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aly07

Hi, I just registered with this site - YEAH! I am a breast cancer survivor since feb.12, 07. I was dx with IDC, triple neg. - stage II (tumor 3.8cm - one positive lymph node). I just finished over 4 months of dose dense chemo - Adriamycin, Cytoxin, and Taxol. I have been struggling with ending treatment and no "safety nets". My onc. (who I'm not sure she and I are compatible, but not sure about changing either) also does not believe in scans - had to DEMAND my CT and PET scans during tx (thankfully the PET scan was negative). On my last visit with her she said she would not order additional scans unless warranted (labs abnormal, I don't "feel well", etc.) She said scans are not recommended and give "false positives". I explained I prefer preventative and wanted them, but no go, so do I keep insisting, find another onc.???? very overwhelmed and confused right now. Also, she said some woman who are dx young (i am 41)who are triple neg and have one positive lymph node do radiation therapy even after mastectomy's. I have an appointment with a radiation oncologist next week and am looking for any information on radiation treatment especially if you've had a mastectomy rather than lumpectomy. Any thoughts, comments, suggestions? I am very excited about this site (wish I knew about it earlier) and connecting with other breast cancer survivors, friends/relatives of breast cancer patients, and learning more and more! Thanks so much!

myrenewal

Hi - I'm glad you found this site - lots of information here!

Many women have posted on here that their doctors do not order routine scans. My doctor has ordered scans but he may scale back on those now (I'm six months out from final radiation treatment). He also felt that breast MRI's show lots of false positives and that I would be getting biopsy after biopsy, but he was agreeable to ordering it if I wanted it. I have decided to have one in November - I can handle the false positives and don't want to risk missing something.

Also being a triple negative I had end of treatment issues - I found speaking to a psycologist who specialized in oncology to be very helpful.

It sounds like you are doing well overall - check with us any time!

Bimmer

We love Diane's Onc, we think that she is lucky to have such a dedicated and knowledgeable doctor especially considering that we live in a small town in rural Washington State.
Her last Petscan was last year. Then she had mets eveywhere and her disease was rapidly advancing. Her outlook was bleak.
Then she started on carboplatin and after 12 weekly doses she now has no detectable disease. He also did not feel that another petscan or ctscan was necessary now. It probably would not tell him anything he did'nt already know and either way it would not change her treatment protocol. And, there is no prior approval needed from our insurance company either. He can order a petscan whenever he feels it is appropriate..
It takes a tumor the size of a pea to show up on a petscan.
The problem is, for a tumor to be pea size, it will contain a billion cancer cells. If it's of detectable size, it's more than a billion cells...
If you don't like your doctor, find another one that you trust. You can question what ever they tell you, but they do know what they are doing....

LaurieL

Aloy7,
I'm Triple Negative with 1 node positive (sentinnel) and both medical oncologist and radiation said do the radiation. They didn't want to take any chances. I did 2 round of neo adjusvant AC which the tumor got even bigger with, had a mastectomy, tried a Taxotre (my body didn't tolerate) then did Gemzar and Cisplatin followed by radiation. I have only been followed up with blood tests. For me, I'd rather have fun with life every day and if/when I do show signs of reocurrance, then we'll start with scans, etc. For now, I want to enjoy my life being treatment free!
~Laurie

aly07

Hi, thanks Sue, Bimmer, and Laurie for responding. You all made some really excellent points and gave me much to think about. I understand there are pros and cons to doing scans, and I'm really trying to be positive ( I believe that is very important in recovery). I just want to be proactive and as Sue put it, don't want to risk "missing something". It's all so new to me and I guess I'm pretty entrenched in it right now. Other survivors I've talked to said in time the overwhelming feelings fade and it doesn't "control" your life. It's a lot of new feelings for me and i'm dealing with them. I appreciate everyone's input, it helps to know other points of views. Bimmer - I agree with what you said about docs knowing there "stuff". I believe my doc is competent, it's just a personality difference....... Laurie - thank you for sharing, I appreciate your input. How long have you been cancer free? You make a great point about enjoying life and being thankful for another day and being treatment free. Thanks again everyone.

Indigoblue

aly07,
You are so right about having faith in the doctor. I know it's important, because I have struggled with this nagging sense they're not always telling me what needs to be told.

I've been repairing the appliances in my house all year. The water is full of lime, sulphur, iron, and gook. The pipes, delicate instruments and electrical devices are complicated, and I have chosen to attempt fixing it all, as I'm not working anymore, our home is a money pit, and we're living on a teacher's salary. One visit from the Appliance Repair man charges $60 just to walk in the door. Parts are so expensive, and if one purchases the "wrong" washer, nut, bolt, wire, tube, etc., it suddenly turns into a plumbing, appliance, electrical nightmare. I speak of this, because if you call the "wrong" repairperson, they can charge you hundreds and thousands to destroy your home.

This holds true with physicians, surgeons, oncologists, radiolgists, hospitals, treatment options, etc., etc.
Dr. Oven, Dr. Refrigerator, Dr. Dryer, Dr. Washer, Dr. Faucet of Sewage System, Inc., and ofcourse the Insurance Gutter, Roof, and Unreal Estate disassociated with the fact that we are human beings and beautiful people.

It is funny how similar plumbing/electrical/car mechanics are to the professionals in the medical world. If you find a good one, hang on...but it's that little unknown fact; only their hairdresser knows for sure.

Good luck in finding a wonderful doc, look for a panel and definately research the hospital. I'm likely changing to the hospital which I originally rejected because of distance, weather, and a frantic, panic, "get this thing out of me now" state of mind.

My "team" of physicians, top of the line; but a little weak on research, communication, and particularly after care and guidance (emotionally, nutritionally, and explaining little regarding trip neg, side effects, and long term damaging effects)

I agree with Bimmer...he has it right. Also, insurance companies are unfortunately controlling the tests, treatments and physicians we chose.

Had to comment. Hope all is well.

((hugs))

Indi

LaurieL

Hi,
I've been a survivor 1 year 6-6-07 (DX). Out of treatment since 1/3/07. Don't get me wrong, I have my emotional days, and constantly worry about aches and pains, but do I want to look back and see that I spent all my time worrying about recurrance or enjoy the time I have being treatment free!!! I'm enjoying being TREATMENT FREE.

Sadie-Rose

Hi Everyone,

I just joined this site last week.  I am a triple negative survivor.  I am three years out from treatment.  All of my follow up tests have come back good!  My oncologist was very pleased at my last visit and I enjoyed celcbrating with her.  The three year window is very important for triple negatives. 

In my treatment I had two surgeries.  We took the lymph nodes first and I had one positive node. Then I had nine rounds of chemo.  I did a second surgery to remove the tumor after it had gotten smaller and so less breast tissue had to be removed.  After that I had six and a half weeks of radiation.

I would love to talk to other survivors with triple negative tumors.

 Sadie

.

CalGal

Hi Everyone -

My motto is, "It's their job, but my life!"  We all know there are differences in quality, knowledge, personality, etc., for any expert.  Is the onc a bc expert?  Is the onc familiar with trip negs?

Aly - If at all possible, get a 2nd opinion and even a 3rd.  There is no one right answer re:  treatments or scans, particularly for trip negs. If you feel it's important that you and your onc have a good relationship, it is!

On my initial dx, despite my requests, they did not do any scans.   When I found a recurrence one year after finishing rad'tn (later it was evident that the radiologist missed the recurr tumor on my mamms 2 mos earlier), again I had to ask for a CT scan ... and finally got it and more than I ever feared - bc liver mets.

I really feel that it's better to find mets earlier than later.   Although I had to fight my now former HMO to get RFA (radio frequency ablation), earlier was crucial as they only do RFA if the mets are limited and of a relatively small size.  My liver mets have been gone 15 months!  

Unfortunately, in July, my quarterly PET/CT scan showed a lung met.  As I'm positive for BRCA1, I'm doing the PARP inhibitor clinical trial.  Another month to go before a scan to determine its effectiveness.

CalGal 

Indigoblue

Calgal,

How is the therapy going, PARP?  I've been visiting no surrender and it's fantastic! Wish you'd join in, your input is so valuable.

Problem I have with the Pet Scans is that by the time the evidence of cancer is present, it usually means mets.

I think that is why the onc left it up to me...do I want to know if there is no treatment available?  I'm having a lot of bone pain and none of the doctors seem to be concerned; haven't had any PET, CAT, Bone Scan or MRI since the end of Rads at the end of October, 06.  Meanwhile, the pain keeps getting worse. 

Not certain what to do or how to approach it, as they seem to be treating me for "breast" cancer, and have not been acting responsible should another type of cancer occur.  Should I be seeing someone else?  My family doc says it's the oncologist's responsibility; he seems to think it's hers....

So confused...and the chemobrain doesn't help. 

Indi

CalGal

Hi Indi -

Thank you for the kind words and asking about me.  As for the PARP inhibitor trial, so far, so good!   Tomorrow is week #4 and I'll have 6 hrs of bloodwork (pre-pills and then at hourly intervals).  CT scan on week #8.

Thanks for the reminder re:  No Surrender.  I'll go back there.

My impression is that PET scans are to find mets.  On my initial mets dx, I had a CT first.  The PET was to confirm mets.  (I had to push for a liver biopsy which had been offered and then reneged upon).

I'm sorry you're having lots of bone pain.  I would think you should get a bone scan ...   Back in 2006 and 2005, when I was with an HMO (rather than a PPO like now), I really had to push to get what I thought I needed.  That included outside opinions, because I wanted a more thorough opinion and I could tell that there is usually no one right answer.

In my NON-medical opinion, I think your onc should be the one coordinating your care.   With the exception of my 12/05 recurr & mets dx, when my surgeon ordered the scans, it's always been my onc who has ordered the scans (CT, PET, bone, MRI).   I look at it as a team effort ... and have discussed reports, studies, etc. and asked for additional scans (such as between dose dense AC and before starting a new chemo regimen).   Back on my initial dx (lump's, SNB and then rad'tn), I did NOT have any scans.  Radiology never ordered any for me either.

While there's a certain bliss to not know (if one has mets), in my opinion, certain mets can be treated (not cured) and the sooner the better!   A friend of mine who I met post-RFA, also wanted RFA of her bc liver mets.  She was denied due to having too many mets and they were too large.   To me, that goes back to "they could have been treated earlier".  To be blunt, I figure that bc in the breast will not kill me ... it's the organs I have to be concerned about.

I understand your confusion and frustration.  I shared it when I was with my HMO.  But, knowledge can be power ... and if you can get a 2nd opinion at a major cancer center, I think that might help you make some decisions.

Take Care,

CalGal 

Indigoblue

Hi Calgal,

You are so knowledgeable.  I read today that triple negative cancers are more likely to develop distant mets than other cancers, and it's also  rarely has a local recurrance, unless it's a different breast cancer altogether.  Cancer consultant dot com.  Sorry, this site has been strange lately, and I've been having a difficult time trying to figure it out.  

Thank goodness you are doing well! Love you, and hope it keeps getting better.  I don't know about other women's outlooks, but the thought of mets is a constant "thorn in my side".  It's so unpredictable, and I wonder if the doctors care, anyway. 

The mind over matter is all we have, so I think the positive outlook is truly our best hope (most of the time).

Take care of yourself, be well.

Indi

Myrenewel,

Where does one locate an "oncologist psychologist"?  I saw one at the beginning of treatment who convinced me to get chemotherapy, but she was a nasty human being and I never returned.  Are there any "professional psychologists or doctors" who are truly compassionate and without greedy-needy money making on their minds?

Indi

sahalie

It's worth a discussion with your doctor.  Good luck.

Indigoblue

Thank you CherylnC! I don't think I've ever had any calcium levels checked.  One doctor told me the calcifications in my breast are actually calcium released from the bone...another told me that was a lot of bunk. 

The "parahyperthyroidism" would make a lot of sense ; I will get some more info about it and absolutely ask for a blood test, or whatever is necessary.  I am at present experiencing back, hip, foot, neck and a very itchy, welty rash from my hands to the elbows on both arms.  Shoulders and teeth (of all things) have also been sore, and I' ve no way to explain any of it, since I quit walking and rarely leave the house, anymore.'

Thanks so much to everyone for being so kind and supportive.  I rely on this site, and a couple of others for knowledge, sanity, comradery and friendships.  Kind of stuck in the middle of nowhere, and sometimes feel like Ava Gardner in the old "Green Acres" program in the 60's...

Love you all!  Thanks for being here.

Indi

nosurrender

Hi to the new girls,

HEY to my tripleneg sisters!

Just want to add that there ARE good outcomes with triple negs too-

I am a six year survivor of triple neg.

I am in treatment again for a new cancer that is ER+ and lobular, but my docs all say the triple neg was beaten.

There is a TON of new research being done right now for us. I pray that everyone of you benefits from it.

Julie, you will always be my hero!!

Indi- I just love you girl.

Cheryl, glad you are feeling better!

Love,

g 

sahalie

 I'm hoping what you are experiencing will be easily dx with your lab work.