Hello everyone. I am new here to this forum, although I've read many topics here and found the support coming from others for others as comforting - you know you're not alone that's for sure.
I'm 35 (will be 36 in Feb), married to a very adoring husband and have 3 beautiful children. Here's what I've been going through the past few months. I am so scared of a cancer diagnosis that I even find myself refusing to make any plans for the future (including finding a new job - even my search for that has been put on hold). I am truly an emotional wreck - but try to hide it best I can from hubby and the kids.
Initially I was diagnosed with HGSIL on pap in May and was referring to an OB/GYN for a colposcopy and biopsy which was performed in July. At that time, the dr informed me that he would be doing the LEEP, but to wait for his call after the pathology report came back. 2 weeks later he called and I went in to set up the LEEP date. What I find as troubling is that he did NOT tell me how severe the dysplasia was - other than the pap was confirmed, that they did find abnormal cells, that it was a rather large lesion, and that if not treated it would turn to cancer in 2-3 years.
Last week I went in for my LEEP procedure as an outpatient in hospital under general anesthetic (as the OB/GYN said that he had to remove a rather large lesion therefore it might have been uncomfortable for me doing it in the office). I was done very quickly - was put under for a total of like 20 minutes maximum. Now 1 week post-LEEP I am having to deal with all the wonderful nasties associated with the healing process lol.
Now the hard part starts all over again: waiting and worrying myself sick about the pathology report - whether it will come back as cancer and wondering if he did in fact get it all. I don't go for a follow-up appointment until November 16th. The OB/GYN told me prior to the LEEP that this should be all that I will require - that during colposcopy and biopsy he did not see any cancer present and that it wasn't that bad. He said that I would be okay and he felt that he would be able to get it all. But - and this is why I get so freaked out - he seems to contradict himself (at least in my eyes he is) by saying that it was a relatively large lesion and that if not treated it would be cancer in 2-3 years. How can he be so sure of himself - especially in saying he didn't see cancer during colposcopy? Why then do they send the LEEP biopsy to be further tested for cancer? Doesn't make sense to me.
I am sooooooo scared that the pathology will come back bad. Everyone in my family keeps telling me that I will be fine, to stay positive, and that I don't have cancer (because their reasoning is that I am in good health lol). But that;s so easy for them to say - they're not the ones having to face the fact that they could possibly have cancer.
Does anyone know what the chances are of HGSIL coming back as cancer after a LEEP? Has this happened to anyone? And truly, what is the success rate of the LEEP procedure in removing all the abnormal tissue? If it is truly successful, then wouldn't the LEEP take out any cancer that would have been there at the time? What are my chances of having cancer after the LEEP?
Any stories, support and advice would be warmly welcomed and appreciated. I feel so lost and alone at the moment - and absolutely terrified. I don't want to have to go through any more invasive procedures, but yet I don't want to die of this and leave my family behind.
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Had LEEP now need hysterectomy?
- By CowgirlCaz
- Posted September 24, 2009 at 12:46 pm · 13 replies
- In Finding emotional support
- Shared with the public
- Edited October 20, 2009 at 9:39 am
Explore topics in this discussion:
Cancer Surgery Hysterectomy Leukemia Genital warts HPV Cervical cancer
13 replies
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- By CowgirlCaz
- Posted September 24, 2009 at 12:49 pm
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I don't know whether this would mean anything or not, but figured I would add this bit of info:
During the colposcopy, the OB/GYN took only 1 biopsy - one little "punch." Like I say I don't know if this would tell anyone anything but I guess it's worth mentioning regardless.
- By sandybeach054
- Posted September 24, 2009 at 1:26 pm
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Hi. I don't understand why you have to wait until November for the results. That is crazy! I had a leep done in May for CIN111. Got a call the following week with the results. The results were that I needed to have a cone biospy done, that on one side the margins were not clear. That was scheduled for 3 weeks later. I had that done and follow up appt in 2 weeks. Everything was clear at that point. And she told me that really everything was clear after the leep but they were not sure!!! Next week I go back for my first pap since this all happened and I am nervous. I have been worrying about this since I got the first call that my pap was abnormal. But waiting for the results until November no one should have to go through. I would call the doctor's office and ask why you have to wait so long!!
- By ksmetx
- Posted September 24, 2009 at 2:21 pm
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The leep is a procedure to remove the cells. A check up in nov is accurate. I had a cone biopsy with my leep procedure to remove my severe dysplasia. I have adenocarcinoma in situ. Planning my hysterectomy for Jan. Good luck!
- By flowershoplady
- Posted September 24, 2009 at 6:03 pm
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if you're in the u.s., you should be able to get the pathology results from your leep within 2 to 3 business days following the leep. there's no need for you to be anxious from not knowing the results until november! just call your doctor's office and tell them you want to know the results. it's that easy. :)
- By flowershoplady
- Posted September 24, 2009 at 6:03 pm
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if you're in the u.s., you should be able to get the pathology results from your leep within 2 to 3 business days following the leep. there's no need for you to be anxious from not knowing the results until november! just call your doctor's office and tell them you want to know the results. it's that easy. :)
- By sparkles1234
- Posted September 24, 2009 at 6:23 pm
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What my GYN told me was they do the LEEP just to make sure that there isn't anything abnormal further down into the layers of your skin cells. So if the part they removed during the LEEP comes back with clear margins, this means they have gotten the abnormal cells.
Hmm, I think I will need to call for my results as well. They didn't tell me when I'd find out and I forgot to ask. I have no follow-up appointment and was told to schedule a repeat pap in 4-6 months.
- By CowgirlCaz
- Posted October 14, 2009 at 11:15 am
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Well, I received a call from the doctor's office about 2 weeks ago (I would have posted earlier lol - sorry - but have had computer issues argh!!!). I originally had a follow-up appointment scheduled for mid-November, but they wanted to move it up to October 19th in order to discuss the results of the leep biopsy. Because the nurse knows how frantic I have been about all of this, she tried to reassure me that she did NOT see any mention of any cervical cancer anywhere in the report (she said that she knew pretty much all the medical terms that could be used to indicate cancer ... she did not see any mention of any of those terms).
HOWEVER, what I find as unnerving is that she didn't understand what the report was actually saying, and nowhere in the report did it mention whether the biopsy had clear margins or not (as I did ask her). She agreed with me in saying that it is rather odd that they didn't mention anything about the margins.
So needless to say I am still absolutely petrified of what the doctor is going to say on Monday. If the nurse can understand the terminology used for cancers, and has seen many leeps performed, etc., why can't she understand what the report says, and why doesn't the report mention the margins?
I am so scared. Has anyone else had a leep biopsy report come back not even mentioning the margins? I don't know what to think anymore.
As a sidenote, I am now 4 weeks post-leep today - just had my period and I seem to be okay. Still slight bleeding but nothing else to report.
Like I say - just don't know what to think of this biopsy report! So scared of what it is saying or not saying.
P.S>.flowershoplady - I live in Canada - it takes approximately 10-14 days for the results to get back. And what I don't like is that here, we don't have the priviledge of accessing our medical records - at least not without legal support.
- By simplynat
- Posted October 14, 2009 at 11:43 am
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Hi Cowgirl, I live in Canada as well and you should be able to obtain copies of your medical records. They are your records and you do have access to them. Likely you will need to go in and obtain them (possibly with ID) as they probably will not agree to fax or email them due to the privacy act. I have often called my doctors office for results or a copy of a result and have been able to get them.
- By corellin
- Posted October 14, 2009 at 12:09 pm
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cowgirlcaz -- My first reaction is -- "your doctor is an idiot." There's no way he can tell you the lesion would have progressed to cancer in 2-3 years. He just doesn't know that from looking at it. And, he's an OBGYN not a GYN oncologist, so this isn't even his specialty. A lot of doctors can't even tell the difference between skin tags and genital warts.
Truly -- get a copy of your medical records so you can see the specific diagnosis from the pathologist -- including the biopsy result from the colposcopy as well as the pathology report from the LEEP. And then, even if you don't understand it at first, you can ask lots of questions until you do.
Hopefully, all the dysplasia will have been removed by the LEEP. A negative HPV test 6-12 months following the procedure along with a normal pap is a good indication that there's no residual disease.
I'm so sorry about your doctor's bedside manner -- which is not good -- in that he's scaring you without giving you the facts that you need to participate in decision making. He's telling you what you need to do without giving you information or options. That's not good! You need to be fully informed and part of the decision making process. When we don't have information, we get scared. And we should be scared, because how can we understand what's happening or what we need to do without information.
- By CowgirlCaz
- Posted October 20, 2009 at 9:48 am
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Thank you everyone for your support and suggestions. I came from the doctor yesterday with not very good news.
Now he says that the pathology report from the leep show microinvasive cancer, about 1mm, and I now need hysterectomy - which is now scheduled for December 16. Talk about making me feel like the walking dead ....
I think I will be calling to ask further questions because I don't understand how he or the pathologists would know how deep this is just from a leep - they say 1mm but with the luck that I am having it will end up being worse. And why no chemo or radiation or further testing or seeing an oncologist?
What I don't get is if the microinvasion is 1mm ... why didn't it get out with the leep?
Everywhere I read it says that microinvasive is cancer .. yet the doc is suggesting that it isn't full blown cancer .. that it is just starting.
I don't know what to say think or do at this point. I will be calling to ask some questions though, and will keep you guys updated. I may even go to my regular family doc for a second referral.
- By jody0402
- Posted October 23, 2009 at 6:11 pm
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You are mistaken about your ability to access your medical records. At any point you can always request your medical records. Some places charge a fee to copy everything for you. All you have to do is ask. I work in health care and have requested my medical records before and had to go to a central records building and pay something like $65. That's it. As a Canadian citizen you are allowed and have the right to ask for anything to do with your health care.
- By jody0402
- Posted October 23, 2009 at 6:22 pm
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When they did your LEEP they cut out deeper than 1mm. 1 mm is one tenth of a cm. They were probably able to measure the 1mm lesion from the chunk of cervix taken out. The top of the cervix inward probably measured cancer 1mm deep from the surface. The cells past this 1 mm were probably fine. You do have cancer and first step in any type of cancer is surgery. Chemo and radiation are done for places that are difficult to operate on such as leukemia etc and you will only have chemo or radiation if the doctor feels as though he couldnt get all the cancer out or as a precautionary measure to make sure the cancer is dead after surgery. Like I said, surgery is the first step to treating cancer....chemo and radiation will come after if the doctor sees fit. I wish you the best. I had my first diagnosis of low-grade squamous intraepithelial lesions last year in Sept. I had a follow up pap in April to see if they had goone away on their own which they did not so I then went for a colposcopy 2nd week of Sept. this year. My results came in and I found out last week that the colposcopy results showed moderate to severe high grade squamous intraepithelial lesions. They scheduled me for surgery under general anaethesia in two weeks. I am having a LEEP Cone Biopsy. I am nervous like you were and obsess about my health. I hope my results turn out well too but I am preparing for the worst also. What I don't get is that the MD told me mine is related to HPV but he is not taking into consideration that both my maternal grandmother and my mother have both has complete hysterectomies. My grandma was 35 and my mom just had one at 45 last month. I am thinking that maybe it is inherited and told him to just do the hysterectomy on me now. I am not wanting more children as I am 29 and am done. Like I said, good luck and everything will turn out fine. They found it in its early stage so you will be great once they operate.
- By simplynat
- Posted October 23, 2009 at 6:30 pm
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Hi Jody, I don't mean to hijack cowgirlz thread here but I wanted to address your question as to how the doctor knew it was related to HPV when other women in your family have required hysterectomies.
You may not be aware of this but cervical cancer is almost always caused by HPV (99.8%). It is very rare types of cervical cancers that aren't caused by HPV (neuroendocrine, etc).
Squamous cell is always caused by HPV, which is why the doctor told you this. LSIL and HSIL are all squamous dysplasias. Canada doesn't always test for HPV (the medical system isn't yet aware or accepting to all of the benefits this has) so usually it isn't even mentioned or if it is, it is glossed over. (not something I agree with). Many women speak of the cervical cancer and/or dysplasia running in their family or being inherited but the 'link' between women of the same family sharing cervical disease is their inability to clear the active HPV infection. The virus, while extremely common, is often cleared by most people without any ill effects but for some of us the virus remains active for a lengthy period resulting in dysplasia or sometimes cancer if it progresses.
Anyhow, best wishes to you. I just wanted to clear that up.
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