Mammogram?

[JustmeMary]

Hello ladies - I have a question about mammograms once you’ve been diagnosed with MBC. I was diagnosed in July and had radiation then started Ibrance and Letrozole. My most recent ct scan showed no progression so far. My radiation oncologist has ordered a mammogram which I am scheduled to have tomorrow. I guess It’s just not clear to me why or what good a mammogram is at this point. Have any of you had mammograms since your MBC diagnosis? Just curious.... 😊

[kearnan]

I did. I was on Ibrance for only three months when first diagnosed and I developed an infection in my leg (an inside kind of boil). In the past, I would go to the doctor the minute I felt it and it would disappear (this was after the first time not taking it serious and being able to walk and wound up in ER.) I would be given antibiotics and then it would just go away.

This time bc I was on the Ibrance and it compromises the immune system, it did not go away and it got worse and worse even though they put me on antibiotics. I had to finally be the one to say why am I still on the Ibrance if the antibiotics are not working. It is not going to work as long as I am on the Ibrance (DUH). So my onco took me off but it got worse and I had to have very invasive surgery when they cut tunnels in my leg. They told me that the recovery would be excruciatingly painful which is and then some and I lived alone which made it 10 x harder.

I was told a month recovery but it took almost four months for the holes to heal (they need them to heal from the inside out) so all that time I was off the Ibrance and only getting the injections.

So before they started me back on, they wanted me to have an ultrasound first (so then I had to go to the breast cancer center again which was around the corner) and then they seen something so I had a mammogram and then again they did bioposies. I didn't even ask why I figured eventually I would be told. They found another small cancer tumor behind my original one (I was diagnosed stage iv so never had chemo, radiation or mastectomy). But the biopsies showed that the second tumor has the same characteristics of my original diagnosis which was ER positive so for the most part it was no big deal, I just continued on the treatment I had been on. I had no idea up to then, that you could actually get two different types of breast cancer in one breast. But since it was the same I just stayed on the same treatment.

[JustmeMary in reply to kearnan]

Thank you for responding Kearnan - I replied earlier to you but have no idea where it went LOL.

[Eliactida1955 in reply to kearnan]

Sorry to hear that and hope you are doing better. I just got over a boil on my breast it took over a month to heal. My internal medicine dr ordered an ultrasound and mammogram but the onc never called me. I see him soon but the ultrasound showed small area in original breast but it wasn’t the breast with the boil. I have been getting pet scans every six months so my next one is March. I have questions why the ultrasound saw this and why are we relying on the pet scan. Anyway my breast healed but there is a scar. Watch out for them because skin rashes and I guess boils are a side effect of Ibrance. You are lucky if it didn’t spread because my friend had one near vagina and it went too far she ended up in hospital and rehab for 4 months as they had cut part of her labia out to save the sepsis area. Be strong and good luck to you -hope you are better.🙏❤️✝️

[Hidden]

I haven’t. My Oncologist said it wasn’t necessary as they look at the blood results every month and rely on self examination. I have MBC and have been on Ibrance, Letrazole and Denosumab for 19 months. Hope this helps.

[JustmeMary in reply to Hidden]

Thank you. Yes, it helps and that was my understanding when speaking to my medical oncologist last month.

[Beryl71]

I had one a couple of weeks before my diagnosis. I was so pleased that it was clear , then wham, the bad news , so that seems strange. I' ll no longer be called because of my age.

[Justme153]

Yes I only had a mastectomy of my left breast . I have a mammogram of my right every year. These have been ordered by either radiologist , oncologist, and gynecologist. Never really thought about it . I figured if they felt it necessary I have it done. But you are correct from what I read here once we are MBC they no longer do surgery. The only thing I can figure is it is less expensive to do a mammogram and find progression then to do a pet scan or CT scan. Mammograms are considered maintenance by insurance companies so are approved. CT and PET and MRI need to have a new reason like a change in phosphate numbers or something else for the insurance to cover it. Doctors have to have a reason to order these scans .

[kearnan in reply to Justme153]

I live in Brooklyn, NY and I have CT scans every three months since the day I was diagnosed. The breast cancer surgeon had first ordered a PET scan but said that medicaid would probably not approve but that was okay bc a CT scan would really tell her what she needed to know. It was after the CT scan that they found it was in my lungs so when I went back, she told me that the treatment plan was off the table bc it had already spread. Believe it or not, I was relieved bc I did not want a mastectomy. So I get CT scans every three months and it seems every other CT something new pops up.

The only reason they gave me the ultrasound to begin with (with then what they saw made me do a mammogram) was bc I had been off the Ibrance for four months while trying to heal from the surgery. A mammogram (I thought) was only for the breast.

I realize I knew nothing about breast cancer and how many types or stages there were. I was that stupid. I then read the average age for a woman to get it is 57. So being typically average, I was 57 when diagnosed. I was shocked to learn that 1 out of 8 women get it. That is alot of women.

Here in NY, it is pretty common with women to have CT scans every month but probably people like us with stage iv. So I have always and continue to have them every three months.

I do not think the type I get (I do not get the Pet Scan) is that expensive.

"A CT Scan in New York costs $1,126 on average when you take the median of the 361 medical providers who perform CT Scan procedures in New York, NY. "

I think bc I am stage iv medicare and medicaid pay for it with no questions.

[Justme153 in reply to kearnan]

I know the pet scan I had was listed at 6000.00. I think the MRI was 5500.00.

[kearnan in reply to Justme153]

Yes, PET scans are more much expensive that is why when I first went to the breast cancer center, she told me that she was putting in for that but that most insurances would refuse to pay for it bc basically they felt that a CT scan which is much cheaper, can do the same thing. The breast surgeon said for what she needed it for for my purpose, a CT scan would show her what she needed to know and of course they refused and I had a CT scan and that is how we found it it was stage iv.

[lynzer in reply to kearnan]

Who is your oncologist, if you don’t mind sharing. I see Dr. Astrow at NY Presbyterian in Brooklyn. Lynn

[8576 in reply to kearnan]

HI: Just reading over your post again. That was a terrible experience to have and to deal with on your own. So sorry that you went through that but glad you have found this forum. Also, on reading Justme153 and the others it seems there are so many oversights or mistakes made including in my own case. Bares saying again we have to be our own advocates.

Cheers, June S.

[hdhonda]

Dear Mary,My docs say since I am under treatment for breast cancer that mammograms are not necessary. My internist keeps wanting me to get one but I don't. Blessings Hannah

[hopenowandtomorrow]

I do not have annual mammograms on my remaining right breast after being diagnosed with MBC. I was told my CT/PET scans every 5 months plus the IBrance, Faslodex & Xgeva treatment make mammograms unnecessary. Plus I had mammograms & ultrasounds my whole adult life every year. Neither showed the left breast cancer I had that resulted in the Masectomy in 2016. I’ve been told because my cancer was in a duct it was very hard to detect. After all the chemo, radiation & drugs, I ended up getting breast cancer in my left pelvic bone less then 2 years later. That went undiagnosed for about 8 months. Good news is now I’m in remission. Staying on drugs for life. I hope that helps.

🙏❤️🙏

[lynzer in reply to hopenowandtomorrow]

Same combo of meds for me. Although, I went to Sloan Kettering for a second opinion and they recommended one. I feel the extra radiation is prob unnecessary but I don’t really know.

Btw: do you get Faslodex injections?

Lynn

[hopenowandtomorrow in reply to lynzer]

Yes, I get Faslodex injections.

❤️🙏❤️

[seiler]

I have had several in my other breast. Since the doctor wants you to have a mammogram, you must have a mammo to scan!!! My guess, and t's only a guess, is that your doctor thinks a mammogram is more exact than the other tests, based on various things. But have no fear in asking him or her. Keep asking more questions till you are satisfied.

[jersey-jazz in reply to seiler]

I have a very bad taste in my mouth about the indiscriminate use of mammograms, especially on patients with dense breasts. I had a mammogram but no sonogram seven months before I was finally diagnosed with bilateral breast cancer with HER2 on one side with twelve positive lymph nodes and hormone positive on the other. I had gone for the scan worried that there were things happening in both breasts. I was relieved when the letter came stating in bold letters, "NEGATIVE". Then, near the bottom, in small letters it stated that, " Dense breasts may obscure malignancies.". That's me. Months later, when I was scanned again, at my request, I was diagnosed with the malignancies. I believed that they were discovered by the sonogram because, "dense breasts" was noted again.. Since then, I have acceded to numerous mammograms. After reading something on this posting, recently, about mammograms and MBC, I argued the point this last time. In fact, I refused.

What is the point? Is it really about insurance?

(Last July, I had cryogenic surgery for recurrent breast cancer and, on New Year's Eve, biopsy of the liver to confirm my graduation to metastasis).

[8576]

Not so nice that we get conflicting advice like this. I don't have mammograms because I dislike them so much. I find them rather barbaric and can't help thinking there has to be a better way. But that is just me. This is in spite of the fact that I was told I should have mammograms as they show images that don't come up any other way.

I wonder what Mayo Clinic says. I always think they are the best source.

Cheers, June S.

[kearnan in reply to 8576]

This is cited by the Mayo clinic which also shows why we have different reasons for why some cancer centers may give them while others do not. Just bc we all have metastatic breast cancer does not mean we all need or have the same medical treatment.

"Tests and procedures used to stage breast cancer may include:

Blood tests, such as a complete blood count

Mammogram of the other breast to look for signs of cancer

Breast MRI

Bone scan

Computerized tomography (CT) scan

Positron emission tomography (PET) scan

Not all women will need all of these tests and procedures. Your doctor selects the appropriate tests based on your specific circumstances and taking into account new symptoms you may be experiencing."

[8576 in reply to kearnan]

Thanks for the info. Never the less, why, if mammograms show more and would they are recommended for everyone but this is not passed on through the doctors. I do understand that we are all different and need specialized care if we can get it. The trouble lies in Doctors are all different and administer care differently! Hence lies the confusion for us. I, right now am dealing with two oncologists, at opposite ends of the spectrum. One being new the other having 20 yrs, experience and is very wise. My dilemma is getting to the more experienced one because of travel time.

Also, read Hannah's reply to Mary. Something like this should be standard or not. We all got different answers to a simple question.

Cheers, June S.

[Amm1]

Hi I had a mammogram every year for the first 3 years after MBC diagnosis, then I was told I didn’t need them anymore so had none for the next 3 1/2 years. Then I changed oncologist and she was concerned that I have not been getting mammograms because I’m 57 and could develop another breast cancer so I had one a few weeks ago. 🤷‍♀️ Anne

[8576 in reply to Amm1]

Isn't that a case in point, same patient two different answers. This is just one of the reasons we have to be our own advocates. I think it is good that you are getting mammograms. They just might find something they hadn't thought of. (I know this sentence is composed wrong).

Cheers, June S.

[Teddielottie]

I am due in the next few weeks for my annual mammogram on my non -affected left side . My onc still wants me to continue to have these , even with MBC (stable bone Mets for the last couple of years🤞) and on Ibrance . She said if anything was detected early she would arrange for me to have a small op . I am nearly 57. x

[Nocillo]

Yes I have them every year. My first doctor who has been in the field for 40 years said, “If you have a breast, you should be getting a mammogram.” I also wondered why with all the other scans. Hard to understand but fairly easy to do.

[Kaydub]

I had one on the schedule for January but when I asked my oncologist about it she said no longer necessary. This is MSK.

[Photo-Bug]

My onc. said I didn't need any more mammograms. If one would be needed, she would have a breast MRI scan done instead. That's not the easiest scan to do especially if you have so many fractured ribs as I do.

[Eliactida1955]

I’ve been having pet scans but recently had a mammogram because of a boil on the right breast . I had an ultrasound too and it showed a small area of concern on my affected breast so I’m kinda worried. I didn’t show anything with the pet scan. My onc never called me but I see him in a few days. I have questions why maybe an ultrasound is better to see these things. The boil was just that a boil. It was on the opposite breast also .my internal medicine dr had ordered it. We will see what the tumor markers show in a few days. I had my vaccines so done with that and no reaction with the Moderna one. I didn’t ask the onc before I did it. Stay strong and think positive so cold here the worse in 32 years is comming on the 16th . Brrrr stay safe and warm. 🙏❤️