Is it possible to be told you don’t have cancer without a biopsy?
The gynecologist oncologist that I saw today told me that I do not have cancer. My regular gyno could not get a good sample with an EMB so he had referred me to this GO, thinking he could do a frozen section D&C. But instead, he told me flat out that I do not have cancer and that bleeding is most of the time not cancer. I’m post menopausal. He is aware of the fibroids and just went didn’t into discussing a hysterectomy. Should I be concerned?
Comments
-
I was only 49 and not pre-menopausal when I was dx. I was on the pill and had bleeding in between and my gyn said, "Let's find out what is going on". When she couldn't do the biopsy in the office she scheduled a D&C. That is where they found a polyp - and the rest is history (both 'typical garden variety' and the aggressive USPC).
I don't know how that gyn onc knows without any evidence -did I miss something?? I realize the bleeding might not be anything, but it could. Typically gyn onc's only deal with you when there is cancer because there are so few of them.
If you want an answer than maybe your gyn can do the D&C?
1 -
How very confusing! Did they, initially, do an ultrasound? On me, they did a pap, too. How thick was the lining?
At 16.2 mm (vs. normal to 4 mm) and with supposedly tell-tale vascular bleeding, also, personally, I’d want definitive testing..Everything I read said tell-tale bleeding should never be ignored. Only, I’m banking on my MRI — diagnostic when a biopsy fails, due to cervical stenosis — to, possibly, help me to know/decide? Here’s where I learned about it: https://cancerimagingjournal.biomedcentral.com/articles/10.1186/s40644-016-0069-1
OB/GYN’d said the biopsy, hitting just one spot, could miss it, where the D&C, getting everything, wouldn’t. It’s about 90% accurate, as they slice it all up, and look at all of it?The term ‘frozen’ is new to me, though. Is that because that’s what’s needed/done for the slides? Only, is that done while waiting — for further surgery — or reported later, anticipating a GYN/ONC if needed?
Did he reason how he could say that w/o any factual ‘evidence’?
0 -
So an ultrasound was done by my regular gynecologist. He said there were lots of small fibroids, my lining is 5.5 mm. He said he didn’t see anything that looked odd to him, but the biopsy should confirm. When he called to say the sample was just blood, he said he was referring me to an oncologist because he thinks I should have a frozen section D&C. But he really wanted the oncologist to be the one to determine what should be done next. He reiterated that he doesn’t think I have cancer.
The oncologist told me that the pathology report from the regular gynecologist was blurry/fuzzy, can I tell him what I know. He said that he doesn’t think I have cancer, and he recommends a hysterectomy. Said his scheduler would be calling in a couple of days. His main concern was stopping the bleeding. He did a quick exam to feel everything. I’m wondering if he will end up sending off for a biopsy and he just didn’t tell me. I told him I am good with having a hysterectomy. I don’t want to have to deal with bleeding anymore. He explained the procedure, but no mention of the biopsy and I didn’t think to ask until I left there.
0 -
Sounds like he and you have decided on a hysterectomy? And both docs don’t think it’s EC? It’s fibroids? A hysterectomy is a big deal. Decades ago, I had both tubes and one ovary removed, but kept the uterus, as I was in my 30’s. Even now, I’d prefer a D&C if that’s all that was needed, vs. the more major operation.
I know little about dealing with fibroids, while two ultrasounds over decades showed a calcified few. Both a friend and a niece have had them, and the niece, especially, dealt, like you, with bleeding and severe cramps. Have you searched this site for how others have dealt with fibroids? My friend had them dried, and they shrunk to smithereens. If it’d help, I could ask both, ultimately, what they did with them.
Without the thickened lining that’s the typical warning for EC (or hyperplasia), it does sound like you were sent to the GYN/ONC simply for the D&C — where the OB/GYN, as with me failed. But why? That's a bit surprising? Did he say why, considering he didn’t think it was EC? Seems, as with mine, he (the OB/GYN), too, could do the D&C.
Not sure though what the goal is with a D&C for fibroids? With the uterus scraped clean, won’t they grow back? But it’s my understanding fibroids grow outside the uterus, too. So, taking only the uterus might not get them all? Seems there might be more to learn? He’s what a quick search found:
0 -
Hi Therese,
Before my endometrial biopsy I had an ultrasound which found a lesion that the radiologist described as a "probable fibroid." My gyn-onc went into the surgery thinking in addition to the endometrial cancer found on the biopsy, he would be dealing with the large (4.1 cm) fibroid during my hysterectomy. Turns out that the lesion was not a fibroid at all, but the major site of my cancer. The ultrasound measured my endometrial stripe as approximately 7.3 mm.
While the gyn-onc you saw may very well be correct, I'm not comfortable with his statement that, "bleeding is most of the time not cancer. " I would want to ask, "what about the rest of the time?" If you're going forward with a hysterectomy by this gyn-onc, it probably doesn't matter, as he will deal with whatever he finds when he performs the surgery. Were you comfortable with and do you have complete confidence in the gyn-onc you saw? I got two gyn-onc opinions before my surgery, even though I really liked the first gyn-onc and he had many years experience. He was also highly-regarded by the community and other medical professionals who knew and worked with him. My second opinion gyn-onc confirmed that he completely agreed with what the first gyn-onc had told me.
Wishing you all the best.
MoeKay
1 -
Therese,
I agree with MoeKay, IF you otherwise liked the gyn/onc, and IF he is going to do the hysterectomy, then OK, he'll get to the problem and perform all the inspections and sampling of sentinel lymph nodes, etc. They'd probably do a frozen section of "parts" as they go, looking for cancer. But it also is perfectly OK to get a second opinion to boost your confidence and perhaps meet someone who you feel more comfortable with. If it is cancer, the gyn/onc that does the surgery will be your treating specialist so it makes sense to choose intentionally going in.
Best wishes, Oldbeauty
0 -
PS. If it’s helpful, both my niece and old friend, ultimately — after trying other interim things — had hysterectomies. My niece said her fibroids were of two differing types. I do think my friend had had her fibroids shrunk first, though, to make the surgery more successful and easier… I know from an decades-old earlier OB surgery of my own, they can grow on stalks from the exterior uterous into the abdomibal cavity.
1 -
Thanks for the information on your niece and friend. I did ask the oncologist about doing MRI guided surgery and ablation as an alternative to hysterectomy. He said because my fibroids were small, it would be difficult to do and they might come back anyway. He said I could find drugs that could help with bleeding, but since I’m post menopause, a hysterectomy would mean not ever having to deal with fibroids again. I’ve decided to go through with it. And wouldn’t you know that the bleeding has pretty much stopped just as I’m about to schedule the surgery. It does make me second guess the surgery, but I think I’m just going to do it. I have heard so many women post menopause that are happy they did it.
1 -
That recurrence happened after chemo, and while I was on an aromatase inhibitor. Both should have prevented it from popping up. The radiologist treated it with brachytherapy through my stomach muscle and thru the tumor. Not a fun experience, but it is completely gone. That happened 2017. I was put on a cdk 4/6 inhibitor (Ibrance) after that which worked for a long time.
0 -
Hi Therese,
I was dx in 2018. I had only two tiny pink spottings, two weeks apart. My gyne, said the same as yours. Nothing to worry about, most likely not cancer, and if it is, it will most likely be the good kind, easy to cure. No worries! Easy peasy!
Boy was he ever wrong. I had hysteroscopy, which showed many large fibroids, but also USPC and clear cell, which ended up thankfully stage 1a. His cavalier attitude devastated me as I was not expecting anything, much less an aggressive cancer. They cannot diagnose by looking! He did not prepare me at all for what was to come. I had the hysterectomy, BSO, robotic, followed by chemo, and brachy. I did not recur, thankfully, its been almost 7 years to the day.
It sounds like you are in good hands now with your GO. Good luck to you.
xxoo
Denise
0 -
A hysterectomy is major surgery no matter how it is performed, but there is a huge difference in recovery depending on how it was performed. I had a DaVinci robotic hysterectomy and was eating lunch at a neighborhood cafe the next day. What little pain I had was more than taken care of my alternating advil and tylenol, on the recommendation of my surgeon who was also my gyn/onc. The only inconvenience was remembering not to lift anything over a few pounds for several weeks. If I had not been post-menopausal, I don't know what I would have decided, as it's a decision that depends so much on one's personal circumstances. I wish I'd had it a few years earlier before UPSC developed.
Good luck with whatever you decide.
0 -
An update… illustrating the importance of getting that biopsy? Without one, indeed, there’s quite the scare...
Had my D&C, finally, today. A l-o-n-g wait (to me) from the late January clots and sudden bleeding. I had a pre-op about two weeks back, where I was surprised to have my OB/GYN clarify that IF it (the thickening) WAS the endometrium, then it’s “pre-cancerous”. Period. Not my to-date misguided instruction of “If this or that, then…” As he rightly stated, “That’s why you were referred to me.”
So, rather than the D&C clearing it all out and then, possibly, going thru new talks of progesterone (administered thru an IUD?) or losing weight (less estrogen?), etc., a hysterectomy WOULD still need to be performed. Gosh! For sure, then, another surgery. The surprising thing there, to me, though, was that he said HE’D perform it. All I could think of, at that point, was the wise contributors here, emphasizing with cancer all work should be done by a skilled onc/gyn surgeon.
He then went on to talk about another recent patient, whom he said was astounded to hear she was fine — and in the clear! She’d had polyps. Once removed — and diagnosed clear — that was it! And so, if that were MY case, he said, I’d be in the clear, as well. Surprised, confused and apprehensive, of course, I left that consultation praying for polyps.
But what of the 16.x mm endometrial lining from the ultrasound and the MRI confirming as much? It was explained polyps are tissue, squished flat, and the testing can’t differentiate between the two — endometrial lining or even a polyp. And, as I’ve heard mentioned here, dare I assume the same might be said of fibroids? So, instead of the question is the lining cancerous or not, the first question — and what is to be biopsied — seems to be IS it “the lining” or, instead, “a fibroid”. Seemingly, this causes confusion, unnecessarily? Always curious, here’s what AI says about FALSE ALARMS to Uterine Cancer:
So, what of my results? It’s a polyp. A big one. He proudly flashed a negative-like page of photo strips emphasizing a small two images, where two, seemingly large, vessels were feeding it. Stunned and relieved seem inadequate terms to frame my state the moment. Wow…. It WAS what he’d told me he suspected, too — in my case? But mystery on mystery: what made him suspect? Even he, hinself, remarked: “I’m getting good at this.” Maybe I can learn more at the post-op soon coming meeting.The tissue went to pathology — to be sure — while typically benign. And interestingly, his report operative also noted “scant post-polypectomy curettage,” having it seem very little of the endometrium was left to be involved or removed?
And so, more waiting. But vastly more uplifting and hopeful waiting — leaving both physical energy and psychological room to deal with a new, at-the-same-time, prognoses of HFpEJ (Heart Failure with Preserved Ejection Fraction) — following a January 3-day hospitalization and full cardiac workup saying “there’s nothing wrong with your heart” — and a Sleep Study saying CPAP, perhaps, should have been scripted near a decade ago, instead of ongoing nocturnal oxygen? (Seems a right heart cath is not ordinarily ordered, which, besides pulmonary hypertension [high b/p in the vessels to the lungs] found my elevated wedge pressure?)
“Old age isn’t for the weak”, and “God doesn’t give us more than we can handle” are popular adaptive adages. But feeling blessed to live in an era realizing, where not all that many decades ago, I’d not have had the medications needed to even survive asthma, I’m so very grateful for the many opportunities life gives us to live, nowadays, thanks to fast-advancing but still imperfect medical science.
Biopsies are IMPORTANT! They're THE “Definitive Test.” Even when having them delayed or stymied, due to — in my case — cervical stenosis.
Hoping this is helpful…
Linda
0 -
Congratulations on the happy news! Should you ever have another health scare, I think it would be safer for you to look for information from specific medicine/health sites like the Mayo Clinic, the Cleveland Clinic, etc. rather than take what AI turns up as accurate. Despite all the amazing things that Ai can do, it also has been shown to turn up all kinds of inaccurate health and medical information. Just a couple of weeks ago, HHS published a report that was generated, at least in part, using AI, and it was full of inaccurate information, including completely made up research studies.
1 -
Well, it’s not over yet. The bleeding that had stopped fairly early on started again with gushes, having me call in. Seems the needed thinner might be the cause? Hard to understand how or why if everything’s scraped clean? But he had the pathology back, too…
“Atypical endometrial hyperplasia (endometroid intraepithelial neoplasia EIN; complex hyperplasia with atypia) with focal features suspicious for well-differentiated endometroid adenocarcinoma involving fragments of polyp” — for the polyp.
“Scant fragments of endometrial polyp; and scant superficial strips of inactive endometrium” — for the scant endometrial lining left to remove after the polyp.
Wow. Seems in Maine, there’s just the one OB/CANCER center in Portland. With difficulties, no sense to even thinking of traveling further. He says it looks clear, as was wholly contained? However, “pre-“ anything’s protocol is seeing a specialist? Looks like I might have to get to Portland, somehow, unless a Zoom appt., as during COVID is adequate?
Yikes. I’d read some post-nenopause polyps came back cancerous. Seems it’s not all over yet!
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 122.4K Cancer specific
- 2.8K Anal Cancer
- 452 Bladder Cancer
- 310 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 402 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 679 Leukemia
- 799 Liver Cancer
- 4.2K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 240 Multiple Myeloma
- 7.2K Ovarian Cancer
- 68 Pancreatic Cancer
- 493 Peritoneal Cancer
- 5.6K Prostate Cancer
- 1.2K Rare and Other Cancers
- 544 Sarcoma
- 742 Skin Cancer
- 659 Stomach Cancer
- 192 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards