20 years out - Now I'm scheduled for biopsy!
I got a call back on my annual mammogram 3 days ago to have a Ultra Sound. After they did the ultra sound, they are now recommending a biopsy which I will have done tomorrow. I am totally freaked out. I am a breast cancer survivor of nearly 20 years and was so hoping I had this thing licked. This year was the first time they've done the 3D mammorgram on me. I've always had diagnostic before. About 3 years ago, I got called back for ultra sound of this same location and they said it was scar tissue. It's right on my old surgical scar line. The radiologist says that he finds it hard to believe that I would get cancer back on this same spot after this long. That spot has always felt hard to me which makes it difficult to do self-exams. However, he says the spot he's looking at was not there on my mammogram last year so, in light of my history, he wants to check it out, which is good thing. This just makes me really, really nervous. Has anyone had something like this happen to them when they are almost 20 years out from the time of their original diagnosis. By the way, I had 6 nodes positive at time of original diagnosis so I've really been fortunate. I just hope and pray the other shoe hasn't now dropped. I had a lumpectomy at time of original diagnosis. My cancer was estrogen positive. I had a hysterectomy 12 years ago which has taken care of my estrogen (I assume). I was 44 at time of original diagnosis. The nurse suggested possibility of fat necrosis? Anyone had experience with this? Any input would be greatly appreciated.
Comments
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Hi 123abc1611, We are sincerely hoping it is all negative, and understand how anxious you're going to be this week. Know that we are here for you, routing you on!
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Could be fat necrosis. But your assumption that a hysterectomy (even one that removed the ovaries) “would take care of the estrogen" is a common misconception. We still make estrogen long after our ovaries stop working or even get removed. Our fat cells and adrenal glands make an androgen (putting it simply). Our livers secrete an enzyme called aromatase, that acts on the androgen and turns it into an estrogen. So those of us with estrogen-receptor-positive tumors need endocrine therapy to keep those stray tumor cells from getting the estrogen on which they feed--either by blocking the cells' access to it (SERMs like Tamoxifen) or keeping aromatase from helping our adrenal glands and fat cells make it, by taking aromatase inhibitor (AI) drugs that block the action of aromatase.
But here's the rub--at present, that's just about the only way to starve tumor cells of estrogen. We can't live without our adrenal glands or livers, so removing them's a no-go. And as to fat cells, the unfortunate reality is that while men can only fill or shrink fat cells (hypertrophic obesity), we women can not just fill but also actually make more of them (hyperplastic obesity)! We can lower our body fat percentage by weight or volume, but those fat cells just shrink--they don't disappear. The only way to get rid of fat cells is surgically (excision or liposuction), with all its attendant risks.
This is why our oncologists tell us it would be nice if we overweight women could lose weight (it improves our health overall, which makes us better able to handle the effects of treatment), but tell everyone to try to at least avoid gaining weight after diagnosis. Weight gain, in the case of women, might involve creating new fat cells...which would make more androgen and cause aromatase inhibitors to have to work harder to keep aromatase from turning it into estrogen, or tamoxifen to have to work harder to keep it away from tumor cells.
All of the above assumes, of course, that your tumor was estrogen-positive. If it were ER- (and PR-), then estrogen's not an issue.
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ChiSandy, thanks (I guess) for straightening out my misconception about my hysterectomy . I've had several people tell me that and it made sense to me. That fat cell thing concerns me too. I'm not obese, but I could sure stand to lose a few pounds. I remember when I was first diagnosed my husband kept bringing me home Twinkies because he thought they would make me feel better!
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Show me someone who didn’t throw themselves a comfort-eating pity-party after diagnosis and I’ll show you an already vegan athlete.
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I'm not a comfort eater. When I'm worried, I have no desire to eat whatsoever which means I will end up losing weight over this. However, I can afford to lose some weight so some good will come!
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That is a long time.....When you had the mamo and Ultra do you know what your BiRad Score was? Liz
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I hope all is okay. Good to get the u/s and biopsy so quickly I hope you get good results and that the biopsy results come back quickly. Take care.
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No, I sure didn't. That must be something that they weren't doing when I was originallt diagnosed in 1997. What is that?
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Hi
I was DX in December of 1999. I've had multiple biopsies since DX, the most recent being in June after new Microcalcifications appeared very near my original tumor site. I had a core needle biopsy and an excisional biopsy. The final pathology was Flat Epethelial Atypia and Atypical Ductal Hyperplasia. Neither are malignant, but ADH is 'pre-cancerous'. I'm taking Tamoxifen again as a preventative measure.
Not all biopsies, even after cancer, turn out cancerous.
I'm still cancer free coming on 17 years now
Tracy
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Thank you so much for your reply. Good to hear from another long-term survivor. I'm supposed to hear today or tomorrow with results. I'm jumping every time the phone rings. I will post when I hear something further.
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hello123abc1611'
Just thought I would share . I was originally diagnosed in 1996 had lumpectomy and radiation. I was fine until March 2014, I couldn't swallow food would stay in throat until I gagged it up.
After many,many tests they found a lymph node pressing on my esophagus . They went in and stretch it while biopsying . Came out ER pos. So I was immediately put on trial of ibrance and letrozole. I had a hard time with the Ibrance so June 2016 on letrozole only. Scanned in July. NED?
I am having a pet scan Oct.5th to be sure or there could be progression who knows. It's such a roller coaster.
I'm hoping all is negative with you and it's only scar tissue. My best to you, Linda
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Thanks Linda! I'm sitting on pins and needles. I just called the doctor's office and they said they are still waiting for results! Grrrrrr.....I hate, hate waiting!
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I heard from my doctor. News is not too good. I have a new primary cancer in my breast at the same spot as my last cancer 19 years ago. She said it's a new primary rather than a recurrence of the old cancer and has formed since my mammogram in 2015. They have me scheduled for MRI on Friday morning and appointment to meet with surgeon on Friday afternoon. I am looking at mastectomy definitely on at least one breast (maybe both) and then after MRI they will be better able to discuss my course of treatment. I am so sick! I don't want to go through that sh*t again! Here is part of what the pathology report said:
Microscopic description is "invasive carcinoma is present in all three tissue cores with a maximum linear extent of 1.7 cm. The tumor exhibits no lubule formation, moderate nuclear atypia and a low mitolic rate, for a combined Nottingham grade II. No in-situ carcinoma or lymphatic vascular space invasion is identified. Much of the tumor exhibits plasmacytoid morphology, suggestive of pleomorphic lobular carcinoma. An immunohistochemical stain for E-cadherin is negative, supporting this classification.
ER (clone 6F11): Positive (30% weak, with focal "hot spot" that is 80%, intermediate)
PR (clone 16); positive (95% strong)
KI-67 (clong MIB-1): approximately 10%
I apologize for any typos. It's hard to read and type when you're crying! If anyone could help me understand in plain english what the above says, I would appreciate it.
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I'm so sorry you got bad news. Low mitotic rate of 1 is as good as it gets, size is under 2cm and no LVI is good. With ER/PR+ you have many options. I don't know about pleomorphic lobular carcinoma, but I'm sure someone will chime in. Do you have HER2 status yet?
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123ABC, my mom had a new primary earlier this year, which was 24 years after her original diagnosis. Hers was also pleomorphic ILC. After a mastectomy, she's now on Letrozole and doing great. Hoping you will as well.
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If the cancer is not found to be in nodes, and they do a mastectomy, does this usually mean that I probably won't have to go through chemo and radiation again? That's what I'm hoping at this point. The tumor is ER positive so I know that I will have to go back on some kind of estrogen blocker. The radiologist said he didn't detect anything suspicious as far as enlarged lymph nodes from mammogram or ultra sound. When they do the mastectomy, I assume they will remove nodes for testing? Since I had 8 nodes removed in 1997, I don't know if I still have sentinel node. I feel so stupid right now! Also, is MRI usually just of the breast or is it full-body? I'm scheduled for that on Friday.
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Still waiting on HER2 status report.
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The decision for chemo will depend on a few things. If it is HER2 positive, you'll need herceptin, and that is generally given with chemo initially. If you are HER2 negative, your doctors should order the oncotype or mammaprint test which will help to give you your benefit of chemo. Some tumors are more aggressive nad chemo is beneficial. Some are less aggressive and chemo could do more harm than good. These tests help to determine that so that you and your doctor together can make that decision.
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HER2 came back equivocal so now she's waiting for something called a FISH test?
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Mine was that way; it's a different and more specific wsynofvyesting. It took about a week to get results. Mine was FISH negative
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Kbee, what finding should I hope for? HER2 negative or HER2 positive status?
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123abc1611 sorry to hear you are going through this again. HER2- is less aggressive and there is no need for herceptin.
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So, I should hope for negative? Sorry to be so dumb but it's been almost 20 years since my last diagnosis and things have really changed.
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HER2+ is one of aggressive characteristics of breast cancer, but not the only one. BC can be aggressive in many different ways, so not having HER2 overexpression is one less unfavourable factor. Although there are now excellent targeted therapies available for HER2+ with great long-term response for both lower stage and MBC.
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if you're still wondering about the MRI - I've had 2 breast MRIs. They're of the breast, but it was the same regular MRI machine (different attachment I guess) so you can't really tell. You lie on your stomach with your breasts fitted into an opening area. I didn't have any issues with the MRI but I know its stressful for some people so if you're concerned about that or could just use a break from that added to stress overload ask your doctor for a prescription. Take care
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Hi All! Still waiting for results of FISH test to determine my HER2 status. Praying for negative.
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Hoping it is negative; it is frustrating that it takes so long. I do know that they recently changed the guidelines so some cancers that used to be considered negative are now deemed positive. It allows those folks access to Herceptin which may help long term. Keep us posted. Sorry you have to wait so long.
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At this point I just want an answer one way or the other. They have me tentatively scheduled for surgery 1 week from today unless it comes back positive in which event I will get the chemo and herceptin (or whatever they decide) prior to the surgery.
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