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DCIS

rsnewman41's picture
rsnewman41
Posts: 4
Joined: Jan 2010

Hi, my name is Robin and I'm new here. I had my mastectomy a few months ago and have been looking for someplace to get info and advise. I had DCIS left breast with mastectomy being my only choice. No chemo or rads and I'm ER-, PR- so no hormone therapy. I never found a support group that fit for me and maybe that was my fault but when I sit and listen to what other women have gone through with the chemo, hair falling out, nausea, etc. I just don't feel like I fit in. I'm not even sure I have the right to call myself a breast cancer survivor since I didn't have to go through any of it. When I have looked into programs that I've heard about I usually am told they are for women going through chemo or rads so I'm still looking. I saw an oncologist that said DCIS isn't really cancer! Than can someone please explain to me why I had to loose my breast? Is there anything for those of us with DCIS?
I feel so awful feeling like this but I can't tell my friends or family-they think I'm so strong and over it. This is my fault because when I had my surgery they were so worried so I just acted like it was fine, I was fine no problems and I went back to work after 3 weeks so on the outside I have to be ok. On the inside I'm a mess! I'm scared of the cancer coming back and having to do this again, I'm still having pain and I really feel UGLY! Although my husband says I'm beautiful and he didn't marry me for my breasts I still feel like an alien.

Well at least I have been able to vent here and hopefully no one will think I'm a whiner (even though I am) I do feel a little better. Thanks for letting me vent.

chickad52's picture
chickad52
Posts: 499
Joined: Jun 2009

Hi and welcome to the site no one wants to be in! Please don't feel you are whining! Not at all! Cancer is cancer no matter what form it is. I have stage 2a, had chemo, and a left mastectomy on Nov. 23. Next will be rads. Reconstruction and a right mastectomy will follow later. It sounds like you have a very supporting husband and family, but I feel you never get over how you feel. I think I will live with fear all my life. I was told it is normal. Please don't feel ugly! You are a stong beautiful woman. And thank God we are getting through this!! You will find alot of wonderful people on this site who are so full of information and everyone has their own story that they may share. Good Luck to you and lots of Hugs, Diane

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dear rsnewman,

I too have had DCIS. Some say it's 'pre-cancer' but cancer is cancer and you're right, you lost your breast so it had to be something that was considered pretty serious. I was diagnosed in August and have delayed on making a decision on whether I want to do radiation or go ahead and have a double prophylatic masectomy.

I think what you're going through is normal. We're strong because we have to be at first to get through it and once everything has happened, there is often a delayed emotional response to what we've been through. Be it Post-Traumatic Stress Disorder ... or whatever ... a lot of women on here have experienced what you're experiencing.

Don't believe it when it creeps in to your mind that you're no less a survivor because you haven't had chemo ... you've had your breast removed and that is BIG DEAL!!!! You have every right to feel sad, to mourn, to lament, to scream, whatever it takes. It's a loss and it takes time to physically and emotionally heal from it.

Do find your local of chapter of the American Cancer Society and try to find a support group. And you'll find help and encouragement from the women (and men) on here too.

Hang in there and take care!
dh

monala
Posts: 2
Joined: Jan 2010

I am glad to know someone that didn't go immediately into a surgery without thinking...
dsis is not cancer so why do women elect to have a mastectomy?
I am going to have a lumpectomy then I will see what is next
I am getting a second opinion
regarding the biopsy results
mammograms have improved so well that now we are treating dcis as if it were cancer
and more and more women are opting for double mastectomies
I don't fit in
what are your thoughts?

Dot53
Posts: 236
Joined: Nov 2009

I too have DCIS and had a double mastectomy just a few weeks ago. I never heard that this kind of cancer was considered pre-cancerous or not even cancer... what the heck? I am going to see my oncologist tomorrow and am going to ask him about that..

I feel just as you do.. ugly.. probably uglier cause I lost both. I said as much to my husband and he flipped out and said the same thing your husband did. It is a hard thing to accept but I have to think that I did the right thing b/c I can't go back and change it.

You found the right place to vent... there are so many wonderful women on this site at all times of the day that are more than happy to listen and respond.

Best wishes,
Dot

rsnewman41's picture
rsnewman41
Posts: 4
Joined: Jan 2010

thanks for all of the kind comments. I try not to have a pity party because it really doesn't solve anything but some days I can't help it. I'm going to start reconstruction on jan. 20th so I know there are some bad days ahead. I keep telling myself I made it through the mastectomy and I'll make it through this too but I keep hearing about all of the pain that comes with the fills to the expander. I wanted to have both breasts removed at the time of my first surgery but my BS said no, he wouldn't do it. I have no HX of cancer in my family and he (as well as 3 other surgeons) wouldn't do it. I have found a very good PS than my friend used for her reconstruction so I'm confident that in the end I'll look pretty good but it's just getting there! I wish it was over!

thanks!
Robin

sparky72156
Posts: 61
Joined: Dec 2009

I know exactly how you feel, Robin. I've been told that my DCIS is a pre-cancer and that surgery will take care of it (provided that the final pathology remains DCIS). So I, too, have had that "survivor's guilt" of not really being a survivor in the true sense of the word. It feels to me as though, if I get out of this with surgery only, I haven't endured what other women have, so I can't really call myself a survivor. On the other hand, the stress that I am under right now.....trying to make the decision to have a bilateral mastectomy for peace of mind, or risk keeping my left breast with all the fears that go along with it, is pretty tough, too. I lost my husband four years ago to brain cancer, so I don't have someone who will say to me "I love you no matter what your breasts look like", so I am trying to factor a future dating life into this, too. My breasts have never been a selling point for me.........they are small and the reconstruction may make them smaller.....but let's face it.......men like boobs. Maybe it's because they ARE boobs..who knows? But I have to say that I think that this stress level has to count for something. So when I do the Susan G. Komen 5K next year, I will probably put myself in the survivor catagory, if for the stress of it alone.

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

My best friend I grew up with must of had the exact same as you, her's was also DCIS, she had immediate reconstruction, TRAM flap. this was 11 years ago. She is doing fine today. She told me she never had to have RADS or Chemo. So, it must be similar to you. I hope this gives you some encouragement.

sparky72156
Posts: 61
Joined: Dec 2009

Lanie.........did she have a bilateral mastectomy or just on the side that the DCIS was in?

jk1952's picture
jk1952
Posts: 613
Joined: May 2009

I had a small amount of invasive cancer in 2000 and had a lumpectomy and radiation, and this year, DCIS was discovered in the same breast. A mastectomy was my only treatment option and I decided to have a bilateral mastectomy with immediate DIEP reconstruction, which was done in April. In my case, the lumpectomy and radiation (for the invasive cancer) were a walk in the park compared to the mastectomy and reconstruction (for the DCIS). I believe that anyone who has lost a breast or had a lumpectomy and radiation because of DCIS should be considered a survivor.

I, too, have felt that I 'wasn't worthy' because I had never had chemo. (I have also thanked God that I never had chemo). And, both times that cancer was found, it was found very early. That doesn't make it any less traumatic or emotional, so please don't be afraid to vent when you need. It is a roller coaster ride, but there is a good life after cancer and treatments.

Joyce

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

Just her left breast was removed.

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

I too had DCIS, not the 'real' cancer. And as people here have said, the fear of what's ahead when you get the diagnosis is just as high as everyone's. By the time I got the dx, I had done a good bit of research and knew that DCIS can have its good points and its bad ones. From all the tests and images done, it seems I had it only in one spot and, by taking a HUGE excision (10cm), the surgeon got clean margins the first time. My radiation was quick (brachytherapy) but grueling. I still have pain where the lumpectomy was done and in the scar. There are 90 red spots on my now-much-smaller right breast where the catheters went through. I have chest muscle and arm stiffness and hard spots all around in that breast. I wonder if any of it is cancer. When my gut hurts, I wonder if it is cancer. When my bones ache for more than a day, I wonder if it is cancer. I question every thing I eat, "will this contribute to cancer growth?" I have my first post-treatment MRI later this month and a diagnostic mammogram next month, which I fully expect to tell me there is nothing but the usual calcifications and fibrocystic disease in my breasts and no sign of cancer. But...When I get a sore muscle or a headache, or, as the other day, chest pain, I wonder if I have blood clots from the ongoing hormone therapy. My life is not the same. However.... I have had an easy route compared to many.

Their stories fill me with courage and hope. I wish I could give back the same. What an amazing journey life is.

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

Having chemo or rads doesn't make you any more of survivor. Having DCIS meaning your cancer has not become invasive is the news we all wanted to hear. That is wonderful but you are still a survivor!

But I know how you feel, I only had to have 4 chemo cycles (I'm triple negative so no hormone therapy for me) and when I read what so many on this discussion board have gone thru I have felt practically the same as you.

But your fears are the same as everyone else's, you had a mastecomy, if that doesn't qualify you has a survivor I dont know what does.

I had a single, simple mastecomy and no reconstruction, I love my prosthetic boob, it looks an feels real. I have never thoght I looked ugly ('cept for bald head) so don't beat yourelf up. You have a great husband, don't be afraid to cry in front of him or your friends and let them know how scared you are. They will support you.

Good luck on you reconstruction and you are beautiful now and will be beautiful afterwards.
You go girl!

Hugs, Judy :-)

cjhw
Posts: 3
Joined: Jan 2010

Judy,
I see you have been diagnosed as triple negative. I was just diagnosed last week. I see my oncologist tommorrow. How did you find an oncologist and how did you decide what was the right course? Do they make any adjustments in the chemo since tn?? I am still dealing with the fact that I am going to loose my hair which I know is the least of my worries. I love your cat picture!! Thanks for any and all info. I just found this site today and it is unbelieveable...when I read other people are having the same thoughts and fears...it lets me know it's ok and this too will pass!!
CJ

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

You might want to read some of the other posts on here about being triple negative. In general, your chemo regimen will remain the same. There is some work being done right now on PARP inhibitors as a particularly effective regimen against triple negative, but it is still in clinical trials. I got TAC chemo, six times, and would have had the same had I not been triple negative. It sounds scarier than it is, CJ.

Mimi

Skeezie's picture
Skeezie
Posts: 583
Joined: Aug 2009

I already had a good surgeon that I loved from a breast biopsy 5 yrs. ago (benign). I asked him for a referal to an onc and my Internist as well. As it turned out I found her on my own online. She is part of the team at a very respected cancer center here and they have a satilite opening near me and her qualifications werre what I was looking for. She is great. I just love her. I made the decision to have the mastectomy after my second wide incinsional biopysy and Sentinal Node Biopsy (clean nodes). I still didn't have clear margins and there were little DCIS plus the invasive cells mixed in. I decided the breast must go. I was very lucky cause when they checked the removed breast tissue there were no cancer cells found. This meant no radiation, just chemo. My onc selected my course of treatment...4 cycles of Cytoxin/Taxotere. I had my 4th treatment on Dec. 11.

Thanks for liking my kitty, her name is Bootsie. We have 8 kitties, all rescues. My husband and I are on the board of our local Humane Society and are very active in fundraisers etc. Now that I'm feeling better I'm glad to get back to it.

If you don't like your surgeon or onc, find another one you do like. It's very important to have a good, trusting relationship. Mine spends as much time as I need when I'm there, answers all questions, writes everything down I say and is a great listener. You'll get thru this and it's amazing that eeach deciison just happens as it comes...you can't make them all at once, just one at a time. Everyone here is ready to listen and give good advice.

You'll do fine, and we can't help but worry, especially at first. But as you gain knowledge about this, the worry gets less and easier to deal with.

Hugs, Judy :-)

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

I was diagnosed with DCIS and heard the words "you have cancer". I understand how you feel but cancer is cancer and as others have said, you lost a breast--they don't do that for possibilities. FWIW the director of the Komen center in Las Vegas NV is a DCIS survivor. So, yes, you are a survivor.

Maureen

teresa41's picture
teresa41
Posts: 453
Joined: Jun 2009

i also was diagnosed in april with dcis the surgeon told me i had cancer! i had a lumpectomy 4 rounds of chemo and 33 radiation treatments and now take tamoxifen, i think anything that happens as a result of breastcancer is not easy we all are survivors!

best of luck to you...

teresa

rsnewman41's picture
rsnewman41
Posts: 4
Joined: Jan 2010

teresa-
thanks for the reply but I have a question. If DCIS was the DX why did you have to take chemo and rads. I was told DCIS DX never has chemo as treatment just sometimes rads if a lumpectomy is done. I have several large cysts in rt. breast plus calcifications but they look benign to the dr so he and the oncologist didn't recommend chemo. It's not that I want chemo but I just want to make sure it really is gone. The time before my mastectomy was such a dark time and I really don't want to go through it again if I can prevent it. I'm very confused with all of this.

helen e's picture
helen e
Posts: 222
Joined: Sep 2009

I too have gone through the same thing, only I am ER+ and on Tamoxifen. I had invasive ductal carcinoma that didn't spread out of my breast. When they did the lumpectomy they found that it was more aggressive than they thought and was in the ducts, too. I had my mast. for DCIS and am now cancer free(according to my onco.) I had a sentinel node biopsy during my lump. and they were clear too.

Not long ago I posted a topic called cancer fraud because I feel just as you do. I don't have to have chemo or rads. and just had my mastec. and tram flap reconst. 3 weeks ago. My surgeon did an incredible job and all the nurses said it was his best work. My sisters and husband all can't believe how well I look, even still have the scar from my lumpectomy. I know how well I look but I can't stand to look at myself. I know that it's all in my mind that eventually (I hope) I will come to accept this change to my body. My husband says that he married me, not my breast and has been just wonderful about it all.

I hope you are able to find peace and know that we all all here for you whenever you need us.

terri805
Posts: 123
Joined: Dec 2009

I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I don't know for sure Terri, but, sometimes the plastic surgeons have to take out so much breast tissue to get a clean margin that you wouldn't have much breast left. In this case, many opt for the mastectomy as then they can have reconstruction. That is just one reason that I know of why some have mastectomy's instead of a lumpectomy. Also, some women do not want to have radiation treatments, and, you almost always have to with a lumpectomy. I was told that I had DCIS until I had my lumpectomy. The path report came back with DCIS and IDCS ( invasive ). But, my tumor was really small and my plastic surgeon got clear margins the first time.

Sue :)

terri805
Posts: 123
Joined: Dec 2009

Did you have to have radiation treatments after your lumpectomy? Is there something really bad about radiation treatments that I should know about before I do it? It is all scary to me and I want to do the best thing for myself.

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

There is nothing scary about radiation treatments. I think people fear them just because they know nothing about them. I had 7 weeks of rads and never got burnt. I even miss going, I miss the techs, my rads doctor, the people in the waiting room, the receptionist, everyone. And, I knew that the radiation was killing any stray cancer cells left over from my lumpectomy. My hubby took me everyday and we always did something fun. He made it fun for me. It really did go fast. I met with my rads oncologist and the team of techs before I started. They explained everything to us, showed us the radiation room and machine, showed us the computers that they use, gave us literature, made us feel very comfortable. They also let my husband stay outside the rads room and watch me when I was getting zapped. Knowing that made me even feel better. It only takes a few minutes for the treatment. I got the tattoos, but, you can't really see them they are so small. I did get very tired towards the end, so, I started taking naps and trying to get to bed earlier than normal. My skin did get very pink, but, after I finished, within a few weeks, my skin looks and feels like a baby's skin. It is beautiful! I hope this answer helps you Terri.

Sue :)

terri805
Posts: 123
Joined: Dec 2009

Sue,
Thanks for your response. It gives me some comfort and lessens my anxiety about the radiation treatments. I had read somewhere that it could cause heart damage since the area being treated is so close to the heart. It is my right breast that will be treated. Have you heard anything about damage to the heart?

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

It is possible, Terri, but more so if your left breast is being treated. These days, they are extremely meticulous in making sure that the radiation does not affect the heart. There will be a team of physcians and scientists measuring and calculating the radiation beam so that the heart and lungs remain safe. Ask your radiation oncologist to explain the process and I guarantee you will feel better about it.

Mimi

crselby's picture
crselby
Posts: 379
Joined: Oct 2009

Hi Terri,
I am a "graduate" of a different kind of radiation that spares the heart, lungs, ribs, and unaffected breast tissue better than whole breast radiation. It is called accelerated partial breast irradiation (APBI). There are several ways to receive the radiation but all of them are internal. Only the areas around your lumpectomy cavity are zapped. I hope you can ask your doctors about it or look up Mammosite, SAVI, or Contura through Google to find out more. Best part: it takes 5 days, not 6 weeks! I finished Sept 4, 2009.
~~Connie~~

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

I had a heart attack July 3, 2008 and I believe it was related to my left sided radiation because I had radiation in the 80's. I have no other risk factors: low blood pressure, not overweight, ok cholesterol, no family history, etc. However, I do not believe radiation is as risky today. They are so much better with directing the area to be treated. On a very positive note, I did not need a stent, the rest of my vessels were completely clear (great collaterals). I am on good heart preventive meds. And, most importantly, I am alive and feeling well going on 23 yrs later! I would have radiation again in a minute!

jikaras
Posts: 58
Joined: May 2009

Terri, I had a double mastectomy with immediate reconstruction. No need for radiation or chemo. Yes, the cancer cells were still in my ducts, however, I was not a candidate for a lumptecomy because the cell was attached to my nipple on the left side.....my right side had multiple cells that had DCIS.

I believe the surgeons give you the option of removing the breasts because the microcalcifications can multiply. The way my surgeon explained it to me, she said that she'd rather do a mastectomy than have me coming back a year later because of another cell popping up..

So yes, DCIS does not spread, but it can come back in another cell....

Jill

rsnewman41's picture
rsnewman41
Posts: 4
Joined: Jan 2010

Terri-

My only option was mastectomy because there was so much cancer in my ducts. It was upper and lower outer quadrants and then the breast MRI picked up more on the inner upper and lower quadrants. He said because of the mastectomy and clear nodes that I did not need chemo or rads because he got it all.

kimberlyrose's picture
kimberlyrose
Posts: 15
Joined: Jan 2010

Hi Terri. I was diagnosed with DCIS and had to have a mastectomy. I had 18+ calcifications scattered throughout my right breast. The surgeon said that there were too many to cut them all out individually with confidence that the margins would be good. So my only option was a total mastectomy with a sentinel node biopsy. Pathology confirmed that all the DCIS was still within the ducts and had not become invasive. Thus, I won't need any follow up chemo or rad. Hope that helps...

Kimberly

lisamcsherry
Posts: 29
Joined: Oct 2009

In my case I had DCIS in three lumps (7, 5 and 4 o'clock) and one lump (at 10 o'clock) that was unable to be biopsied . . . so a mastectomy seemed to be the most (visually) appealing solution. The three were ER+, nodes were negative, and my margins were almost clear (they'll do a re-excision with my implant to get clear margins). BUT! my Oncotype was 42.

So its chemo for me, and Tamoxifen, and my oncologist says we'll get my recurrance % down to single digits.

DCIS is cancer. It may be cancer ONLY in the breast, but they still check the lymph nodes. Cancer is cancer is cancer. It may be a single cell, but its still cancer. (IMO.)

monala
Posts: 2
Joined: Jan 2010

I have done a lot of reading since finding out that I too have DCIS 01_12_2009
it is not cancer so why the radical treatments?
I don't get it
there are plenty of Doctors out there that think that this is over diagnosed
I have become very skeptical of the thinking behind this DCIS
I am taking my time to make a decision as to a course of action
I am going for a second opinion and then I will have a lumpectomy at most
go on the internet and read
ahha what doctors don't tell you
maryann napoli
shelly huang
good luck an d be well!

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

I was diagnosed with DCIS a year ago and did alot of reading also. I am also a RN. There is some difference of opinion but *I* am not interested in being a test case to see if DCIS will spread. You may feel differently and that is your choice. Each case is different and each person who is diagnosed will feel their own emotions about how to proceed with treatment. And as time goes on there will be a larger body of knowledge to help make those decisions.

Good luck to you.

Maureen

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

And you definitely "fit in" here. We have several sisters here who have "only" DCIS. Doctors are split on whether they believe that it is actually cancer, pre-cancer, or what. But, make no mistake, it is scary. You went through surgery, you lost a breast. Please don't apologize for not having to go through chemo or radiation. This is a good thing! And no one here will judge you for being a mess on the inside. Perfectly understandable. Hugs to you.

Mimi

kimberlyrose's picture
kimberlyrose
Posts: 15
Joined: Jan 2010

I can't believe it's taken me this long to find this site/blog/post. I'm sitting here crying because I finally feel like I've found people who understand. I was diagnosed with extensive DCIS in my right breast at the end of Sept and opted for a bilareral mastectomy(even though BRCA was negative). I was told there was no need for ongoing treatment (pathology confirmed no invasion, but hormone positive). I've struggled with what to tell people or how to think about myself. I too don't really feel like a "survivor" because there's no ongoing battle at this point. I feel like I got of easy when so many women are not so lucky and that I shouldn't whine or feel bad. In a strange way, it's reassuring to know that other women feel the same way. Thanks for starting this dialogue and for everyone who has responded.

newbiefromcananda's picture
newbiefromcananda
Posts: 234
Joined: Oct 2009

cancer is cancer...some have to deal with more pysical aspects of it but to me if you have been given the diagnosis of cancer or PRE cancer its so scary so welcome... everyone fits in here YOU ARE A SURVIVOR!!!!! (((hugs))) Lisa

Wolfi's picture
Wolfi
Posts: 425
Joined: Aug 2009

Robin,

I had DCIS and a bilateral mastectomy. Although I have had radiation and am currently on Tamoxifen, originally I was not suppose to have to have either (just the surgery). I know what you mean - if DCIS isn't really cancer then why is the surgery so much more extensive than the procedures done for some of the IDC cases?

You don't have to be strong or be over it. I understand that you want to appear strong, fine and happy while you are at work, but it doesn't mean that you have to always be that way. I have had days when I've cried on the way to work and then stopped when I got there and went through my day like nothing was wrong. I figured that the people I work with don't need to know everything I'm going through in my personal life so I just focused on what I needed to get done at work.

I sometimes wonder why my husband stays with me after all of this but then he smiles at me and tells me that he loves me a lot and wants us to spend as many years together as we can. I see your picture and you are not ugly. It is ok to feel bad once in a while, but don't let it get you down for too long. Tell your husband how you feel and just let him love you.

Please keep posting and let us know how you're doing. I hope my experience can help you not feel alone in this.

Wolfi

Gloria09's picture
Gloria09
Posts: 190
Joined: Nov 2009

Welcome to the place where we are accepted by all no matter what the story, no matter what the mood, no matter what the concern. There are so many lovely people on this site that have experienced what you are going through at the same and at different levels. No matter what the type or the treatment there are many arms extended to give out hugs and comfort because we know how scared you are, we know about the pain, the sleepless nights, the questions. the need to feel feminine, etc.

So whine all you want because not only do we have a caring shoulder for you to lean on we also have the cheese to go with the whine :-)

( ( ( Hugs ) ) )
Gloria
P.S. I had DCIS, a lumpectomy and will start rads on Monday afternoon.

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