Post op visit with Rad Oncologist, with surprising information

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LdyJane
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Date Joined Jun 2008
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   Posted 6/24/2009 7:07 PM (GMT -7)   
Hi. I had the lumpectomy last Friday; the biopsy in May showed a small area of DCIS, 6 mm; the final path from Fridays procedure measured 3.2 cm! We just got home from a sort of discouraging Dr. appt. We met with the Radiation Oncologist; he was wonderful, he said they were all taken by surprise by the size of this thing and were in no way prepared for that finding, nor the finding of a second site.

Because of the size of the mass, I do not qualify for the 5 day mammosite radiation, but instead have to do the 6 week stuff.

The final path shows that it is fast growing, fairly aggressive and has a high likelihood for recurrence, hence the need for a different type of radiation. My Van Nuys is 7.1; the margins aren't as clear as they would like and tomorrow my surgeon, the RO and the pathologist are meeting, reviewing the slides and determining if they have to do more surgery. The RO has brought up the idea of mastectomy.

I'll know about the surgery tomorrow, this really wasn't the news we had hoped for, but it could be worse; they did not find any place where the cancer was invasive, but because of discovery of the second site and the size of the mass, they may have to go back in.

How does a mammogram show just a small bit of microcalcifications, but the the lumpectomy come up with 3.2 cm? I think everyone has the same thought too, if the mammo missed something of this size, what else is it missing?
Janice

Post Edited (LdyJane) : 6/24/2009 8:10:39 PM (GMT-6)


barkyboys
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Date Joined Jul 2003
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   Posted 6/24/2009 7:35 PM (GMT -7)   
It really isn't surprising to hear that the mammogram wasn't right. I got a letter saying that my mammogram was normal and showed no evidence of cancer...that was the day after I had biopsies that showed 2 invasive breast cancers, two different types of cancer. I've seen estimates that 30% of all breast cancers are missed on a mammogram. And the younger you are, the more likely that cancers will be missed.

I would really consider a mastectomy. If they have to take too much breast tissue to get clean margins, then you're not going to be happy with the way it looks. You can always have reconstruction with a mastectomy, but I've not heard of anyone who had reconstruction with a lumpectomy. They come up with new ways of doing things all the time, so I could be wrong about that!

At least there is no evidence that the cancer is invasive, so that is good news.

Take care...
Hugs...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 6/27/2009 8:17 AM (GMT -7)   
I agree with Bev. With wider margins and then radiation, there won't be much size or shape left in the breast tissue.
 
Judy

LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 6/28/2009 8:54 AM (GMT -7)   
Hi Judy, thanks for your note, and Bev, thank you too! A follow up call with the RO told me that they are all in agreement that I need more surgery; he said this is not your garden variety, benevolent DCIS; he said this is serious, angry, aggressive stuff and how it's not invasive is a mystery to them; so I may be heeding your words..

We're heading back to see my surgeon tomorrow to go over treatment options; her nurse told me that she will want to discuss both mastectomy as well as a re-excision...how do you make that choice? I'm keeping your counsel in mind and will be back when I have more news
:)
Janice

Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 6/29/2009 7:47 AM (GMT -7)   
Hi Janice,
I think seeing my story may be helpful.  Back in the spring of 2000, I entered an experimental program for screening "high risk" woman for breast cancer at Memorial Sloan Kettering Cancer Center in New York City (my mother and sister both diagnosed with bc).  The new protocol included screening with mammo, ultrasound and MRI. MRI had not been used for breast cancer screening before.  The mammo and u/s were both negative and the MRI showed 3 one cm lesions in one breast.  I then had an MRI guided biopsy where 3 titanium needles were placed to mark the lesions.  My doctor then had me get another mammo with the needles in place to see if she could see the lesions with the needles. She still could not see anything on the mammo! It turned out all three were DCIS (high grade and agressive, but not invasive).  She recommended a mastectomy because the three areas were in three separate quadrants (multi-focal and multi centric) and she suspected there might be additional areas of DCIS that were unable to be detected because of their size.  I chose to do a prophylactic mastectomy on the "normal" side in additon to the mastectomy on the cancer side.  The final pathology report after the mastectomies showed an additonal 5 areas of DCIS (sub-centimeter in size) on the cancer side and and one area of DCIS on the "normal" side! I did immediate reconstruction with implants and have never regretted my decision. 
 
It is 9 years later and I am NED and my implants look as good today as when they were first placed. I have always felt lucky that I was able to find my cancer early.  You are very fortunate, too! You seem to have good doctors on your team. Let them help you find the treatment plan that will give you the best chance for success; one that you will be able to live with.
BTW, MRI screenings have since become the new standard of care for women who are considered "high risk". Unfortunately there are too many false positives to be used in the "normal" population. 
Good luck! FK

LdyJane
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Date Joined Jun 2008
Total Posts : 903
   Posted 7/1/2009 5:54 AM (GMT -7)   
Frayda, thank you for sharing your story. We did go back on Monday; the DCIS is similar to yours and I am going to have a mastectomy; she told me that they would not be surprised to find an area of microinvasion or outright invasion.

Because of the high false negative rate we are going to forego the MRI for now, MSU has a new type of mamogram machine that is beyond the normal digital type..I'll be screened every 6 months on the left side to watch.

I'm struggling a bit here, maybe you can give me words of wisdom! This started out as an itty bitty, no big deal DCIS; expected to be 1 cm or less and in a very short time its become just the opposite. The last two days I'm finding myself becoming more emotional about this, and that is normally not my style..I cannot reconcile this change very easily. It's still not a fear of cancer, I think its the realization of the magnitude and the fear of what it's going to look like afterwards.

I am going to have reconstruction, but it will be later for so many reasons; I wish I could do it at the same time, but it just doesn't look like that is possible.

Thank you, everyone, again, for helping me down this path.
Janice

Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 7/1/2009 6:29 AM (GMT -7)   
Hi Janice,
It seems you and your doctors have formulated a plan! Tests and treatments will become a full time job forthe next 6 months or so. This journey will take you down a bumpy road and you will be on an emotional rollercoaster. This is normal. We have all experienced it. We are here to help you through this. Please keep us in the loop!
Frayda

JUJU8872
Regular Member


Date Joined Jun 2005
Total Posts : 349
   Posted 7/2/2009 6:17 AM (GMT -7)   
Yes, the next few months will be a roller coaster for you, but everything will be o.k. Remember, now you are a breast cancer survivor. (Judy's Opinion: If you don't drop dead when they tell you, you are a breast cancer survivor!!!) I do not believe your nor anyone can get their arms or head around all of this at once. Take it one step at a time, write down questions and concerns for you doctor to answer. As for reconstruction, I waited 4 years, but if I had it to do over I believe I would have done it a little earlier.

Stay in touch and don't forget to get and keep copies of all your path results, from first biopsy to final surgery.

Judy

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 7/2/2009 6:26 AM (GMT -7)   
Hi Judy and thank you too. I posted this on the other forum with the folks that I speak to regularly. I'm feeling a great deal of relief today because of the phone encounter I had yesterday with the head nurse at a reconstructive specialist not far from my home:

~~~
I'm 1 1/2 years from retirement and I am trying rebuild my leave balances (after using them all last summer for the Nissen), so right now I have just enough to cover 5 weeks of being off. That has to see me through the surgery coming up and any follow ups...that leaves nothing for reconstruction. Where I work I do have disability, but it affects my retirement date, my pension and other things, and being so close to that date, I have to keep that in mind.

Anyway, long story short, I was put in contact with an exceptional reconstruction specialist, just 1 1/2 hours from home. I called and his nurse talked with me for 40 minutes and told me so much. The best news ( for me) is that I can wait until after I retire to do the reconstruction! The reconstruction takes 8 to 10 weeks to recover (get this) from the FIRST! phase of the surgery..you have to go back for a second go round 6 months later.

My point, I guess, is that being given the freedom to wait until after I'm retired frees me from the worry that I've been carrying about this time issue. I slept last night so soundly, it was wonderful!!!!
~~~
I am, by nature, a control nut. knowledge, order, that's me! The issues I have had with this is not being able to get the knowledge and the the inability to put it into an order in my head to make things work for me. I think, with the conversation I had yesterday, that this is finally coming together and with that comes peace of mind for me....I am so grateful!!!!

Janice

barkyboys
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Date Joined Jul 2003
Total Posts : 1564
   Posted 7/2/2009 4:40 PM (GMT -7)   
Oh, I wish I could say I'm only 1 1/2 years from retirement! What kind of reconstruction are they recommending?

BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 7/2/2009 5:45 PM (GMT -7)   
I haven't a clue!! I meet with the first surgeon on Monday and then we're meeting with a second one on Tuesday. I'm want to check them out, listen and decide on who before the surgery; see what my options are, I have a lot of time to determine which is best for me. I know that one of the recons' nurse that I spoke with mentioned that he would like to speak to my surgeon before the surgery to talk about technique..I do like that...so, we'll see.

Just had a call from my surgeons' office; d-day is July 22nd; nothing like a dose of reality to start off a holiday weekend LOL!
Janice

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 7/2/2009 6:41 PM (GMT -7)   
Most reconstructive surgeons want to do that. I had my reconstruction at the same time, but it was the Plastic surgeon who marked me up like a side of beef before the surgery. Did everything except write, "cut here." LOL Anyway, you know, I know several women who waited before reconstruction, and they came out with great results. I think their recovery time was better, too. So there is nothing wrong with waiting, especially if your PS is in touch with you surgeon.

Take care...
BEV
"There's a difference between a philosophy and a bumper sticker."  --Charles Schulz


babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 7/11/2009 2:22 PM (GMT -7)   
Janice,
 
HI.  I haven't posted here in a while and saw your posts.  I had a similar (I guess) situation.  Initially had a lumpectomy and during surgery, they discovered further cancer.  Had a mastectomy 3 weeks later.  Then, about a year later decided to have a TRAM flap reconstruction.  At first I didn't want reconstruction, but I am so glad I did it.  I went through chemo and radiation, also.  Mine was DCIS, stage IIIA with mets to 1 lymph node.  The main tumor was 5cm.
 
You will be having a rough time ahead, but you will get through it with the help of these ladies here.  They were my rock during my treatment.
 
Good luck to you!
L & H,
Kathy

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