he says is........gee, you look good........HEY! I am 62 .......and look like a freaking pear. Am heavy into LLBean elastic waist jeans......

On the lighter side, I told my PCP that I always hated my breasts (36DDD, I am 5 ft 8 but gimme a break) and am not too fond of my liver, either. Scared him to death. Asked me if I had a drinking problem........

And my husband had the NERVE to die 3 yrs ago and the dog (one big dummy from the local shelter) also had the NERVE to get diagnosed with nasal cancer when I got dx w this. And she died last March. And I bought her lots of scarves and none of them were PINK! get my drift....... ?

Fondly, Sue 

Makratz

Sheila, Debbiesawyer said SLAP!!  I like her!!

I think TM is tumor marker.

DebbieSawyer

TM. Tumor marker. Duh. No brainer. I haven't had my glass of medicinal red wine tonight, so am not thinking clearly yet.

sheila888

Debbie... TM is a blood test that checks for cancer cells. It is anxiety producing  I just had one with good results. Thats the only test I get every 4 months. And Bone Density every 2 years since I'M on Femara.

Maybe someone else can explain TM in a better way.

DebbieSawyer

Ok, I spoke too soon about TM. This is an interesting conversation: it sounds like several of you are getting alot more procedures than I am, yet we're close in stage and grade.

aabinion

Hi DebbieSawyer. I completely understand!! My Doc told me there was no need to do mastectomies and so I went with lumpectomy. I was always worrying so I decided enough is enough and two years later am going to have bilateral mastectomies (Nov 16th)

DebbieSawyer

...and Sheila, great news on the good results from your TM!

sheila888

Debbie Sawyer once in a while we like to slap people in our lives.

Hey Linda you are very observing. Thanks for pointing out to me.  hahahaha

Makratz

Aabinon, how interesting.  Did you decide to have a bilat mx because of a recurrence?  Or are you just sick and tired of worrying?  I had a lump and worry all the time!  I'm a worrier!

Sue-61

makraz. we BOHSTON gals.....haha. Saw your post after I posted .....Boston is the best. I live in Worcester right near UMass Medical Center. I am a registered nurse, just retired last yr on my husband's social security.......was a casemanager at a   BIG HMO and opted to pay more out of pocket and get treated at the best place.Unfortunately, I was a cardiac casemanager.....know nothing about breast cancer, really. So the first thing I did......I requested a breast cancer casemanager!

I do have some fears that they "ARE Dana Farber "and kind of poo poo my questions. But who could doubt any of the thoughts and ideas that come from the finest docs in the northeast?  And I admit to being a nutball worrywart.........Sue 

sheila888

Debbie We are close in heart and we sharing the same journey.

DebbieSawyer

aabinion, your doctor said okay to mx two years after your lumpectomy?

Makratz

Sue, I live between Boston and Worcester.  Hope you are doing well.

Is Spags still open???

Titan

What a great thread!  My name is Joyce and I just finished chemo and rads..just had 6 month follow up this week with BS and 3 week follow up with rad onc....everything is fine...except..had a mammo on Mon...and they sent me a letter saying that they found a area with is probably benign but to come back in six months DUH!  Haven't they read my freaking chart????  Anyway, the bs also read the mammo...plus gave me a great exam..no bumps, no lumps, nothing....

aabinion

Hi Makraz. Yes, I am a big worrier!!!  I was the 4th one in my family to have breast cancer and I my Aunt had a recurrence so, I was  hoping I could maybe maybe be done with the cancer thing if I just got rid of them. I am going to have reconstruction so at least I am going to get cleavage out of the deal as a bonus

Makratz

I can understand what you are doing.  I m the onluy one im my family who has BC and I have 26 female cousins!  BRCA- too.  Doesn't make sense.  Good luck with you mx.  I hope everything goes well and that you love your new girls.  I've heard great things about them!

Sue-61

OMG, Makraz

Spag went to that "door ten" in the sky years ago. If you don't get it, you ain't REAL.....it is now bldg 19 and it smells funny. Real funny. Sue

aabinion

DebbieSawyer- I was afraid my surgeon would give me grief over it but he said he would do whatever I wanted him to do. I think mainly he was ok with it because of my family history. He was sad that I was gonna mess up his good lumpectomy that he did. He really did do a great job so, I am hoping he does just as well the second time around!

aabinion

Thanks Makraz! I was BRCA neg as well.

Makratz

My brother went to WPI years ago and I used to love to vist Spags while I visited him. It makes sense it's a B19 now!   And yes, they smell, but are fun!

Sue-61

TO ALL

I am loving this thread........it so far seems so REAL and HONEST! 

Being the sceptic, I want it to stay this way. No fighting, play nice in the sandbox and let's all share our toys. Groan, I am such a grandmother!

Love, Sue 

Anonymous

Hi Ladies,

Just chiming in - Stage 1(IDC), <1cm, only did rads, er/pr+, her2-, no nodes involved. I've changed my eating, I take supplements.

I HATE pink too

Makratz

Sounds good to me!  I like to share my toys!

hmm

Debbie,

To answer your question about the radiation onc.............. he gave me percentages on possible risk of side effects from the radiation. These were for the serious ones like heart damage which ended up not being an issue as it was my right breast that had rads. So one by one we went over any other possible things that could happen which of course I had asked Dr. Goggle and when I realized the percentages were very low I went with it. Plus I was not wanting more surgery at the time. However......................... many times I think ............hmmmm why did I not just do it!!!!! Meaning of course mast. with reconstruction!!!!

 With the radiaiton itself I did not have any problems ........my skin just got pinkish and then a bronze color but nothing bad. Used lotions 3 or 4 times a day and stayed hydrated as they said to. So it was okay...or as okay as these things can be.

Hope this was of some help.

Pat 

DebbieSawyer

Sue, you got yourself a deal!

Hi Joyce--are you going to follow up sooner than six months? Seems like they'd want to double check, now, given your history.

DebbieSawyer

Pat; yes, very helpful. My rads will be on the left side, so I had wondered about damage to heart and lungs. Sounds like you had a good rad onc, to go through all your concerns.