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More tests ... Breast issues this time

evolo58
Posts: 293
Joined: Dec 2017

Freakin' crap. Freakin', freakin' crap.

I went for a mammo last week, and they want me to come in for additional testing. They want me to come in on NOVEMBER 7TH!

Seriously? What madness is this? You make me wait more than a week, never tell my oncologist at the other facility, who really should have been the one to tell me first and who was handling my endometrial cancer, then make me wait two and a half weeks for more testing?

This was done at another institution. I am going to see if this can be done at my oncologist's facility. This is the bloody tech age. How long would it have taken to forward the results? This makes me believe they never notified my gyno-onco. The place I go to calls you really quickly if they so much as see a tiny dust speck inside me.

My appointment for the endometrial cancer follow-up is the 30th. I would like to think additional tests could be done before then.

To say I'm devastated is an understatement. Please pray (boy, I'm asking a lot of these!) that this is simply a nuisance and not anything of concern.

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

What kind of additional testing are they asking for? I've had numerous lumps, lumpectomies, needle biopsies, etc. through they years and they all came out negative. Sometimes our bodies grow things that aren't cancer, so keep that in mind. I can't say that it's nothing - nobody but god knows that - but I can say that, since you already have one type of cancer, they're probably being super cautious. Hang in there! (Easier said than done)

MAbound
Posts: 854
Joined: Jun 2016

I have dense breasts and they have given me grief for mammograms ever since I started havine them. They see things like "asymetrical areas of density" or other suspicious things so often that it seems like I'm always being called back for repeats or other testing like ultrasounds and they always squish me extra good and it is so painful. They've never found anything but a few cysts my last go-round, but they sure cause a lot of anxiety. I know it's not easy to remain calm when they do this stuff, but like Der Maus said, they are probably being extra cautious covering their butts because you already have the endometrial cancer. 

oldbeauty
Posts: 189
Joined: May 2012

I suspect they are super-cautious when they know you are a cancer patient already.  I went for a mammo towards the end of my chemo last year and got called back for a 3-D imaging and then got called back for a biopsy!!  To say I was freaking out and terrified is an understatement.  I also have dense breast tissue.  I distinctly recall both the radiologist reading the films and the one doing the biopsy telling me that it would be early stage carcinoma in situ and not to worry.  In the end, I got a 2-word "benign calcification" pathology report, which pissed me off no end.  I'm sorry you're upset; most likely it is not a new primary.  But I'm glad you are on it and will follow through.  Best wishes, Oldbeauty

evolo58
Posts: 293
Joined: Dec 2017

There is something in one quadrant that they want to look at, though they're doing a CAD of both breasts as well.

About the only thing that isn't making me completely freak out is that that I've now heard from several ladies who had a similar experience. Thank you for sharing them!

Look. If this is a just-in-case, great. But the lady delivering the news almost delivered it in a monotone. I think she would have more empathy reading a grocery list. She refused to elaborate, and I don't see the mammo results on the portal. Odd, since my facility will usually post test results in a few days, positive or negative ... NOT six business days later! About the only exception was the surgical pathology report, but that is pretty obvious why. I only see the two appointments and tests to be done.

I've had three chest CT scans read by three different radiologists and eight rounds of chemo, for Pete's sake; the last CT scan in July. But I also have to realize that this is my first post-treatment scan. They might be acting extra-careful. I have dense breasts as well, and had two biopsies done in one quadrant. They might be doing an extra check of that quadrant. 

I plan to have any follow-ups done at my gyno-onco's office. No more middle-people. I'm waiting for the gyno-onco to respond, but according to the portal, she did not access my chart at the other place. It might be that she isn't even aware of this, so I know I need to be patient. My PCP already responded, and even she thought the month-long period was unusual.

But I did NOT need this, obviously! I am already on pins and needles from this Stage 4B UPSC.

Honestly, if it wasn't for the P16, I would think that this was an endometrioid cancer. It acts like one in so, so many ways. 

SF73
Posts: 258
Joined: Oct 2017

Ugh. I have dense breast tissues also. I should get them tested. evolo, I am sorry that you are going through this. You definitely do not need the stress of this. Are breasts even a common site for endometrial cancer recurrence? This paper does not mention breasts. I really hope they can see you earlier so that you don't have to worry until November. 

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I am praying its nothing and they are just being extra careful.

Northwoodsgirl
Posts: 519
Joined: Oct 2009

I am sorry to hear how the breast center has treated you. Totally unacceptable in so many ways! You may want to call  your  insurance company and complain and ask them if there is another breast center in network. There are lots! 

Ughhhh! I can totally relate to the angst in your situation. Call the mammography center back and demand a sooner appointment or call another breast center that has 3 D technology. The follow up DIAGNOSTIC image and ultrasound should happen within days. This is no longer a “screening” mammogram but rather diagnostic. Having the diagnostic mammogram weeks later is totally unacceptable! I got called back last year after having 3D mamm too. I had repeat mammogram and ultrasound and it turned out to be nothing. I too have dense breast tissue.  I was also called back about 14 years ago. Never had a biopsy or a “tag“ or marker placed in my breast as some of my friends have had. 

FYI : When we have preventive annual “screening” mammogram it costs us nothing because it is considered “preventive” but once you need another mammogram because the radiologist sees “something“ then the repeat mammogram and is considered “DIAGNOSTIC“ and the insurance out of pocket expense ( your responsibility) deductible and co-pay kicks in. I understand that is not a concern for you but important for us to understand as consumers. 

 

MoeKay
Posts: 203
Joined: Feb 2004

I used to get my mammograms done at a local outpatient facility.  Sometimes I would get calls that additional views were required, other times I was told I needed an ultrasound.  Over the years I had a needle biopsy in one breast and a stereotactic biopsy in the other breast.  So when a mammogram I had about 7 years ago indicated that I needed biopsies on both breasts, I decided I was going for a second opinion on the mammogram.  I scheduled an appointment with a top-notch breast surgeon in Philadelphia affiliated with Pennsylvania Hospital Center for Breast Imaging.  I took a CD of my mammogram with me to my appointment.  After reviewing it, the breast surgeon concluded that I did not need either of the two recommended biopsies.  The surgeon said for sake of completeness, she wanted to have her own radiologist review the mammogram films as well.  She had me wait in the office and about 15 minutes later she returned and said her radiologist was in agreement that I didn't need either biopsy.  The surgeon followed me closely for a couple of years just to make sure all was stable.  Since then, I only get my mammograms at the Center for Breast Imaging, and I have not had to get any further ultrasounds or breast biopsies. 

Given the type of treatment you've been getting from the facility where you had your mammogram, I would suggest that you try another institution that has a reputation for providing a high quality of care.

Best of luck to you. 

evolo58
Posts: 293
Joined: Dec 2017

With some prodding from my PCP at this facility, the other place moved up the mammo to the 25th, but I elected to do this at my current one, also the 25th. It seems to think I love 8 AM appointments, though! :) I'm trying to get my films from the other place. STILL no indication on that place's portal what they found.

It turned out my gyno-onco got nothing from these people, which was why the center did not contact me. Supposedly, my facility got the info this morning, but my gyno-onco STILL didn't get the info, and that was as about 3:00 or so today.

My mother and I have experienced moments when we needed more tests. My timeline for the endometrial cancer was about a week and a half from CT scan to biopsy to diagonsis and treatment plan, and that was incorporating a holiday weekend!

I always liked the facility where I get my mammo, but things really seemed off this time. MANY more callbacks than I saw before. Really long delays ... one poor woman was kept waiting for an hour after her yearly mammo because the place needed more tests that day and was not telling her a thing (so why did mine ... oh, never mind). I'm having the diag done at my faciilty. My gyno-onco needs to work on her bedside manner and phone news can be a little scary and initially imcomplete, but at least they don't keep me waiting almost a month! If they so much as see a dust speck in me, they're on that phone telling me to come in.

I am reading even more accounts from ladies post-gynecological/breast surgery who get called back a lot post-surgery. That is truly, truly reassuring ... thank you so much! I know there is a link between some endometrial cancers and breast cancer (though usually, it seems to be the other way around ... breast cancer first), and this may be why the place is being extra-careful. 

Too bad, though, there isn't some way a lady can find out whether these follow-ups are "just-in-cases" or "oh, craps". HUGE difference here! But I guess the institutions having mammos don't want to get sued. 

evolo58
Posts: 293
Joined: Dec 2017

the question between that screening mammo and that diag mammo waiting time on the breast cancer board. Maybe I've been spoiled over the years, but I'm not sure what to make of that.

--Were they trying to see if something went down, such as an infection? I didn't feel anything. Neither did my gyno-onco when she did a BSE in November. None of the three chest CT scans with contrast found anything in that area, there were three different radiologists reading the reports, and they were looking pretty thoroughly at that region.

--Did they do a bad reading? But then ... why the emphasis on the left breast?

--Is this a just-in-case follow-up? It would have given me peace of mind to know that.

--Why didn't the place schedule me for October 25th in the first place? Obviously, that slot was open. This was not a screening mammo.

--And why isn't any of MY doctors getting the info as I requested? They can't answer anything because they are as much in the dark as I am!

This is how to really, really stress out a patient, and make the patient really ticked-off in the process. 

pinky104
Posts: 574
Joined: Feb 2013

My maternal grandmother had cancer in both breasts at the same time when she was in her 60's.  I wasn't even aware she had it.  My mother had cancer in situ in one breast at 74 and another cancer in a different site in the same breast almost 10 years later.  My sister has been called back after her mammos several times, and every time, the result turned out to be negative.  My cousin, on the other hand, was found to have cancer in one breast last year.  My mother had a lumpectomy the first time she had breast cancer and decided to just get rid of the breast the second time around. I was amazed when I picked her up to go home that she had absolutely no pain at all post surgery.  I would have expected an 83 year old lady to be in a lot of pain, needing lots of assistance after surgery.  I was very wrong.  I had genetic testing after my second bout of UPSC last year, figuring I probably had inherited a BRCA gene, but one wasn't found.

If you do find out you have breast cancer, I hope you have an easy surgery like my mother did. 

I should mention that I've been on Evista (and now the generic form of it, Raloxifene) since around menopause when my family doctor read some paper that said that Evista had been found to have a side benefit of protecting women against breast cancer.  It's a drug that helps to prevent osteoporosis, and so far, it's worked for me in both ways.  I should knock on wood because I'm due for my mammo again next month.  I also have dense breasts but so far, I've had no call backs, probably because I'm fairly small-busted. 

barnyardgal
Posts: 208
Joined: Oct 2017

I got called back a few times for another mammogram and ultrasound. At one point they wanted to do it every six months. I did that 3 times and said that was enough. I had dense breasts, and other family members seem to have the same issue with mammograms.

 

evolo58
Posts: 293
Joined: Dec 2017

Like a fairly common procedure with women in our situation ... doctors being ultra-careful with the pups. So far, I have heard from at least eight women on two different forums who found their call-back mammos increased after they had endometrial cancer. I believe it was up to or past a dozen women.

I FINALLY read the report after almost two weeks. My facility never received it until I hand-delivered it yesterday, and heck yes, I took a peek. I feel better knowing what my current facility will be checking ... what is actually there to check. The mind can play awful tricks on you. 

Keeping patients in the dark like that was wrong. Judging from the panicked ladies at the breast care center, I was not the only one freaking out.  Really, medical schools need an extensive course on how to notify patients if they need extra tests, and doctors and nurses should be required to pass it. 

Miss Cee's picture
Miss Cee
Posts: 1
Joined: Oct 2018

On July 16th I was sent to an Oncologist Surgeon because my regular mammogram showed abnormalities.  He advised me that I had papilloma and tumors and need surgery. 1 surgery, 2 MRIs and biopsies.  Can't take the meds prescribed by the oncologist because it can more bleeding during the surgery.  I am scheduled for yet another surgery on November 2nd (yes 4-1/2 months.  I feel like I'm caught in a gravity-less with a giant meteor hurtling at me faster than the plan of treatment is being initiated.  My sister treated me to a very nice lunch for my 65th birthday, but reality struck me hard.  I appreciate all the info you all have shared.  For anyone viewing these posts - stand strong.  You are not alone!

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