I dont understand why I need Chemo.

Options

On 16th July I had left breast mastectomy & LD flap reconstruction.

I have been told that my cancer was Invasive Lobular, non agressive. grade 2. 3.5cm, 1 of 8 lymph nodes showed tiny cancer cells 7 surrounding were clear. I have no cancer cells in my lymph or blood vessels. the whole cancer has been removed. My cancer cells are hormone receptive. HER2 negative. thats a good thing.

Why do i need chemo? Can I just be treated with hormones?

Advice please xxx 

Comments

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2012

    Have you had the Oncotype DX test? That would really determine if you need chemo or not. That said, you might need chemo becase some cancer could have escaped into the rest of your body. If it got from the tumor to even one lymph node, it has learned to travel. Doctors cannot guarantee that they got every single cancer cell. That is impossible. Also, your tumor was a little large. That may be another reason they're talking about chemo. Hope you figure it all out to your satisfaction!

  • Hortense
    Hortense Member Posts: 982
    edited August 2012

    I had an oncotype test with a score of 20 which is low intermediate, that together with the fact that micro cancer cells were found in two lymph nodes sent me to chemo. The doctor and I were concerned that cancer cells might have traveled farther. There is no way to know if your Lymph system is clear of them. I wanted to do everything possible to eliminate them, but I know that there are no guarantees.

    If you are concerned about losing your beautiful hair, look into using cold caps during your infusions. From other UK ladies posting here, I understand they are available and covered by your national insurance.

     Good luck! 

  • marjie
    marjie Member Posts: 1,134
    edited August 2012

    I would say likely tumour size and the fact that you had a positive lymph node are the deciding factors. Chemo is unpleasant but definitely doable - there are those who would disagree with me, but for my own peace of mind, I know after going through all the recommended treatments that I've done all that I could - I can't go back and say "what if..."

  • Litha
    Litha Member Posts: 11
    edited August 2012

    Yorkiemom & Hortense, thank you for your comments.

    No Im not aware that I have had an oncotype test.I shall be asking that question.

    The thing is I was told that I may need radiotherapy but i would not need chemo. The surgeouns then said that it was a 'grey' area so it was a shock when the oncologist said i need a 4 1/2 month course of chemo once every three weeks.

    I have thought about refusing chemo & going holistic but i have a six year old beautiful son & want to live forever!

    xxxx 

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2012

    Litha, you're so right, LIFE is the goal, especially when it includes a little one! My surgeon tried not to second guess my oncologist after surgery. The surgeon suspected I would need chemo, due to the 2 positive, albeit micromets, nodes. However, the oncologist opted for no chemo after I got a low Oncotype score. That's why I mentioned how important the test is. I'm not sure if it's done routinely in the UK though. 

  • curveball
    curveball Member Posts: 3,040
    edited August 2012

    @ Litha,

    I was told on another thread that the Oncotype test isn't available in the UK. There's another test called Mammaprint that may be available there, and give you the same type of guidance about how helpful chemo is likely to be in preventing a recurrence or spread. I agree with marjie that probably the size of your tumor and the positive lymph node are the reasons you are being advised to do chemotherapy. My tumor was smaller than yours, also grade 2, and I had a 1 mm micromet in one sentinel node out of 13 nodes examined. I think based on tumor & node status alone my oncologist would have at least suggested chemotherapy, and that plus my borderline high Oncotype score was enough to convince me chemo was the prudent course of action for me.

    You asked if you can be treated with just hormone therapy. The answer is yes--but is that really what you want to do? I think it was someone else on this board who suggested that if faced with the necessity of making a decision when you can't get enough information to decide based on the facts alone, you ask yourself "what course of action is the least likely to produce regrets, regardless of the outcome?"

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • Litha
    Litha Member Posts: 11
    edited August 2012

    Hello Ladies,

    Thank you so much for all of your replies. I feel like i am not alone anymore :) I am trying to let go of the fear.

    Day, the hormone treatment i will go on for 5 years is tamoxifen. My tumour was eastrogen sensitive.

    Curveball, I will ask about the mammaprint. I think I am getting my head around having chemo, I have an appointment next week to test my heart to make sure it is strong enough for the chemo & i will request the cold cap.

    Thank you all for making me feel normal again xxxx 

  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2012

    Litha, I had no choice as I was Stage III.  Chemo is rough, but you can make it through. 

    My friend is going through chemo now - she had a 2 cm tumor and 2 nodes.  She went to MD Anderson in Houston, TX the number one cancer hospital in USA.  They told her she should do chemo - and she is 65 yrs old.  She is doing it and now glad she did.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2012

    My surgeon never mentioned chemo either (apparently this is not rare); so I was also shocked when that was the recommendation of the oncologist. The size of my tumor and a grade 3 tipped me into the chemo recommendation. I imagine the size, the fact that you were node positive and your age will all make you 'want' to do chemo.....as you never want to have to do this again. Chemo wasn't fun, but it was for only a short period of time. Some people have lots of trouble with the anti-hormonals, but I have not. I will be finishing up 5 years next month and have felt great throughout. Best of luck!

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2012

    Litha, I just wanted to mention that everybody's reaction to tamoxifen and Aromatase inhibitors is different. I've been on Aromasin for 8 months and feel fine.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited August 2012

    Have they changed the protocol on Oncotype testing?  Last I heard it was only for node negative women (also ER or PR+ and Her2-), THOUGH, I believe there may have been some tweaking for limited node cancer evidence.  Actually, I thought if in the nodes, always chemo, and that is why they don't use Onco testing.

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2012

    Kam, yes they have changed it to 3 or less positive nodes.

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2012

    Litha, as well as the awesome support and information you've received from other members, the Chemotherapy section of the main Breastcancer.org site, particularly the article Who Gets Chemotherapy? may help you.

    • The Mods

  • LtotheK
    LtotheK Member Posts: 2,095
    edited August 2012

    It is unusual for hospitals (still) to offer Oncotype to node-positive patients. 

    No one can tell you definitively what the best solution is simply because so little is still understood about the function of chemotherapy.  For many of us, it is indeed "overkill".  But medicine just hasn't parsed that with such a fine point yet.  The studies are starting to come in:  Taxotere in certain settings, for instance, does seem to work more effectively than other chemotherapies. 

    At my hospital, which is NCCN ranked, there is a checklist for chemo.  Node positive, high grade, tumor size, LVI, type and histology (triple neg, HER2) are all "yes" for chemo.  I was high grade. Despite a low Oncotype, I was advised to do chemo.

    I don't regret my decision at all.  I also am deeply aware that we did the best we could with what we had available, and I certainly hope the next generation will have better choices than destroying my natural menstrual function and general health in the chance the treatment may ward off recurrence.  It was the best we had, but as a mature person, I don't consider that "good".  I don't even subscribe to "hit it hard" or "do everything possible". Some studies indicate chemo is ineffective in a lot of circumstances, and I may have been one of those who didn't benefit.  Again, they just don't have it figured out that clearly yet.

    Doctors are trying to keep the cancer from being fatal.  That's why you "need" chemo with your node-positive status.  Someday, they will be able to understand whether that is really the case.  In the meantime, I'm a huge believer that anything "natural" strong enough to kill cancer, the most elusive of diseases, IS chemotherapy.

    Edited to add:  you can do Cancermath.net to look at your benefit from chemotherapy given your profile.  One serious thing to consider, though doctors aren't sure why I believe:  a combined treatment approach yields better results than the individual sum of the parts.  (Chemo + radiation + hormonal treatment) Another important thing to remember:  the hormonals can't be tolerated by a lot of people, and there is concern they, too don't work in all scenarios.  If you go through this without chemo and you can't tolerate the hormonals, you could really be in a pickle.

  • curveball
    curveball Member Posts: 3,040
    edited August 2012

    @Kam170, I got the Oncotype test through signing up for a clinical trial studying use of the test in node-positive women, but my test results showed five-year disease-free-survival curves for both 1-3 positive nodes and 4 or more positive nodes, so there must be some statistics already for Oncotype use in node-positive women. IIRC, though, my onc said he could request the test and see if it would be covered, even if I didn't participate in the clinical trial. As it turned out, my score was outside the eligible range for the study, but I'm glad I found out what it was. Knowing my score made it a lot easier to decide about chemo.

  • Racy
    Racy Member Posts: 2,651
    edited August 2012

    Litha, there are many different chemos and durations. While chemo is probably indicated in your case, there are different combinations so you may want to seek other opinion/s as to the chemo you would have.



    I had six cycles of TAC chemo. My tumour was also lobular with isolated tumour cells in two nodes. This may be a shorter course of treatment applicable to you.



    Best of luck.

  • liefie
    liefie Member Posts: 2,440
    edited August 2012

    Litha,

    I was IDC stage 1 grade 1, tumour was 1.8. cm with micromets in one node only. Received 4 cycles of Taxotere and Cytoxin. It was rough to say the least, but I feel good knowing I did all that I could. You will be okay.

  • msphil
    msphil Member Posts: 1,536
    edited August 2012

    I had L mast, was informed I could have lumpectomy but i was in process of making wedding plans,so most thought I should have went for lumpectomy but I wanted ALL chances I could get so I could live longer, so yes I would do chemo if it gave me more chances to be HERE, I also did reconstruction but my body rejected the implanted expander caused fever etc, so I have worn a prothesis fro all these yrs and I Thank God I,m still here,18 yr SURVIVOR(Praise HIM).  msphil idc, stage 2, 3 nodes, L mast chemo and rads and 5 yrs on Tamoxifen.  PS give yourself all the chances you can 

Categories