Why don't all invasive need chemo

Lillp07

I haven't seen my oncologist as yet but wondered why all invasive ductal cancers don't need chemo? I thought it was the invasive part was needing the chemo but maybe it's because mine has vascular invasion is why I need chemo.

angelia50

I have invasive and its grade 1. My doctor did not recommend chemo because she said its not very effective against low grade cancer and I will get a bigger bang for my buck with Arimidex.

Lillp07

Angelia, did you have vascular invasion?

angelia50

I do not believe so. I've read my reports and don't recall seeing that. Mine is IDC Stage 1A, Grade 1 and ER/PR positive just like yours. I had feared chemo but when she said she didn't recommend it, then I felt almost worried that I didnt' have it. But I have read about the studies for the grade 1 and I go to a breast center and it was reviewed by a tumor board so its not all just one doctor reviewing the records. It seems to vary, I even have a friend with DCIS whose doctor tried to get her to do chemo and that seems really odd. So are you having radiation? I would have had to have radiation if I had done the lumpectomy but the placement of my two tumors and one papilloma made mastectomy necessary.

Lillp07

I'm not having radiation as I am having double mastectomy. Surgeon said I have lymphatic invasion therefore have to have chemo I see oncologist on Tuesday. So upset and anxious about it all.

Lillp07

I havent had Oncotype test as yet. It will be done on Tuesday when I see oncologist.

Lillp07

thanks Robo. The wait is sickening. . The surgeon has said chemo is for certain. He said to mop up the escaped cells. There has to be more to the story.

sandgar

My oncologist never suggested chemo or even tamoxifen because she said I had no breast tissue after bilateral bmx. Only yearly routine visits with primary. This should be reassuring but it actually scares me. No oncotype done at least noone mentioned it. Genetic testing was done.

Lillp07

sandgar did you have vascular invasion?

Nancy2581

Lillp07 I had vascular invasion and I am doing chemo. I also had one lymph node positive. I am also grade 1 and keep hearing things about chemotherapy not so great for grade 1. LVI scares the crap out of me so I just want to do all that I can. My MO also said that chemo is to mop up any rogue cells out there. I didn't want to do chemo either, but it hasn't been as horrible as I thought.

Nancy

Oh and I did not have the oncotype test either. I asked and my MO said because I am premenopausal the oncotype test for that group is in the clinical trials (with positive nodes). She said she could put me in the trial but she was afraid I would end up in the group without chemo. I do trust my MO so here I am doing chemo.

Lillp07

Hi Robo. I live in Australia. I'm with the top cancer centre in the city. I'll be keen to get more information on Tuesday.

Nancy the LVI scares me too. I'm so pleased your chemo isn't as bad as you thought. How long are you doing it for?

Hopeful82014

I'm doing neoadjuvant Femara with a very strong response so far. If the nodes are clear at surgery (after 6 months on Femara), I probably won't need chemo. Of course, the final pathology is what we'll rely on. However, from the beginning my MO has made it clear that chemo was not an absolute, despite an aggressive tumor and positive node.

I am amazed at how well the tumor and node are responding to Femara and it's great to have this information NOW rather than taking it for 5-10 years and wondering if it's doing anything.

Lillp07

Hopeful, that's fantasic. I'll look up Femara.

Racy

Lillp07, Oncotype test is not standard in Australia. You can have it done but it would cost about $4000. 

You could ask to see two oncologists. It doesn't hurt to get a second opinion when making such a huge decision.

Keep us posted.

ps I'm in Brisbane. This is an awesome site!

Trisha-Anne

Hi Lill

Where in Australia are you? Oncotype testing isn't routinely done in Australia, I'm pretty sure you have to come up with the $4,000 yourself to have it done.

I had vascular involvement with my IDC tumour, and even though it was 2cm with one node involved and a grade 3 chemo wasn't a certainty until the HER2+ result came in. If I'd been HER2 negative, I wouldn't have had chemo.

Chemo doesn't usually work very well on a low grade tumour as it works best on fast dividing cells, which is what makes the grade higher.

You might want to pop into our Australian Sisters thread to talk to more Aussie girls who may have be able to help you once we know what city you are in.

https://community.breastcancer.org/forum/138/topic/762058?page=334#idx_9994

Trish

xoxo

Racy

Hi again Lil. Another reason to get opinions from more than one oncologist is that there are several types of chemos and the number of treatments recommended (4, 6, 8 or more than 12) also varies.  If you do have to have chemo, you will want to choose the one that will work best for you and cause the least side effects!

Nancy2581

hi Lillp07 I started ACT chemo July 22nd. I did AC every 3 weeks and now weekly taxol for 12 weeks. I will be done December 30 th. I just want to do everything possible so hopefully I never see this beast again.

Nancy

Lillp07

I am on the Gold Coast in Queensland. If the doctor think I need the oncotype test I'll get it for sure.

I didn't release I would need to make choices and decisions. I thought it would be "this is what you need" and I would do that. I think I need to do more research. I'm lucky my brother in law is a cancer surgeon but he's only just starting out and been in his residency specialty for 2 years. I'm asking him lots of question.

ThinkingPositive

I had IDC, stage 2a, grade 3, ..lymphovascular invasion and one node positive out of 17 with encapsulated extension in addition to the dcis . Had a mastectomy thinking I only had dcis and two very small spots that showed up on MRI. (which we were not sure were anything until after surgery) Then I got the pathology report. What a shocker. I was told my oncotype would probably come back high, and I would benefit from chemo...possible radiation afterwards and then 5-10 years hormonal drugs. The invasion part scares the daylights out of me. I was given the choice of Standard of Care ACT...or TC. The ACT comes with the the possibility of the heart side effects/lukemia... which also scared the daylights out of me. Hoping that TC is agressive enough chemo to get rid of any cells out there.. I asked alot of questions...but I still have doubts..

ThinkingPositive

TrishaAnne

Which chemo regimen are you doing? Your diagnosis is similar to mine except I am HER2neg... but was still told I needed chemo. Scary how different treatments are for almost similar diagnosis...

Trisha-Anne

Thinkingpositive

I did my chemo four years ago - all finished now!

I'm in Australia so I did FEC-D plus Herceptin. The D is Docetaxol or Taxotere. That seems to the standard of care here as well as the UK and Canada. Having said that my boss had almost the same dx as me and is going to the same hospital as I did but is having TC plus Herceptin, so things change a little bit with different oncs too. Interesting her chemo is T rather than D - she did Taxotere too. Her onc didn't want her to do the A part as she was having Herceptin which has its own heart damage risk.

I think Taxotere is a pretty aggressive chemo so will rip into your cancer.

All the best (((hugs)))

Trish

xoxo

 

Lillp07

I have received my chemo information. I am having 6 sessions of FEC 2 weeks apart starting 5 January. I am having a port put in. Scary.

Lillp07

Thank you Kay, do you think I'm dreaming if I think I will be able to work some throughout treatment? I'm a rep, so it's easy work just lots of driving

Trisha-Anne

Lill

I did FEC and found it fairly tolerable. The week of treatment was the worst. I would have my treatment, work the next day and depending on how I felt worked most days, but only a few hours a day. My biggest problem was diarrhoea, so had to be near a toilet all the time. Some people have the opposite problem and have constipation. You won't know until you do a round how you'll react.

Make sure you take all the anti nausea meds they give you, even if you don't think you need them. It's more important to stop the nausea before it starts, than try to stop once you start throwing up. I never threw up once. I did feel a bit queasy from time to time, but never actually threw up.

Food didn't taste great and I got really tired, but apart from that (and the big D) I didn't have too many problems.

Once you have your first treatment, you'll get an idea of how you will react to it and will be able to plan your work around it a bit better. Make sure you drink lots (and I mean lots) of water with FEC. The E part  (Epirubicin) will make you pee pink for a while and it's important to flush it out of your bladder.

I bought a tube of Emla cream from the chemist. It's a numbing cream and fairly expensive, but if you put it on about an hour (two is better) before your treatment, you hardly feel the needle they use to access the port.

I came through FEC pretty well and if I had to do it all over again, I'd do FEC without any misgivings. Don't be scared about it - I know that's easy to say - but really it's not that bad. I was soooo stressed before having my first chemo treatment that I had a seizure as they were accessing my port. When I finally got my first treatment two days later it was (almost) a non event.

Take something to keep you occupied while getting treatment, FEC takes a long time. I think I was in the chair around four hours or maybe five.

Trish

xoxo

Lillp07

What an uplifting post Trish. Thank you so much. I so needed that. I get queasy from everything. Cars, rides, cruise ships. I'll take any anti neasea I can get. I went to a chemo seminar today and they gav me the emla gel for the port.

Lmcqueen

Sangar,

Are you hormone positive? If so they should order the OncoDX/Type which will "help" determine whether or not you would benefit from chemo. Because 10% of those with ER/PR + IDC may or may not benefit from chemo the Onco test further studies the genes involved in your cancer. It is also my understanding that if we are hormone positive we have to be treated with Tamoxifen or an aromastase treatment because the estrogen in our bodies can attach to the cells and cause problems

http://www.breastcancer.org/symptoms/testing/types/oncotype_dx

Blessings2011

A couple of notes for those just receiving diagnoses...

Having a BMX does not mean that they get all the breast tissue. In fact, it's impossible to get ALL the breast tissue, as it can extend up as high as the collarbones.

Having a BMX does not mean you won't have radiation. It all depends on where your tumor(s) are located, and whether or not your surgeon can get clean margins. Had my tumors been closer to my chest wall, I would have received radiation after my BMX.

I had multifocal IDC (Stage 1A), but my nodes were negative, and there was no vascular invasion.

Even though the IDC was multi-focal (in more than one place), the largest of the tumors was 1.5 millimeters, and the smaller one was half a millimeter. This is quite tiny when compared to tumors that are measured in centimeters. For all these reasons, my MO ruled out chemo, and never even offered me the Oncotype test. She just prescribed five years on Arimidex, as a preventative measure in case any of those pesky breast cancer cells remained.

For those who have started treatment: wishing you all the best!

Lillp07

This really shows how different all our diagnosis are. I am hormone positive.

wrmbrownie

What does LVI mean?

SpecialK

Lymph Vascular Invasion. When noted on your pathology report it means that lymphatic and vascular development is seen within the sample and this potentially shows a pathway for the spread of cells from the tumor.

wrmbrownie

Thank you!