DX Score of 15 with LVI; cant decide to do Chemo or not
I am so confused right now with the decision I have to make!! I had a full matectomy 3 weeks ago, 0/6 nodes, 1.9 tumor and it was all looking so good; I found out I dont need rad and was getting really happy about possibly not needing chemo. Then I went to my onco Dr and she gave me my DX score, more good news, came at 15. But then she says that the fact that I had LVI (and after calling the lab, she says there was quite a bit of it) that I have to decide on chemo. She says she is leaning towards it and my surgeon shares her opinion.
I am going to get a second opinion next week and I haven't stopped researching since. Anybody now if me DX score considers LVI? I am 37 and have 3 young children, I want to fight this with all that I have, but at the same time, I am affraid to cause more arm to my body by doing chemo thant if I didn't. I dont want to trade BC for leukemia 5 years down the road. What is my risk for chemo induced cancer? I will be taking tamox and that's more risksfor other cancers.
I am just so confused. I keep going back and forth between "ok, I've meade up my mind, I'll just do it, this is my one chance at fighting this" and then "I wont do it, it's not worth all the risks for a waht? 1% chance after considering all bad that chemo could bring".
Anyone else in the same boat or with wise words and knowledge?
Comments
-
Sorry I can't help too much but one thing to consider is the mix of chemos being recommended and how many cycles. Did your current onc tell you this? Be sure to see which chemos both doctors giving opinions are proposing.
Some chemos are harsher than others and you can read about potential side effects of each. I believe the chances of other cancers are very small and many women have only mild side effects. There is a lot that can be done to minimise side effects.
No one wants to do chemo if they can help it and it is a hard decision for someone with stage 1 cancer.
You may even need a third opinion, or I have read of some ladies' cases going to a 'tumour board' for discussion. Maybe you could ask about that.
Wishing you well in making this decision. -
Besides getting a second opinion, you might ask if your case can be presented to a tumor board....That way, you will get many opinions. Good luck!
-
That is a tough decision. My score was 16, no nodes, no LVI, but a larger tumor (just over 4th). My MO was on the fence w chemo, and got the opinions of her colleagues... She recommended 4 TC, because of my "young age" 43, my otherwise good health, the size of the tumor, and her practice uses "11" as a cutoff in otherwise healthy, young women.
I have 3 young kids and did everything in my treatment aggressively.
One Dr that I spoke to about concerns with chemo and the possibility of future cancers had a really good point. He said "but, you have a "known" cancer now, let's eradicate that".
Chemo was not a walk in the park, but, I'm thankful that I did it, and that it was offered to me. It has definitely helped me psychologically in this battle, to know that I left no stone unturned. -
I love these boards, there is so much info and support on here.
My Dr said it would be 4 chemo treatments on a period of 3 months. I forget what medecine exactly, but there where 2 of them. I will ask for their names again next app.
This tumor board thing is new info to me. Is it usually in every hospital/cancer center? My husband called today and they told us that the Drs meet once a week to discuss all patients and that therefor my case had already been discussed. We weren't satisfied with that answer as when I did see my Oncologist after mastectomy, she looked like she was unsue about what I should do and I didn't get the feeling that she had discussed my case or though about it in depth. I will be glad to see another Dr next week. I have a list of questions and I hope that after I get answers, I can feel like I am ready to choose if I want to do chemo or not.
It does make sense to treat what is there rather than to think of what might be. I will keep that in mind when I make my decision. I think that I am leaning more and more towards chemo because of that LVI and because my report has something about a small focus of a micropapillary pattern. Anyone heard of that?
-
My non medical opine is that if I had LVI, I would have done chemo no matter what my Onco score was. I had decided that due to the fact that if cancer cells were found in my vascular system, I could not fathom skipping Chemo. You are ER and PR+ so obviously antihormonals are in your picture, but for me, LVI or a pos lymph node would have caused me to choose chemo.
While its a tough decision, thankfully you have the choice and can say yes or no, rather than the choice being made for you.
I agree with the others, get a second or 3rd opine from an Onco , any goood doctor will respect your decision to get other medical opinions and you'll feel safer in the knowledge. I had 3 Onco opinons before I decided.
Good luck to you , sending you wishes for strenght as you go through this.
Bevin
-
I had a score of 17 and had some LVI. I was 45 at dx with a 4 year old son. I was grade 2. My tumor was 1.4 cm. I was also ER/PR+. We have fairly similar situation. I got two opinions on chemo. One MO said no chemo and the other said chemo. Ugh! I had to decide. I wanted to be as aggressive as I could so I did the chemo. I had 4 cycles of TC and was done in 9 weeks. I used cold caps to keep my hair. I have no regrets with my decision. I know I have done everything possible to beat this for my son and family. Feel free to PM me if you have further questions. I don't mind. Hugs!
-
I also had LVI with an Onco score of 16. My cancer was a little more advanced than yours and it is also ILC which can be aggressive. I opted out of chemo after talking with 3 oncologists (one a very well respected integrative oncologist.) I have been on Tamoxifen for 1.5 years and can only say - I hope I made the right decision. It's tough but you are wise to ask questions and look for additional opinions. You can't be too informed! You should also check out Cancer Math at: http://cancer.lifemath.net/
-
I am glad you are doing well :-) I agree with yu, you cant be too informed. I get scared when I read some of the stuff but then I take a deep breath and remind myself that I need to make a well educated decision. I too will be taking Tamox. I am not sure when that starts. After chemo (If I choose to have it), I imagine?
Well, I saw my onco dr again today, the same one. I wanted to ask a million questions. She wants me to do chemo, she really feels it gives me an extra 5% because of LVI and that's not a neglectable number. Most importantly, I am starting to feel it will help me find peace of mind and I think in the end, there is not really a black or white answer in our situation... I think it's what we can live with. I want to be able to live without fear and I think chemo can help me with that. She is recommending 4 rounds of chemo ( docetaxal & cyclophosphamide... anyone else?)
I will still get my second opinion next week. I kinda hope his is the same as it would really get me all confused again ;-)
One step at the time... one foot in front of the other, right? Not always easy, but I am trying.
-
I have had the same questions as well and have had a hard time trying to research it and find answers. I have stage 1 IDC, grade 2, hormone positive and have LVI (multifocal)but negative nodes. I had a bilat mast with reconstruction the end of april and started chemo in july. I am half way done with the chemo (4 cycles of AC then 4 cycles Taxol) and am doing ok so far. I have had side effects but am dealing with them as they come. My other rec is that I also get radiation and I am so nervous about radiating my breast with an implant and the side effects and long term effects of radiation. I finish chemo 10/1 so have time to think about it, but am wondering if anyone else had these recommendations? I'm only 37 and have young children and don't want to make a wrong decision as I want to be as agressive as I can without compromising too much of myself. I can understand the use of chemo with lymphatic vessel invasion, just don't understand the use of radiation too.
-
Camillia, it sounds like you are doing the right thing getting a second opinion and your current onc's recommendation also sounds reasonable.
-
Tracey, I too had multifocal tumor, 2 tumors and satellites around each one. That's why I had a mastectomy. I never regret my decision. The pathologist said that there was quite a bit of LVI, nothing that was hard to detect. He could see it on multiple slices. Although they dont know for sure what that does as far as prognostic, I am starting to feel like I just want to put all the chances on my side, so I will most likely go with chemo. I too am 37 and have 3 small children; I want to be here and see them grow.
I was personnaly told no radiation but I am starting to understand that there is no clear paths, just personnal choices and what you can live with. I was encouraged throught these boards to ask questions, get second opinions and in the end, do what feels right to you :-)
-
I think I read that on another thread and it really had me thinking. I just love these boards, they have been so helpful in so many ways!
-
My Onc said chemo was a must for me because of LVI, no matter what the score. I did not get a second opinion, accepted his advice, and did the chemo.
-
I don't know a whole lot about LVI.......is that more concerning than positive nodes?
I had a pos node but no LVI, I did not do chemo with a 22, though if someone wanted to do it at that score it would be reasonable.
The issue is really whether the chemo will benefit you....will your cancer respond to it?
15 seems pretty low to me, but it's not 11, true.
I would never tell someone what to do, but I would ask why the LVI makes that cancer more responsive to chemo.
Also would CMF be an option? It seems to be common for women who are on the bubble, and it has milder side effects.
Good luck what ever you decide, there are a million factors, and it takes a while to figure it all out.
-
LVI vs node is not about the type of cancer's responsiveness of one over the other. It is about the higher probability that it may have traveled further out into the body through the bloodstream or lymphatic system instead of caught and stopped in the nodes. In really simple terms, chemo is to get to cells in distant areas of the body before they take hold.
-
I had an onco score of 20, negative nodes and no LVI. I did have micropapillary carcinoma which tends to be more aggressive. For that reason I went with 4 rounds of Taxotere and Cytoxan three weeks apart. It certainly wasn't fun but it was manageable. If I had it to do over again I would do the same thing. No regrets. For me, I had to know that I did everything I could to fight against this horrible disease. Good luck with your decision!
-
So it is decided; I will start chemo at the end of this month. We went for a second opinion and he too recommended chemo. He saus that it is pretty much standard with LVI at my age to recommend it and after all my research, I do feel like it is the right thing for me. I was hoping that I would find peace of mind and I did... I am thankful for that. Thanks for sharing your journeys... reading your stories has been a great ressource and inspiration
-
Not that my opinion matters but I'm glad you chose this route. The LVI would have automatically made me select chemo. Good luck !! Stay well!
-
Thanks Bevin
-
I am glad you chose chemo as well. When cancer cells have developed pathways through the lymph and blood stream. it is a sign that it could have had a few cells escape (or not) so the safe way to go is the way you are going. Otherwise, you tumor profile is excellent prognostic factors!
-
I had chemo because of my LVI situation and I have become a bit of an LVI obsessive since dx.
I discussed the significance of LVI with every onc I met and it seems that, in all honesty, they are not terribly sure how to quantify LVI as a prognostic indicator. There are many women with extensive LVI but neg nodes. Conversely many women with +ve nodes and no LVI. One onc said "We think it is better not to have it than to have it but we cannot say exactly why - it is all guesswork." My surgeon explained in simple term's that they now have extraordinary microscopes that can easily identify the presence of LVI in tumours but they really don't know the significance with regard to recurrence risk.
-
Hi all - my tumor was 1.8cm, grade 2, node negative but with LVI. The path report also says angiolymphatic invasion is positive. My Oncotype score was 19. When you're going through all of this, it seems overwhelming and I just trusted my onc. Looking back (it's been two years now), with those stats, I think I should have at least gotten a second opinion. I remember being so relieved that I didn't have to do chemo, but now and forever I will wonder if that was the right decision. Can't go back and re-do obviously, but I do tend to obsess over the LVI now that I'm so much more educated. But especially as we have seen on these boards, there are no absolutes. All the best to everyone.
-
Camilla,
I am late to this conversation. I am glad you made the decision to do chemo with LVI. You never want to second guess treatment later on down the line when it may be too late.
I did chemo in 2005/2006, it was tough but I never 2nd guessed my decision.
All the best with your treatment! -
Just come across this thread. I am meeting with an oncologist next week to discuss possibility of chemo. My BS seemed to think it would be a close call but given the size of my tumour and the 'extensive' vascular invasion, I'm already thinking that I want to do chemo despite the fact that until a couple of days ago I had not been expecting it to be part of the plan.
I was diagnosed nearly 3 months ago and have dealt with it really well. Had major surgery, no real problems. But since I got my pathology report I have been worried sick and really demoralised. I wasn't expecting such a big tumour and it's all I can think about. Everywhere says how important a prognostic factor size is and I can't switch my brain off from worrying.
How are you getting on with your chemo Camillia? -
Hi. I just came across this thread as well. My Onco score is 23, I have LVI and family history. I meet with my MO next week. I'm 55 years old.
Anybody with some input for me? It is a very tough decision. So far (before Oncotype test, which my MO didn't order, my BS did because it came up in a conversation...) my MO was emphatic about no chemo.
Thanks and I'll stay tuned.
-
LVI was one of chemo green lights at my hospital. Oncotype was only part of the equation.
I got three, not two opinions as a cancer patient diagnosed at 39.
-
Omeggo, I see you're from FL too! I sent you a PM.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team