Diagnosed with 2 forms of breast cancer

Yep. Sounds Familiar.

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 said:

Thanks alot for your history....

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.

 

 

 

I had only IDC and they didnt get clean margins
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 said:

Thanks alot for your history....

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.

 

 

 

I was a fluke

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 said:

your IDC...."no clear margins"

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?

I had both

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

PSH238 said:

Thanks alot for your history....

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.

 

 

 

I would like to welcome you

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 said:

your IDC...."no clear margins"

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?

My path report said I had

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 said:

Whoopeee...Clear Margins!!

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

I am done with surgery, I had

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

Clementine_P said:

I had both

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

I don't have these 2 bc's.  I

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