Why such a rush for a non invasive cancer?
Hi there. I have just been diagnosed with DCIS level 3. I don't have all my results yet but this is the findings from the core biopsy I have had done. I am seeing the surgeon on Monday where I am sure all the pieces of the puzzle will fall into place a bit more than now. From the time of my initial mammogram to now has only been 3 weeks! I had a follow up mammogram, where they could see a little trail of calcifications, then the biopsy only last week. I have since been sent for a CT scan and an ultrasound of both breasts. So far only in the left. Funny thing is I could feel tenderness in what turned out to be the exact spot for years, but it's gone now after the biopsy.
My question is, although I have read everywhere that this is non invasive, why am I getting the feeling from my GP that this is serious? hence the great rush? I am a very positive an upbeat person and a lot of people think I am in denial. I don't think I am, just a realistic and I like dealing with facts, but the speed of all this is startling me a bit. Should I be more worried than I am? Apparently it is only 4mm but level 3. I have very big dense breasts and have read that that can also cause a reoccurance down the track. Anyway, I have found this site invaluable for answering a lot of my questions. Just goes to show, that where ever we are in the world, women face the same problems all over. It's nice that others are in the same boat (well unfortunate actually) but great that this site is here to air our problems and get some valued answers. All the best to everyone here. Kate
Comments
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I found a lump, went to GP, had mammo, ultrasound, Biopsy, results June9th 2011, surgeon app June16th, Surgery June 22nd, started chemo August 4th and just finished yesterday..... The rush is because BC is nothing to mess with..... they want it OUT and dealt with NOW before it gets worse, In a 1 cm tumor there are 1 BILLION cancer cells!!!!!!!!!!!!!!!!!!!!!! and it goes up from there.... and yes with out treatment of any kind there is a chance for reoccurance.......... Please follow all your options, and get as much info as you can!!!!
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When I was diagnosed, it was also dizzyingly fast. Within just over one week of my mammogram I had biopsy results and had met with a surgeon, oncologist, genetic counselor, etc. and was scheduled for an MRI. However, once the initial flurry was over, I was told I had time to make decisions and needn't rush into surgery. It took nearly a full month to schedule surgery following diagnosis.
I imagine there were a few things at work: I had a great medical facility who prided themselves on efficiency, the doctors knew that uncertainty and waiting are very difficult and wanted to get me all my answers quickly for my own piece of mind, and possibly they wanted to make sure as soon as possible that they weren't dealing with something more serious.
You're right that the rush is perhaps not necessary. But I would take this as a sign that you have responsive and excellent doctors. Many women have come here with a DCIS diagnosis (or worse) and had much longer and frustrating waits.
And in the end, the sooner you are done with surgery, the easier it will be on you stress-wise.
Sorry to here about your diagnosis, and glad you found us.
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Kate, DCIS is non-invasivie and for that reason you have a little time before rushing into surgery. Before going into surgery do your homework. Research the pro's and con's ... and side effects to all treatments. The only change I would had made knowing what I know now is to do a mx at the second dx. If you don't want to do treatments then perhaps the best route to go is a mx. Make sure whatever happens it's your decision.
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I had DCIS but in the mamogram, one microcalcification had poked out of the wall of the duct. That made the diagnosis DCIS with IDC. Stage 1, grade 3, comedo, which is the fast growing grade. I think time matters.
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I think the issue is as Stage1, above, implied, but I'll re-state it.
Your biopsy showed pure DCIS, but an aggressive form. If that's all it is, no biggie. However, you won't have a final diagnosis until you get the pathology from the surgery. It's very likely the pathology won't change, but in a few cases (like Stage1 said) it turns out that there was some invasive cancer which wasn't seen in the biopsy.
When you have grade 3, the likelihood of there being some hidden invasive cancer is greater than if your biopsy showed grade 1 or 2.
I do agree with you that there's no reason for you to rush off to the hospital in an ambulance, but I also understand your doctor's caution. The reason the doc is concerned is because of the grade 3 and because s/he can't be absolutely certain that the tumor has no invasive component.
Hope that helps.
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It is the grade 3 that makes it a more aggressive DCIS. You do have a little time to make the plan of attack but since it is the most aggressive grade of DCIS you do have the risk of it having some invasive component. Good luck in making your decisions.
Sheila
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Yes, DCIS by definition is non-invasive, contained within the ducts. However, with a biopsy, you cannot be sure that all the tissue was removed, so your docs don't know if there is something more in the breast until more definitive surgery (lumpectomy or MX) with good margins is completed and that specimen is fully analyzed. In approximately 10-20% of cases the final pathology reveals an invasive component. The risk for something invasive being found is higher for those with Gr 3, comedonecrosis, or multicentric disease. Even so, in general you have time to research and learn about your diagnosis and treatment options, so don't jump to the other side and freak out. Take your time to become informed, but don't blow it off as if it is nothing. Hope this helps!
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Things move fast because even if your biopsy shows ADH not DCIS, they want to get it out of you. And I think that's best. In your case they know the grade from the biopsy, so they'll want to treat you surgically as soon as possible before it moves into anything else. All good. My time line was mammogram that found the calcifications April 2011, biopsy June, lumpectomy August. In my case I was put to the back of the line because biopsy showed ADH, but it was still rather quickly dealt with.
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Oh, I WISH things were moving more quickly! I was dx on 9/15 with DCIS, Grade II, but later they found small areas of IDC.
I was scheduled for BMX on 10/31, but had to reschedule for 11/8 because of BS and PS coordination.
I got sick with the flu, and had to cancel 11/8 and reschedule for 12/5!!!! Yikes - I know it's a "slow growing" cancer, but I want it out. Now. And yes, it's true - they won't really know what's in there until the BMX.
Believe me, once I had made the decision as to which surgery to have, I was ready to go.
Wishing you the best!
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Hi Katie, I am sorry you are joining us on th BC journey.ibetween the emotional rollercoaster and physical changres and edurances, BC is very challenging. How fortunate you are that they are moving through the medical process so quickly Waiting in the unknown and for treatments can cause a lot of stress. Here in Canada things take forever. It's been over 3 months since my initial mammo Aug. 15. Biopsy Oct. 4 - Diagnosis: high nuclear grade (3) DCIS comedonecrosis. - poor differentiation, Er-/Pro. I will have my first appt. with BS Nov. 24. I don't expect I'll have surgery 'til the New Year. That would make it almost 5 months. I was told that the type of cancer I have is highly aggressive but as it is non-invasive DCIS. I've got a fairbit of time
I think your doctors are being proactive and responsible..
Kate, I agree this a good site to connect with others who understand what we're going through. Great spot for support. And info.
Take care ofyou. Wishing you good health.
Wishing you good health. -
I also had DCIS grade 3 over 6+ cm in large dense breasts. The mammogram showed calcification in the left breast with very little in the right breast. From diagnosis to my surgery on 11/14/11, there was less than 6 weeks in between. My BS said we could put it off for a short while but I am very practical and wanted it out so I can start recovery. I have elected a bilateral mastectomy with TE. I do not regret my decision for any of it and I am on the road to recovery! Good luck and talk with your surgeon about their reason as to why the rush.
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Unfortunately until the surgery is done and the final pathology is in, there is no saying it is "just non-invasive". I've only been here since April but I have seen more then a few posts by women who thought they only had DCIS, only to find out that it was in their nodes, or a small section of IDC was found during the final pathology. Plus as was stated, you have an aggressive form of DCIS, at which point the doctors are not going "will it turn into an invasive" but more "when will it turn invasive".
The thing is you rush rush rush rush, from one appointment to another and, I hope you are getting a 2nd if not a 3rd opinion in here so that is more rushing, and it is all to find out more information. I always say take someone with you. My husband I always compared notes after the meetings and it was amazing to me what we each heard differently. But once you have all the information, since it is non-invasive, more then likely, you can take a deep breath, and make that decision. Part of my rush rush rushing was an MRI, which confirmed that they suspected it was only DCIS, so I felt comfortable waiting until May for my uni-MX. However my doctor was very clear on you don't know until the final pathology report is in.
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AussieKate, you remind me of myself. I am typically level-headed and positive as well. I had a doctor tell my husband that I am in denial (because I didn't rush onto the operating table). They have to try and protect themselves from lawsuits, as well as their patients, so I understand their urgency. I have to say I did panic somewhat when I was first diagnosed with IDC. Two years into it and over the initial fear, my advice to someone first diagnosed, especially with stage 0 or 1, is NOT to rush into things. I am so glad that I did not rush, as my doctors wanted. I would have made decisions based on my fear and not based on facts, decisions I would have regretted. Do your homework then make an educated decision on how to move forward. Of course dont ignore DCIS. Regardless of whether it's invasive, it is your body's way of telling you there is something wrong and you need to make changes. Best of luck to you!
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I was dx end of Feb, 2007 and had a lumpectomy 26 March. I felt rushed too. I remember the breast dr saying that "it's ok to wait a few weeks but not a few months to get this out of your body". About 3 weeks after the lumpectomy, I had a mastectomy due to the large area of DCIS - over 6 cms. While waiting for the final path results I was warned that I may need rads and/or chemo. Some very small microinvasions were found but no chemo or rads was needed.
I was definitely in denial for a while but the path report on the lumpectomy made me more focussed.
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UPdate. Well I just spent 2 hours with the surgeon. Turns out it isn't just DCIS it is invasive. Am scheduled for all the works on 9th December. I will then do radiation therapy and depending on the lymphy gland biopsy's then will know if chemo is needed. He said it was going to be like getting onto a bus, only I don't know where it is going... very early days indeed. Not even a month since my first mamogram!! and now this. Plus side is (if there is one) is that I am going to have breast reduction based on the fact that large breasts have additional problems being radiated - so yeah! going from an E cup down to a C or D - lucky me!!!!
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Kate - I'm a DD cup and had no problems with radiation - never heard that comment before. Where in Oz are you?
Sue
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He said it was going to be like getting onto a bus, only I don't know where it is going... very early days indeed.
AussieKate - In my mind, I am tweaking your doctor's analogy - it is more like mapquest or google directions - you will be given choices to get to your destination - NED No Evidence of Disease.
At this point you don't know which route you will be taking - when all the facts are in (your point A) your route choices will have some trips shorter than others, but they are all to the same destination and you are the driver of that bus.Good luck,
Julie E
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Aussiekate - so sorry to hear it is more involved than DCIS. This cancer roller coaster ride is full of surprises. Just when you think you know what's going on, you find out something else new, it seems. Two hours with your surgeon? That is so great that you got to spend so much time with him - sounds like you are in good hands.
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Sorry to hear the cancer was invasive. Good luck on the reduction! I had a uni-MX on my left and my right was reduced/lifted and I LOVE it
It is awesome.
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