BLAAA!

NYruralrider

Today I went to the cancer center to get my prep started for radiation. Everyone else in there for treatment was elderly!!! The nurse was telling me how the statistics are not very good for TN patients....then she told me not to listen to statistics.....the more I meet nurses, onc's etc. I think they are just appeasing...

 HOW BAD IS THIS??

 My nodes were clean...5.7 cm w/ 2 mirco invasions, stage 0, grade 3, camedo type.....one onc said I can do chemo if I would like to feel I am doing something  the 2nd opinion said no chemo period. Both said chemo could have bad effects down the road.....what should I do?? This whole thing is driving me crazy...I cannot stop thinking about this!!! I want a new body!!!!

 My BC Navagator told me I, (my case), was complicated....what are they really saying to me????

I soooo very much do not want this...I do not want to go to the cancer center or hospital...I was a bit annoyed having to go today...not that I do not want treatment but I do not want to have been diagnosed w/ this MONSTER... I want to be ME again!!  I feel fine I am strong, active & healthy!!!

 I asked the nurse if my insurance company OK'd the genetic testing yet and she said no it can take  few weeks to get approval. HELLO~ I am being prepped to start radiation next week!! If I have these bad genes I was advised to get a double masectomy and remove my ovaries...HELLO~ why put me through radiation and it's expense if a test will tell me to remove my female parts or not...this delay makes no sense...our insurance is not that good and I do not want to pay mega $$$ in radiation bills if I will not keep the breast anyway, (forget ever being able to pay for all this...we will just have leans on the house and ruined credit!)....I am annoyed!

 The best way I can put this is it must feel like this to be diagnosed with AIDS!! What is the difference ...really??

 Can anyone comment?? I feel alone, scared & doomed!! How are we supposed to deal w/ this??

Just called the funeral home and they are sending me pre planning information.

 NYruralrider

J9W

NY,  I agree totally with your sentiments about radiation and chemo. I chose mastectomy so wasn't told to do either radiation nor chemo. It too was DCIS, grade 3. I took tamoxofin for 11 months but had to stop it because it was killing my joints.....I couldn't even walk up a flight of steps!  I do understand that having radiation/chemo could affect medical plans later on so do some research on the forums here about those two choices.  And, don't call the funeral home, you'll do fine. DCIS gives you some time to figure things out so don't let docs rush you. The worst part now is the waiting you have to do.

NYruralrider

J9W Hi!!

 You are TN and they gave you tamoxofin?? My area was large 5.7 cm's. I also had 2 micro invasions.....they still conider it stage 0 and DCIS (with 2 mirco invasions)....I am axious to see what Roswell Park Cancer Center say's to me tomorrow. I begin to feel somewhat OK mentally...then I have to go to a Dr. and I get horrified again by what they say to me

I had 2 surgeries last month, 1 partial mastectomy & another to clean up a margin....so it is all gone now...but for follow I am confused...and not offered much...radiation yes, but 1 Dr. aid I could do chemo and the other said no chemo......and the stahl on getting the genetic thesting...I do not know why approval takes so long!-

NYruralrider

J9W

Hi NY,....oops, No I wasn't TN and that does make a big difference.   But I do feel for you and all the darn doctor appointments. They seem to never end. I was just telling my DH yesterday that physically I feel fine, but mentally I'm getting beat up.  Doctors, doctors, doctors and all this for a girl who feels physically well. As a matter of fact, in 15 minutes I leave work for yet one more visit but if this goes well, I don't see a doc again until December!!!  My onc suggested the genetic testing on me, but I just couldn't bring myself to do it. He and my gyn said my ovaries and tubes had to go - so they left me a month ago. 

Kymn

Hi NY first of welcome, very sorry to have you aboard but you wwil get lots of information and understading here, we all get it. Next big breath  although being TN does through a bit of a scare intoo us really at the early stages our cancer is just as beatable as if we were ER+. Being a stage 0 is very encouraging news and that is great that it was caught so soon. I am only stage 1 had 1.8cm tumour along with over 5 cm of DCIS to go along with it. I also had two surgeries for the same reason as you. When I met with my onc he gave me the option of chemo but with a lecture that if it were my sister I would suggest doing it but you being stage 0 really puts you in a great position for just radiation. Has the Onc given you your stats yet? Mine were 84 % chance of no reacurrance with just radiatiion which is pretty darn good but went up to 92 with me taking chemo. You have to weigh that in when deciding what you will ultimatly decide to do. Good luck with you decision come and vent anytime

Hugs Kymn

poptart

Just popping in here because I don't check too often anymore.  I understand the worry about being triple negative because, in general, it does have a worse prognosis than other types of bc.  However, I think there is some exaggeration about the risks of tnbc relative to other types of breast cancer.  If you are really stage 0, then your chances of having a recurrence and dying of breast cancer in the next 10 years are very slim, especially since you are getting treatment.  In fact, with stage 0 bc, there is a greater chance of dying of other causes.  I am not trying to dismiss the fears people have, just trying to add some perspective.  Have you looked up any studies on recurrence rates of tnbc with a microinvasion?  I would definitely do the radiation, mastectomy or not, but don't know about the chemotherapy.  Good luck!

SarahMeadow

Re: How bad is this? Triple negative breast cancer is more likely to recur during the first three years after diagosis than hormone sensitive breast cancer - after the first three years, your chances of recurrence are actually lower. So, that can be looked upon as good news if you can get through those first years. In a way, you are fortunate, because DCIS is very early stage, so you have a chance to nip this in the bud. Radiation is the standard of care after lumpectomy for DCIS and you want to avoid long delays. Chemotherapy appears to be worthwhile for many cases of invasive triple negative disease, even small tumors, but the situation is not clear for DCIS. Apart from the side effects, if you have chemotherapy now, it might not be as effective if you do develop invasive breast cancer later.

One factor is your family history of breast cancer (I'm assuming you have one since you are being considered for BRCA testing). Getting DCIS means that your breast is somewhat fertile ground for breast cancer. If you have a strong family history, you do not need the BRCA test to tell you that you have familial breast cancer and you have some of the information you need to make the radiation versus mastectomy decision. Often, women with mothers with breast cancer will themselves develop breast cancer at a somewhat younger age than their mothers did. Also, if their mothers died of breast cancer, they are more likely to die too, even if their tumor characteristics are not aggressive (the reverse is also true). My mother died in her 50s of breast cancer three years after being diagnosed initially with a small, estrogen positive tumor and having a lumpectomy. I was diagnosed in my forties with a small, estrogen positive tumor, had a lumpectomy (to be followed by radiation), and after a rather unpleasant nine months found myself with a bilateral mastectomy, complete hysterectomy and chemotherapy (but still in remission after six years). I tested negative for BRCA. What does that mean to me at this point? Only that my sons are far less likely to develop breast cancer than if I had tested positive.

Below are some study and article titles that you can Google if interested:

 Family history of breast cancer in first-degree relatives and triple-negative breast cancer risk

Breast and Ovarian Cancer in Relatives of Cancer Patients, with and without BRCA Mutations

Triple negative breast cancer in BRCA1 mutation carriers and noncarriers has similar prognosis

The prognostic impact of age in patients with triple-negative breast cancerBiomarker Expression and Risk of Subsequent Tumors After Initial Ductal Carcinoma In Situ Diagnosis

Diagnosis of second breast cancer events after initial diagnosis of early stage breast cancer

Hope this helps a bit,

 Sarah 

NYruralrider

Thank you everyone. My onc's said there were no statistic's to give me, in my situation anyway....

Tomorrow I drive to the Roswell Park Cancer Center. Thank you SarahMeadow I will look those up. I have also been told I am a gray area whatever that means. The one onc said even w/ my 2 micro invasions I was still "considered" stage 0...I am new to all this cancer jargan...seems nothing is cut & dry....will report on what Roswell Park says tomorrow...and it is very odd to see so many Dr.' and procedures when I feel GREAT!!

Interesting about the genetic testing. My mother had BC in her 70's...she had both breast's removed at seperate times and had radiation w/ the tomoxofen...my one onc said mine is unrelated as I am TN. My mother died cancer free.

What can I do for myself to help prevent anything else? Is it true I cannot have an occassional glass of wine anymore? I am overweight but have been lowering the fat intake in my diet. I am very active.

Thank you all again for responding!

Nyruralrider

Kymn

I still enjoy wine, not going to stop living feel like that would let the cancer win. I am careful about most things you know moderation and all that jazz but not going to deny myself

NYruralrider

I went to Roswell Cancer Center in Buffalo Wed.

I feel better about just doing the radiation. I was told I have a 1% chance any cells escaped my breast from the tiny micro-invasions..(clean nodes)....I was told 5% or higher then I would be advised to do the chemo.

The onc was not phased about the TN. I asked what stage I was and she said 1...then added more like 1/2 if there was such a thing.

Did agree I should do the genetic testing but said that too is a low % to be +.

 Start radiation Tues....went swimming in a lake yesterday and today a tiny area on my incision had a little pus. I squeezed it and then it was like bloodly clear after the initial pus. I put Triple Antibiotic  sauve on it w/ a band aid. My reincision was over a month ago.  I wonder if the radiation would kill any slight infection?

My surgeon is out for a while as he had surgery and is 100 miles away....not very doable to go back there esp. starting the rad in the afternoons!! Tomorrow is a holiday so I cannot even call until Tues.

NYruralrider

yellowdoglady

I was told that radiation would sanitize the entire incision site (presumably from cancer), but definitely bring the issue of infection up so that can be cared for as well.  Those doctors are your survival team.  Let them work for you.

yellowdoglady

And don't forget your radiologist is a doctor too.  He or she can help with anything and everything.

NYruralrider

Started radiation 3 days ago. The onc looked at my little infected site and said it was not a problem...he said I was doing the right thing w/ the betadine and antibiotic suave.

Thanks.

yellowdoglady

Hate to say this straight out, but sometimes the oncologist moves folks through to the oncological radiologist, who takes over.  My radiologist has taken up the laboring oar in followup, and has been really good at that.  Anything I ask for I get.  They schedule the tests so I don't have to wait.  If I had had anything oozing anywhere, they would have been right on it.  I had to miss a day because I was burning a bit.  I was willing to press on through, but the doc said not to worry, we would just invert the schedule a bit so we did the electron thing for a couple of days before shifting back.  No need to postpone treatment.

    

jazz3000

Remember as you go through all of this your immune system is lower than the norm. Don't stop living by any means but be careful with the activities you chose for yourself. You will be more suseptible to bacterias, etc., so avoid activities that could cause more harm than good for the moment and chose those activities that lower your stress but favor your immune system.

Hugz@NY.  Did you get your Teddy Bear to hold onto yet?

yellowdoglady

Exactly right.

I could go to work every day without an issue, but I did all my grocery shopping at 7 p.m. when the kiddies were home eating dinner.  Avoiding unknown children was important.  Staying out of crowds was important.  For a short time, you must think that every sick person you meet WILL make you sick, and that is not acceptable if that delays your treatment.  

NYruralrider

Really, the immune system is lowered due to radiation?? Teddy bear??

 Having strong stabbing pains where I am being zapped. Riding my horse is now hurting that breast..I think I need to bind it!

 Also getting a keiloid on my scar

 I did not think radiation hurt? I have had 6 treatments and hate them already! I have another 5 weeks!!

 2 men give me my radiation...MEN I know they do not care and I am no Pamela Anderson...but still I feel funny and unmodest....

 Yesterday the onc told me had I waited another year for a mammo this would have "nailed me". I think he meant it would have killed me?

 The nurse told me they do not like to see their patients TN. The onc at Roswell Park Cancer Institute, (my 3rd opinion), did not think being TN was a big deal.

 Thanks all...just a bit bummed Of course I have been bummed since diagnosed in May...but I have been trying to not think about this and be unbummed...but now this pain from radiation is a constant reminder & I do not even have the promised skin burn yet!

NYruralrider