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Diagnosed with 2 forms of breast cancer

PSH238
Posts: 9
Joined: Feb 2013

In December bisopsy found DCIS......I was told this was a "diagnosis" but that fina; pathology would be done at time of lumpectomy which I have had and pathology just returned last week.  Consult today indicates pathology now show invasive ductal carcinoma PLUs LOBULAR (Invasive)......Lobular has now taken it to STAGE 1 where it was STAGE 0....BUT, THIS IS A CREEPING DIAGNOSIS....This Invasive Lobular is "speckled" on 4 of the 6 sides of the lumpectomy and altho very minute "speckles"...surgeon does NOT feel confident that he can go back in and "get around it" with a larger lumpectomy since it it is in varied places.  He has recommended a mastectomy and at that time, lymph nodes will be tested.......CREEPING CANCER??   He says this is a very early stage cancer and Lobular did NOT show on the Mammogram.

Has anyone else experienced this and any suggestions or comments?  What should I research? 

cinnamonsmile
Posts: 1059
Joined: Dec 2010

If it were me, I would research DCIS, IDC(DCIS is not the same as IDC), and ILC. I do know that I have read that ILC can be a sneaky cancer, that it can sort of be hidden on mammograms.

You can get good information at cancer.org, breastcancer.org (breastcancer.org also has a discussion forum for Mixed Type Breast Cancer and ILC),www.cancer.gov.You can also call the American Cancer Society at 1-800-227-2345.

I found it very helpful to read up on the very basics of breast cancer in the websites and informational packets the doctors gave me. I didn't read it to diagnose myself, I read the information to learn all about cancer.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I am sorry that you have been diagnosed with bc.  I was diagnosed with 2 also, and, I think many are.  I don't know anything about lobular.  I am wishing you the best of luck and keep us updated.

Hugs, Leeza

PSH238
Posts: 9
Joined: Feb 2013

Thanks Leeza...............best of luck to you too.

PSH238
Posts: 9
Joined: Feb 2013

Thanks so much for the references to the various sites.....I looked at those sites initially when told I had DCIS but, yes, I now have to go back and research the mixed types and IDC and ILC...

Very much appreciate your help.

telecomjd
Posts: 66
Joined: Jan 2013

I only had one type of breast cancer -- lobular invasive carcinoma.  My lumpectomy did not yield clean margins.  My surgeon discussed the creeping and speckling with me. I had a choice of re-excision or a mastectomy.  I went with mastectomy, and I ended up with very wide and clear margins.  

The big question that I would have is the role of radiation.  My oncologists and surgeons have not recommended this course for me at this time.  But, I would totally do it if they had -- best to clean this mess out.  I am doing chemo, so I am probably covering enough bases... maybe.  (I feel like I can never do too much).

I'd also ask what they need to do to get clean margins.  They removed some of my pectoral muscle.  Seemed to be well worth it to get the disease out.  I'd ask what effect that will have on your your recovery.

Hope this helps.

PSH238
Posts: 9
Joined: Feb 2013

Did they find you Lobular on a Mammogram as a lump?   Am assuming that since you mention "speckling" , that this WAS NOT VISIBLE ON A MAMMOGRAM.  I have asked for an MRI since this Lobular was only found by accident and I have heard that it is often in the other breast as well.  I have had to totally change my research approach as I was told that I had DCIS and did all the research surrounding that............infact had been pre-approved for a clinical trial pending outcome of this lumpectomy. The clinical trial involved RADIATION .  I am feeling very UNCERTAIN AS TO THE COMPLETE DIAGNOSIS ..........Sorta  like "we can't tell you until we do the mastectomy"...The surgeon said yesterday that unless several lymph nodes are involved, he doesn't believe any chemo is necessary.  But, that's why I labeled it "creepiing" and WITHOUT FIRM DIAGNOSIS.  I want TO SLOW THIS TRAIN To mastectomy way down.............find out if it's in the other breast before I go into surgery to remove the one breast.   Maybe they will have to take Both breasts............this whole "take a wack at it" process is NOT confidence building.

 As for what they need to do to clean up margins............the surgeon says he doesn't know if re-excision would do it since he doesn't know where the lobular is exactly.  How has your recovery been with some pectoral muscle involved and how did he/she KNOW to take the pectoral muscle? Since the pathology is down AFTER the surgery.

Thanks so much for responding to my post.

 

 

 

telecomjd
Posts: 66
Joined: Jan 2013

So, I was a fluke.  I found my lump myself.  My surgeon said it was so "subtle," she may not even have followed up on it if it were her.  I was lucky.  I just felt something weird sticking out a little.

I knew from the first biopsy that it was invasive lobular carcinoma.  After that, we did MRIs with contrast to pinpoint where the cancer was.  It was only in my right breast; we confirmed once and for all post-mastectomy that my left side was clear (as predicted by the MRI).

Sadly, we started with a lumpectomy that did not yield clear margins.  The pathology showed my surgeon precisely where the speckling was (chest wall for me).  So, we knew where we had to go for a mastectomy or re-excision based on pathology.  

If I had not done a mastectomy, I would have needed radiation.  I did chemo because of my oncotype score.  The treatments are supposed to lessen my chance for distant recurrence.  If that's not recommended for you, do a happy dance.  :-)  

I am in pretty good health (still working out on chemo), so my recovery was a breeze, even with the pectoral muscle taken back.  I was back in the gym two weeks and one day after my mastectomy.  Of course, I was not lifting weights, and I still have not gone back up to lifting what I could, but I found that exercise has helped.

  

 

 

 

 

PSH238
Posts: 9
Joined: Feb 2013

You say it was confirmed once and for all (post-mast) that your left breast was clear.........did you have double mastectomy??

telecomjd
Posts: 66
Joined: Jan 2013

I had both sides done.  Christmas gift to my husband.  LOL.  I guess it was a gift to myself as well.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I would like to welcome you to the site, though I am sorry for the reason.  Breastcancer.org is a really great site too.  They have individual forums for everything about breast cancer.  You might just check it out.

Hugs, Angie

PSH238
Posts: 9
Joined: Feb 2013

Did they find you Lobular on a Mammogram as a lump?   Am assuming that since you mention "speckling" , that this WAS NOT VISIBLE ON A MAMMOGRAM.  I have asked for an MRI since this Lobular was only found by accident and I have heard that it is often in the other breast as well.  I have had to totally change my research approach as I was told that I had DCIS and did all the research surrounding that............infact had been pre-approved for a clinical trial pending outcome of this lumpectomy. The clinical trial involved RADIATION .  I am feeling very UNCERTAIN AS TO THE COMPLETE DIAGNOSIS ..........Sorta  like "we can't tell you until we do the mastectomy"...The surgeon said yesterday that unless several lymph nodes are involved, he doesn't believe any chemo is necessary.  But, that's why I labeled it "creepiing" and WITHOUT FIRM DIAGNOSIS.  I want TO SLOW THIS TRAIN To mastectomy way down.............find out if it's in the other breast before I go into surgery to remove the one breast.   Maybe they will have to take Both breasts............this whole "take a wack at it" process is NOT confidence building.

 As for what they need to do to clean up margins............the surgeon says he doesn't know if re-excision would do it since he doesn't know where the lobular is exactly.  How has your recovery been with some pectoral muscle involved and how did he/she KNOW to take the pectoral muscle? Since the pathology is down AFTER the surgery.

Thanks so much for responding to my post.

 

 

 

camul's picture
camul
Posts: 2140
Joined: Dec 2010

Prior to this my sister in law had a mast for IDC, and when path came back she also had lobular. S he was told that it does not show on mammo. But she had the mast which is what they would have suggested after finding it if it would have been on a biopsy or lumpectomy.
Welcome to this site. There s a wealth of info throuh many who research, personal experiences, a great, suportive group of pinks who have helped me through so many rough times.

Wish you the best.

PSH238
Posts: 9
Joined: Feb 2013

So you also had a mastectomy with IDC?  Appreciate your sister-in-law experience...

Thanks for your encouragement towards this site............I am amazed at the good directions and info to my one post.........I think the "pinks" walk a fine line of trying to lead normal lives and not fixate on the disease once their surgeries and therapies have ended...........to try to think of it as just an "interruption".............but does it ever end?

Clementine_P's picture
Clementine_P
Posts: 398
Joined: Feb 2011

DCIS and ILC and my ILC was not visible on my Mammogram despite the fact that it was several centimeters.  I was told that I would have to get a mastectomy (I was small breasted and a lumpectomy would not work) but instead I opted for a double mastectomy.  I had various reasons for opting for the double.  In any case I was staged at 2A and had chemo but no radiation. 

Best,

Clementine

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

My second primary was ILC it is sneaky as it did not show on mammogram. I had chemo, mastectomy, and chest radiation.  I felt it.

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I don't have these 2 bc's.  I do want to wish you good luck and for you to know that we are all your pink sisters, ready to help you in anyway.

Hugs, Lex

Pink Rose
Posts: 495
Joined: Nov 2012

My path report said I had infiltrating and ductal carcinoma in situ, so, that is 2 types too?  I did have clear margins with my lumpectomy.

 

PSH238
Posts: 9
Joined: Feb 2013

That is awesome to hear...........sounds like you are past treatment?

Pink Rose
Posts: 495
Joined: Nov 2012

I am done with surgery, I had a lumpectomy and followed it with radiation treatments.  I was one of the very lucky ones that did not need chemo. Yes, clear margins was great to hear!

I wish you good luck!

Hugs, Rose

Faith_In_God
Posts: 76
Joined: Mar 2013

Dear PSH238

I had a lumpectomy last Jan 15 and the pathology showed both DCIS and ILC components. My aunt (the pathologist) explained that ILC is not usually diaganosed easily using mammograms because it doesn't usually make lumps. Its cells usually hides inside normal cells and doesn't usually make lumps, that is why it is a very sneaky type of BC. She said that I was lucky because I had a DCIS component which created the original lump (or most of it). 

My Oncologist insited that I should have a Bilateral Breast MRI before I start the chemo because it is know that ILC sometimes comes in both breasts at the same time. Maybe you should discuss this option before having a mastectomy.

I hope this will help.

Faith

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

 

I also was diagnosed with 2 types of bc.  I had a lumpectomy and then radiation treatments.  This is what my oncologist and breast surgeon both thought was the best treatment for me.

 

I see you haven't posted anything lately, and also, are wondering how you are doing.  I hope you can update us soon.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I had both ductal and lobular invasive carcinoma in one breast.  Only the ductal showed up on the mammogram and I had already chosen a mastectomy.

I never developed cancer in the other breast.  Lobular is known as a sneaky cancer as it isn't a lump and often missed especially on a mammogram.  That is why mammo's are not considered the perfect tool.

Wishing the best and hope all works out for you,

Doris

Lynn Smith
Posts: 1265
Joined: Mar 2011

My sister was dx last year with 2 types of different cancer in each breast.One breast was DCIS invasive.The other breast I'm not sure of.Just remember the DCIS dx.I asked my oncologist about this and she said it's rare.She said we only see maybe 2-3% of our patients with this type of cancer and this dx.IMO just more complicated but my sister is doing fine.Had 4 rounds of chemo, no radiation but takes Armidex for 5 years.She had a double masectomy with reconstruction.They also checked her lymph nodes.I think 2 were involved.

Wishing you the best.It does make things more complicated and a worry about what to do.

Lynn Smith

 

 

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Have you come to a decision yet on your surgery? 

Hugs, Megan

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