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Fighting4Popi2
Posts: 25
Joined: Dec 2011

Need Advice:

I had a mammogram on Sept 15th, than nothing for 2 ½ weeks and a call came from GYN. There is something there we want to look at closer. Cluster of calcifications.

Next, Magnified mammogram, 2 weeks wait and a call came from GYN. We are suggesting a stereotactic biopsy.

So, on Oct 26th I had the biopsy. Not fun but not too bad. Than wait, until yesterday when I get a letter in the mail saying I have an appointment on 11/6 with a surgeon.

What the hell is this?? They didn’t even call me? What should I do next?? It is Saturday and I tried to get the doctor on the phone but he is not on call today….

Thanks to all you wonderfull people..

Lynn

Lynn Smith
Posts: 1265
Joined: Mar 2011

I would be very very upset.Fortunately I was Stage 0 but doctors never know till they get in there and also after biopsies are done. When a tumor is found there should never be more than a week to get in for a biopsy.

My first bad mammo was a long wait like you.I was told by the breast center I had a place on my left breast.I need a needle byopsy.Well I called my doctors office several times.I knew he had the report. First I was told "it's on his desk, Next call by me I got "I will tell the doctor" and the last call I was told "come in and see him".It will be 2 weeks before we can get you in.I was livid.BUT thinking it must not be anything.Why would I be put off???? Finally Biopsy. It was malignant.Then Surgery finally was done. Then a second surgery for CHECK margins.Like you it was 6 weeks waiting for me.

Please keep us informed.We are thinking of you.Yes getting this in the mail on Saturday must be frustrating.When we get reports we don't want to wait even a day.I've had tumors for over 45 years.I never had to wait when I was younger.I was in the hospital in 2 days and the tumor was out.Of course mammos.needle biopsies etc now but delays should never happen.Not like you and I have had.

Lynn Smith

Fighting4Popi2
Posts: 25
Joined: Dec 2011

Thanks for the response. The letter I received said:

Thank you for making an appointment with dr XXX on 11/6 at 4pm. Please bring XXXX

Does this mean I have cancer???

Thanks
Lynn (Sister in cause and name!)

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

however, it means they want to do more follow-ups. I just went through 2 months of escalating visits, ending in a double lumpectomy before all was finally declared benign.

My calendar, which ended in a Benign diagnosis:

1. 9/11/12 - Routine mammo; went home and on with my life. Been getting mammos for years.
2. 9/13/12 - Call-back from med center stating I needed follow-up scans with a radiologist. Something had "changed" since the prior year.
3. 9/25/12 - Extra mammo where they determined I needed an ultrasound (done immediately). Then told I needed a needle-core biopsy.
4. 10/1/12 - ultra-sound guided needle-core biopsy and marker placement. Follow-up mammo done immediately after procedure found that there was another spot; that the biopsied mass was not the same one as originally seen on my mammo. One mass showed on mammo, a second on the ultra-sound. Told I needed MRI and/or full excisional surgery. My surgeon was out of town.
5. 10/5/12 - bilateral breast MRI to ensure that nothing else was missed. Just the 2 masses already spotted.
6. 10/11/12 - finally met with my surgeon, who wanted to do full excision with margins of both masses (essentially double lumpectomy.) While biopsied mass was benign, it was of a type that might have cancerous cells around it, so it had to come out. And the other mass wasn't biopsied yet.
7. 10/16/12 - outpatient surgery for excision of both lumps, which were unfortunately not located near each other. Single long incision, lots of internal work done.
8. 10/18/12 - call from dr - everything was benign.

And then this was followed by rare post-op complications/healing issues, such that after 8 weeks of procedures to finally confirm that I don't have breast cancer, I ended up back in the OR yesterday to have drains placed, as my breast was not healing properly. So now, I'm thrilled that I don't have breast cancer, but I'm still in the procedures mess. (Add in 5 additional visits with my surgeon between my surgeries - a 17 day period. I have at least 2 more visits, and lots of healing until this is all behind me.)

So the extended ordeal does not mean you have cancer. It just means that they still need more information. I hope that your journey is over more quickly than mine.

However, I do understand your frustration and fear. This unknown period is horrible.

Alice

peanutcat's picture
peanutcat
Posts: 104
Joined: Mar 2011

hi Lynn,
This is so upsetting to hear. It never should of been that way.First of all it shouldn't of beena 2 and a half week wait for the results of a Mammagram 3 days at the most. If they saw something they should of called you right away. This is a life we are talking about. I'm upset for you. Then they have a nerve to wait 2 weeks to schedule a biopsy. What is the worse thing is getting an appt in the mail for a surgeon. How RUDE and no bedside manor at all. My advice and begging PLEASE change surgeons.
My surgeon was wonderful after he felt where the lump is he told me right there I need a biopsy. Then he said it so caring after the surgery it doesn't look good so I knew right there. But relly 2 week wait. Like I said this is a life we are talking about.
Please let me know how you make out. I will keep checking right here.

Good Luck,
Hugs Cathy

heart-in-hand
Posts: 92
Joined: Sep 2012

First ask if they tried to call you. Maybe they did. (in a pig's eye) I know, I know it is really hard to change mid stream. I am still in the process. It costs more money too because the doctor(s) all re-do the same procedures and it is not a simple thing to do like making a phone call.

I had a great surgeon. Not a people person- but great follow through. Do you have confidence in yours? My medical oncologist, though, was unconcerned about me and left me hanging during the worst chemo side effects. And she was part of his "team". I am in the process of changing the entire team, and it is not easy. First, I don't think I will need the surgeon again, hopefully, and second I am starting a new center for radiation so I am going to sign up with their team. I live in Cleveland, so their idea of a "team" suits them...the Cleveland Browns stink.

When we get these kinds of results back our emotions are off-the-chart. So take a deep breath, my sister. Make a call after you calm down and try to not second guess. You will make it through this, one day and one moment at a time. You didn't expect this and its throwing you around. The least little thing now sets the blood pressure off. I really hope that you can get some answers quickly now!

Hoping for your peace,
Kay

desertgirl947's picture
desertgirl947
Posts: 408
Joined: Oct 2012

It's not easy, for sure, not knowing what to maybe expect. I have found that when I really had med problems, the med people called me. If I wasn't home, they would try to catch me at work. If that did not work, they would call home again and leave a message. They were VERY determined to get hold of me. When I have gotten a notice through the mail, it has been for the purpose of meeting face-to-face about the results of a test. The discussion usually ends with the idea that there appears to be no serious problem at this time, BUT they will keep an eye on it.

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

are putting you through all this wait time. You should have gotten a call within a few days after your mammogram. I had my mamo done on Friday and got a call on Tues. that I needed to come in again.
I went back on that Friday and had a second mammo and ultrasound. the following Tues. the biopsy was done and on Thurs. I got the call with the not so good results. I had surgery within 2 weeks. I will keep you in my thoughts.

Hugs,
Georgia

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

If I were you I would go to your gynecologist office and ask for a copy of the report of the mammogram and the Oct 26th biopsy. You paid for the test and the results belong the you.

This way when you visit the surgeon you will have some information prior to walking into his office. You will have had some time (not a lot) to formulate the questions in advance.

Good luck to you.

Best,

Doris

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

You might also be able to get copies via email...be assertive about your appointment. Call on monday and see if there is an earlier appointment you can get. Or can you have a phone appt with the doc, just to get basic information? The sooner you have information, the sooner you know what to do. And yes, consider a second opinion...you have not been treated well so far.

I hope you get answers soon.

Hugs,

Linda

sbmly53
Posts: 1466
Joined: Jan 2010

Your GYN should have called you with the biopsy results and told you about the referral to a surgeon. However, the calcifications may just need to be monitored, and having a surgeons opinion is good.

I'm thinking of you, And wishing you the best.

Sue

Fighting4Popi2
Posts: 25
Joined: Dec 2011

I scared. Any advice??

Rague
Posts: 3277
Joined: Aug 2009

Do you mean DCIS (Ductal Carcinoma In Situ)? Not my type but there are several here that are DCIS with a lot of info.

Winyan - The Power Within

Susan

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Don't be scared sweet sister! You will be OK. I have IDC, yours is in situ which means the cells haven't spread outside the tissue (tumor)- cells are contained. Mine did and I took chemo and radiation, but I am doing OK now (being on tamoxifen for a year).

You will need surgery. And you might only need to take a pill, depending on the type of tumor. They might suggest radiation, although I know some women who didn't even need it with your type. See what your doctors are suggesting. Look and examine your options. There are other ladies here who will be able to guide you and help you answer any questions you may have.

Believe you will be OK.

Sending you hugs!

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