Recurrence after bilat mastectomy?

PaulaDurao57

I'm so tired of being in pain and ALL of the side effects from chemo...My oncologist won't write me a RX for medical marijuana, but she'll give me percocett and vicodin, which r both very addicting and they make me sick to my stomach and shaky! I have a high threshold for pain and take advil even after double mastectomy...But I tried pot and it really helped...But i have no where to turn... xo Paula

barbe1958

Paula, just buy it on the street. That's what I've done. It's cheaper than MM anyway.

hsant

Paula, I don't know much about this, but you may want to look into doctors who exclusively see patients for MM evaluations. Chemo sucks in and of itself. You should be as comfortable as possible

https://www.marijuanadoctors.com/medical-marijuana-doctors/CT

Artista928

Paula, can your pcp write you the rx?

OceanSky

I posted here last year with pain in a rib, and my sonogram showed my rib pain to be an odd rib issue.

This week, (a year a half after my double mastectomy) I'd found a small lump. It felt like a small BB. It was not on an incision line, but on the foob, over the implant and near but not over the site of my largest tumor.

On Wed I had a sonogram and biospies. The doctor said 'Often times these are fat necrosis, don't worry'. I wasn't too worried.

Today I got the call that it was cancer. The same IDC that I originally had.

They're going to contact my insurance to get an okay for a PET scan and a CT. I'll need to have it excised with the BS and the PS.

Be vigilant. This was small...

Meow13

ocean, I'm so sorry. I am in your circumstances they think it is fat necrosis but I'm worried.

We have to take solice in it is small.

OceanSky

I hope yours isn't cancer. I learned today that mine is.

I wish you the best. Respectfully, we're not in the same circumstances.

The size is not the issue. They assured me there's no way to know if it's spread.

OceanSky

ocean, I'm so sorry. I am in your circumstances they think it is fat necrosis but I'm worried.

We have to take solice in it is small.

Quoting your reply above.

My reply:

I wish you the best.

Respectfully, we are not in the same circumstances. I learned today that mine is cancer.

The size is not as important as some may think. My MO wanted me to understand today that size is not relevant and there's no way to know if the cancer has spread.

Wishing all the best.

OceanSky

Blueorange

paula,

Try false lashes! I'm so sorry you are going through this 💖

SKD

hi ladies! Well I have read most this thread on this board trying to look for some positive answers and not freak out over the Christmas break. I found a lump right above my mastectomy scar. I went to the dr immediently, got an ultrasound the next day and a biopsy the following day as the ultrasound showed a suspicious white dot. I have to wait until late next week to find out the core needle biopsy results. Anyone else have a suspicious ultrasound and then it turn out to be something else? I definitely feel a lump, it's about 2cm and it's closer to my arm pit but o don't have lymph nodes so it's not a swollen lymph. I might also add that I am pregnant. I miss hoping it's hormones but I'm preparing myself for the worst

jmb5

SKD, I had a biopsy last summer because I found a lump (2 1/2 years after my mastectomy). It was hard and round, about the size of a pea. It ended up being fat necrosis. I had no idea it could form so much later after a mastectomy. I was worried, but thankfully it was nothing.

SKD

jmb.. that's great to hear. did they do a biopsy because they saw something suspicious in the ultrasound?

How do they get rid of fat narcosis

Emily2008

SKD, if it's right above the mastectomy scar, it very well may be fat necrosis. Some people have it surgically removed because it can cause discomfort and it can be a cause for worry just by its very presence. Others don't bother with having it removed since it won't ever change into something malignant.

Let us know what you find out! Best wishes!

Mommyathome

if it's fluid filled it can be aspirated. I have mine aspiratedevery 6 months after having fat grafting to fill in areas after my bmx. There are far necrotic areas that filled with fluid that cause me pain.

SKD

thanks ladies, you are giving me so much hope! does fat narcosis just appear? Does it grow over time? I felt my lump, which is probably 2-3cm big out of the blue. I check frequently so was shocked to feel it and surprised I had not noticed it before

Still no word on the biopsy. Hopefully tmo or Friday they call.

KBeee

I think fat necrosis can occur pretty quickly. Any word on the biopsy? Hoping it's benign

SKD

Thanks, I feel like the lump occurred over night and was big. still no word on the biopsy. They said with the Christmas holiday it will take 5-10 business days. Hopefully tomorrow I find out

SKD

hi ladies,

I got my results back and it's a reoccurance of IDC grade 3. Don't know much else but it could be a lymph node. I Have to see the surgeon Tuesday and he will decide what to do next as I am pregnant right now (just to make things a little more complicated..)

Mommyathome

skd

Sorry to hear it was cancer again! Did they just aspirated fluid or did they do a biopsy/lumpectomy?? I have fat necrosis that causes me pain if it's not aspiratedevery 6 monthsbut they check only the fluid they aspirate.

slmdavidson

SKD,

Just wondering how you are doing! I was the originator of this thread but haven't been on here for a few months so just seeing your posts now. So sorry that you are having to deal with this again. Let us know how you are doing.

Take care!! Laura

Jennjdance

Ugh. I'm back. I'm 39 years old. In 2010 I had stage 2A triple negative breast cancer, double mastectomy, tram flap surgery, and chemo. Four years later, I got a new primary on the other breast. Also stage 2A triple negative. This time chemo and radiation. It's been 2.5 years.

So 7 years ago right after my mastectomy I developed a fat necrosis in the breast where the cancer was originally. We kept watch on it and it seemed to disappear. But a few weeks ago I felt it again in the exact same spot. Since I hadn't felt it in a while I went to see my dr. Now unfortunately my regular oncologist just moved so this is a dr I've never seen before (a breast surgeon). I was discouraged because he had no knowledge of what the original lump felt like compared to this one. But he was nice. He said that it felt like scar tissue or necrosis to him and that it might have been the original lump and since my weight has fluctuated a lot in the last few years that it's harder to feel when there's more fat and easier to feel with less fat- I recently lost 17 lbs. He told me to relax, he felt it was very low risk, but he wanted me to get an ultrasound just to be sure.

Today I went for the US. The tech told me at first that it looked like scar tissue to her. Then the dr came in. He said that the mass exhibited characteristics of both scar tissue or fat necrosis as well as cancer. He noted that there was shadowing but scar tissue can have that too. He told me he wanted me to get a biopsy.

Then my dr (the breast surgeon) called me after getting the results. He agreed we needed to biopsy. I pinned him down for an answer this time- does it look like cancer or not?? The last two times I was diagnosed, the drs seemed to know right away that it was. He told me that he's still leaning towards not cancer, but the mass has characteristics that could be either. Like- there's shadowing. It's irregular shaped. (Drs told me both characteristics of cancer or necrosis/scar tissue) Then he said that on ultrasounds, cancer usually shows up really dark. But this is showing up very bright, much brighter than the tissue. So I'm hoping that's a good sign, though I'm wondering if that's bc the tissue in my breast isn't breast tissue. I have no clue.

The breast surgeon told me that it's so unlikely to develop a new cancer after a double mastectomy, but even more unlikely to develop one after that. Is this true? Has anyone been through this? Can one develop scavtissue or fat necrosis after 7 years??? Does any of this sound familiar to anyone? Please help!

Jennjdance

oh one thing I firgot to mention....the radiologist looked up my past ultrasounds. The last one I had on this breast was 3 years ago and there was a cyst there but no mass. Now there's no cyst, but a mass. So it couldn't be the original fat necrosis.

Meow13

Well I had changes due to fat necrosis 5 years after Mx and DIEP they did a biopsy and it was just fat. Oncologist was amazed that after 5 years changes are still happening.

Jennjdance

was it a hard mass? Did it show up on an ultrasound

Tankweti

iI have some potential answers as to.how cancer can return after mastectomy. Either there are some remaining cells in the chest wall or the cancer had already disseminated into the bloodstream before it was discovered the first time. Medicine presently has no good test to identify the presence of these DTC's (disseminated tumor cells). Physicians talk endlessly about lymph nodes but never mention the fact that the cancer can also spread hematogenously (in the blood - by eroding their way through a small blood vessel).

Cancers also have the nasty capability of going dormant. All of you who remember the cell cycle lectute from high school biology - that is what is at play. The cell "arrests" in G0 phase and goes to sleep. Science to this minute does not know what causes it to wake up nor what causes it to arrest. Once it wakes up, it begins dividing and spreading. None of the usual blood tests can detect this early on. Google a pic of the cell cycle and you should be able to see it.

As far as someone's Tamoxifen question as to how it causes cancer of the endometrial lining of the uterus...it is well known by the World Health Organization that Tamoxifen is a carcinogen in its own right. A cancer causing agent. All cancer patients should be educating themselves on the concepts of relative and absolute risks of recurrence. Relative risk refers to the entire population in question while absolute risk refers to your own personal risk - which for most of us, the absolute risk recurrence is in the single digits. The question is - does a risk in the single digits constitute taking a calculated risk of taking Tamoxifen which is already a known carcinogen? It was Tamoxifen related endometrial cancer that killed Shari Lewis who had been in remission from breast cancer. When she discovered she had endometrial cancer, it was also discovered that this new cancer was of a very aggressive form.

Tamoxifen is the standard of care for breast cancer and all oncologists are going to recommend it. The thinking is that if you get some type of uterine cancer, they can always remove the uterus. Taking Tamoxifen is something every breast cancer patient should think long and hard about before they agree to take it.

If you are advised Tamoxifen and decide to take it, be sure you get yourself to your GYN doc before you ever put one pill into your mouth. That doc should be ordering a transvaginal ultrasound to get a baseline resding of the topography/geography of the uterus. Do you already have polyps? Fibroids? That tells them what is already there before Tamoxifen is started. You will need to ask your doctor as to how often this should be repeated. My onc, when he recommended Tamoxifen, never mentioned any of this nor did my GYN. In addition, I never had children. After menopause in women such as myself, the cervix closes. I never knew this until I started asking very pointed questions of the GYN as she was doing a PAP smear. I could feel she was having a hard time getting the sample. She explained why. I asked her how would I know if I had bleeding from a growth in the future. She said the blood would "likely find its way out" - a very alarming statement.

I would encourage all who read this to verify it independently thru their own research.

Jennjdance

Just heard from the dr! NOT CANCER!!! Fat necrosis!!! I literally had convinced myself it was cancer again, even though all signs pointed towards necrosis. Thanks for all of your support!

MinusTwo

Jenni - great news. Happy for you.

slmdavidson

Great to hear that it wasn't cancer!!! Love to hear this! Take care!

KBeee

Great news!!!!

Simplicity

Morning ladies. Hope all are well. I am 2 yrs out from dx, 2 yrs out from BMX Sept 4th. I have lumps above right breast, not close to incision, that the ONC and Surgeon both think we should go for a ultra sound, and likely a biopsy on the one nodule that is most prominent. The surgeon found on just below that one that she 'is even more concerned about'. How invasive of a biopsy depends on the US results.

She mentioned a possible local recurrence. Very close to the skin. The other is a bit deeper, closer to chest wall. I have 2 choices depending on US, have the one removed in office, or have both removed in hospital. I know I am jumping the gun, but so is the Dr. Tried to get me to make a choice Friday, and I was snappy with a 'I have to decide NOW? Before the biopsy?' Such assholes sometimes.....ugh....