Pleomorphic ILC

Hi All, and congrats Toomuch on the low Oncotype score!

I had a PET CT on Tuesday and they called me the next day with the results, while I was waiting to be seen at MSK. My appointment was for 5:00, I wasn't seen until 6:45 and didn't leave until 8:45pm! How the doctors manage such grueling schedules is amazing.

PET came out good. Nodule in question did not light-up, bones look good but said some light-up under both arm pits. Yale relayed they are not concerned since might just be inflammation , and then offered to fax results to MSK, since I was waiting to be seen.

Yale recommended at consult TC, 2-3 weeks apart, 4-8 treatments followed by rads..

MSK recommended more aggressive treatment, due to size of my PILC and thus said it was a given some cancer cells were elsewhere in my system, where they could remain dormant for years and then surface as mets. Thus MSK is recommending ACT (AC bi-weekly X4) then T bi-weekly X4, for a total of 4 months, then 8 weeks of rads.

Sounds like the same treatment as yours Amig1, minus the herceptin. 

I specifically asked why she was not recommending just TC as Yale had, and she said ACT is tried and true best known treatment whereas TC doesn't have enough data, in her opinion, as it is only based on 1 clinical trial of 600 women! That was enough for me, so I've decided to be treated at MSK.

She is also recommending follow-up CAT on nodule in another 3 months saying resolution on CAT is superior to res on PET. She needs be to have blood work and Echo US to make sure my heart is healthy before treatment.

Another difference from Yale, MSK doesn't want to use a portacath, unless they absolutely have t since it would be a port of entry for infection. Not sure IV will work for me bc people always have trouble getting a good vein and have sometimes used baby needles. She said their Nurse Oncols are very experienced and I should wait and see.

Been on the phone all morning with my insurance, and thank God all is covered, even though MSK is out of State for me. Yeah! So looks like I'll receive my 1st dose in a couple weeks.

Regarding Pleomorphic status, she was evasive and said that fact doesn't dictate how they treat, rather they treat based on Stage and size of tumor. Interestingly, she also said MSK Paths don't grade (when I asked if I am grade 2 or 3 (been told both) because grading is considered subjective data and based on the Paths interpretation of what is seen under microscope.

I am very encouraged that so many of you are feeling OK going through and post chemo and want you to know your positive spirits are an inspiration!

Hang in there everyone and keep the faith, we will conquer this and have many wonderful years ahead of us!

Thanks for the name of the book Heather. I'm going to order  "There's No Place Like HOPE" on Amazon right now!

Hi Amig1,

My onco is Dr Victoria Blinder (pronounced blender) and i feel confident she will not overlook anything and cure me.

I'd be surprised if I can receive treatment via IV and will need a portacath. I told Dr Blinder getting a vein has always been difficult, and even when I was hospitalized at Yale they ended up having to take a vein in my foot. But I'm certainly willing to let them try.

The literature she gave me says with A/C vomiting in 4-6 hrs and up to 72 hours but she said they have come a long way with anti-nausea meds and everyone is different.

I'm encouraged you faired so well during A/C, particularly since she said the first 2 months on A/C would be rougher than the last 2, on TH.

She also said by my 2nd treatment all my hair will fall out. Did you find that to be the case?

What about fatigue? Was it manageable? Dr Blinder said the chemo's side effects have a cumulative effect and get stronger.

I made great time to the city until I hit the H Hudson. The I crawled  down toward the Hilton, at 53rd and Ave of the Amers, which ended up taking close to 2 hrs. But figure when I'm going for treatment I'll explore coming down the FDR and will call MSK to ask about available parking. Used to make it to my Dads on the upper west side in 1 hr 20 minutes from my house so am hoping I can get there in 1.5 hrs.

I was approached about participating in a study on chemo brain. I said yes since it's for a good cause and only involves cognitive testing.

Jeez, that wasn't something I had even considered and don't remember it being listed as one of the side effects. But also know from work I did years ago, chemo brain exists.

Hope you have a glorious weekend, .........it's supposed to be PERFECT! I spent many a happy summer on Fire Island and miss it terribly. Lucky you living so close to the ocean!!

Thanks for keeping us updated Eve.

I know that I felt much better when I had my treatment plan firmed up.  Seemed like the world quit spinning so fast.  But now you get to the next wobbly place -- what side effects that you'll have and how much they'll affect you.  I really hated that I didn't know how I was going to feel during chemo.  I was one of the few unlucky ones who never developed a good pattern that I could count on so I'd know if it was going to be a "good" day or "bad".  However I was doing my infusions weekly so it wasn't much time between IVs.

I'm surprised that MSK doesn't like to use ports.  I think they are really slick.  Once the incisions have healed then I don't see how they could be any more prone to infection than IVs.

Same response as I've gotten from 2 oncs concerning the pleo cancer cells.  Evasive.  Thanks for trying, tho!  I think it's the lack of study combined with the fact they are already throwing the tough chemo our way.

My DH has been with me at every infusion but I could have easily driven myself back and forth during AC.  However, with Taxol they started off with a benadryl drip which gave me a serious loopy feeling.  I was switched to oral but it would still get me pretty tired.  I needed him there to drive me home. 

Hi Everyone, Hope everyone is feeling OK and thinking positively.

I wrote quite a bit, and then lost it all so will have to rewrite again later.

I guess I was timed out of the board, and when I logged in again, my post was lost! :-(

Oh man - I haven't been able to drink alcohol for 25 years now (became allergic after over indulging one night) and now I have to give up chocolate and chips too??? - cancer sucks big time!

Eve..Thats great that you have a plan.I am sure a big load has been lifted for you,it does seem more feasable for you to get your tx close to home,and let alone parking expense in the city.Good for you!Will be thinking of you.

I am such a sweet freak,I have read that it might fuel cancer,but now i think our own saliva causes cancer:)

I wish you the best with the rest of your treatment, Eve. Cancer is the gift that just keeps on giving, isn't it? The best thing to remember is that there are 2 1/2 million of us who have/have had bc and are still alive in the US, according to the ACS.

As far as the sugar, whatever causes an excess of glucose in your blood stream spikes your insulin which drives the glucose into the cells, including fat cells which, in turn, provide storage for estrogen. That excess glucose can come from alcohol, honey, Pepsi, potato chips, brown sugar, raw sugar, anything high on the glycemic index. Any sugar is "okay" as long as it is accompanied by enough fiber to slow its absorption, as is the case with whole fruit. I don't think there is anything with enough fiber to tackle a can of Pepsi. Your typical sugary snack, (like chocolate, darn it) has no fiber to go with it.

If you like your chocolate over a large bowl of kidney beans instead of ice cream, your blood sugar might stay reasonably low. The problem is the great tasting stuff consists of magical combinations of sugar, fat and salt. Two interesting books on that subject are The End of Overeating and Breaking the Food Seduction. Food companies spend billions on developing those combinations and then marketing them. But, that is a whole 'nother subject!

If you want the benefit of locally grown honey, try locally harvested bee pollen, especially in the early spring. It always prevents my allergy headaches, probably in a homeopathic way. (Again, more of subject for a different thread.)

hugs, 

Sue

Anacortes Girl,

Can I ask where you are receiving treatment?

I was just diagnosed with PILC on 09/08/2010. Don't know how to set up my profile, but I am Grade 3 (8/9), 1.8 cm removed so far in excisional biopsy for diagnosis with positive margins since it is right up against my chest wall, no lymph node info yet. ER+, PR+, HER2-, only moderately responsive. Initial BRCA 1 and 2 testing negative despite strong family history so there may be other hereditary factors at play. A lot more I could say and I'm interested in meeting everyone on this board, but I'm particularly curious if you have any experiences with SCCA? I had a consult there with their team on Friday (9/24) and am trying to decide what to do next ...

Wow, I have found more information on PILC here than anywhere else, including my oncologist.  It is good to know that the stage and grade are more important than the fact that it is pleomorphic. 

 My story is that I am 44.  I have had a mammogram every year since 2005.  On May 10, 2010 my mammogram showed no problems.  On August 17 I found a mass and decided it was nothing because it came up about the same time I started my period and the fact that I just had a clean mammogram.  On September 27 I had a mastectomy of the right breast.  My dilema is this:  my breast MRI showed benign changes in my left breast from May to September.  I don't know how hard to press my surgeon for a biopsy of the area.  I feel like my ILC may have been missed on my mammograms and am worried the same thing is happening with my left breast.  What if I go through chemo only to find that I have ILC in the left breast as well?  

 I am scheduled to begin chemo on November 3.  AC every other week x4 and Taxotere once a week for 12 weeks.  The oncologist hasn't said anything about radiation so I assume I won't have to have it.  The BRAC, ER, PR and HER2 tests are still pending.  I hope to receive the results this week.  

You have no idea the relief I feel just knowing there are other PILC's out there to talk to.  I was beginning to feel alone.  Sue, I am in Panama City, only about a 2 hour drive from Pensacola.  I belong to a calligraphy guild in Pensacola and visit your area often. 

Please all stay in touch and continue to post.  I feel so much less alone!

SAMayoFL: I didn't have a mastectomy but a lumpectomy and I was also worried about the other breast but my oncologist said if there was anything going on there the chemo and herceptin would have probably taken care of it. I'm thinking about having an MRI to check the other one but will have a mammo and ultrasound this month first and then think more about it.

Sue

Rae -

The recommendation for radiation after a mx is wider than what you've mentioned.  My surgery had clear margins but size, multi-focal and number of quandrants involved all pointed to radiation of the chest area including the scar line, the sternum, the mammary lymph nodes and the supraclavicular nodes. 

SAMayo -

I would definitely ask your onc about rads.  Normally if there are more than 1 or two axillary lymph nodes involved then radiation is recommended.  But I doubt it would be the same 5 field tx that I was given.  Could be just to the axillary nodes.

Thank you all for your replies.  I am going to see the surgeon again this week and am going to talk to him about a biopsy of the left breast.  I pulled the report from the MRI and it said there were "benign proliferative changes" and that "several small axillary nodes are seen".  I feel like the surgeon is not putting enough weight on the fact that I have lobular carcinoma.  After reading your replies, if he does not listen to me this week, I am going to get a second opinion as well.

 I was diagnosed on 09/15 and had surgery on 9/27.  I didn't know until the afternoon of 9/24 that I would have to have a mastectomy instead of a lumpectomy.  Everything happened so fast.  If I had known then what I know now, I would have opted for a bmx.  

Sue, another thing we have in common is our name.  I am Susan.  I don't know how to send you my telephone number but would love to talk.  What doesn HIP at NOLA mean?

I was just wondering if this thread is so quiet because pathologist are not reporting Pleomorphic Lobular Carcinoma on the reports all the time? My first report reported it but my 2nd just indicated Grade 2 with no mention of pleomorphic. Just wondering out loud...