Stage II w/Lymph Node Involvement
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OK, at least now after the meeting with my surgeon I think I understand those secret codes you all have in your diagnosis. So mine is IDC, , 3 sm, Stage IIB, Grade, I think, 2, 2/15 nodes, ER+/PR+, HER2-
The doctor said that I might not even need chemo and as far as radiation goes I might not even need it too. Although I am in a grey area with the radiation. I will be 50 in 2 weeks btw.
Jsu wanted to share.
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Alsu -- with 2 positive nodes that means the cancer has travelled from your breast (original site) into your lymph nodes. Have you seen an oncologist about these results or just a breast surgeon? If just a breast surgeon, I urge you to get the opinion of an oncologist and a radiation oncologist re: the question of chemo and radiation. Get as much info as you can about the best treatment possible.
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Thanks, Lilah. Yes, this is the next stage - to see an oncologist and a radiation oncologist, these are being scheduled. So you say that a breast surgeon opinion could be wrong? Wow ...
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Hi Alsu, I used to live in Anchorage looooooong ago. I wouldn't think your breast surgeon is necessarily wrong. Surgeons just have a different focus. I know my surgeon also thought I might not need chemo (I had one positive node). The Oncologist specializes in a different focus and knows all the statistics about possible recurrence. It is their job to try to make sure this beast doesn't return or show up again later. Get ALL the specialists opinions so you are completely informed about your options. There is a great site which helped me look at options logically called cancer math. Just google cancer math and you will find it. When you have more info, you can plug in lots of things (chemo/no chemo/different chemo or hormone therapy/ no hormone therapy). It will then calculate the benefit in your projected lifetime with different choices. Best of luck!
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What DesignerMom said
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Thanks!
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wow...when I was deciding about 9 months ago, I was really out on my own about considering no chemo...now I see many women with similar dx are considering the same thing...the field really evolves quickly!
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Hello All,
My first time posting anything! I just got my results from my lumpectomy a few hours ago. The surgeon was able to get the tumor and clean margins. The report from surgery said that all 4 nodes removed were clean....the path report today said there was minimal traces in first node and 2,3, and 4 were clean. I will be 41 later this month and I have 3 sons 17, 16, and 9. My husband and I were in the process of separating prior to diagnosis - we are still, just trying to figure out how.
Because the tiny traces were found chemo is on tap. Her2 has not been determined yet. I am beyond scared of chemo. Surgery didn't scare me, I'm ready to jump off a bridge because of chemo....I wish someone could help me. I have never felt so desperate.
I will be meeting with my oncologist on Monday as well as my surgeon to discuss treatment.
Do I really need chemo if they got the tumor out with clean margins and the node only has minimal traces????
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not if your oncotype is low....
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I too was scared of chemo at first, Jag, but it was very very doable. They give you very good drugs to counter the side-effects of the chemo; never did I feel nauseous. Yes, I did feel tired and sure, my hair fell out, but I found myself reacting to that so much better than I had expected. You will find all sorts of support on this site if indeed your doctors feel chemo is needed. Good luck!
Anna
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I had a micromet in one node and had an Oncotype test that scored 17. I chose no chemo.
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Jag, the worse part that I found, in all of this, is the fear of the unknown. Chemo is definitely "doable". With the information available here, I was able to work full time at a very demanding job right through it. Many do not have the horrible side effects of yesteryear. Are you going to feel like jumping to the moon? Probably not. Are you going to loose your hair? Depending on the protocol, very probably. You will find out after the first couple of cycles how it affects you, and what your good days will probably be. You have the support of many. Don't be afraid to ask for assistance and, in the case of a side effect/reaction, contact your onco clinic - there are meds available to make you feel better. Courage, girl. The weeks fly by!
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Jag -- the Her2 test is key. If you are Her2 positive you need Herceptin and if you need Herceptin you need chemo as studies show that Herceptin works better in concert with the chemo. Cookiegal is right, though, that you need an oncotype test to be conducted (if you are Her2 positive, Oncotype does not matter -- in fact it is not used because of the fact that you MUST have chemo if Her2 positive). Your oncologist will give you info, I am sure; ask him/her if an oncotype has been done and, if not, request one. A low score means that chemo would not significantly lower your chance of recurrence, basically.
I know -- for me -- seeing my Onc was the most helpful step in the process (surgeons don't really tell you much except about cutting you
If you do have to do chemo, don't worry. There are great drugs now to help with SEs and the worst thing that happens is you lose your hair, which grows back. I too found the thought of chemo terrifying but now that I've been through it I have to say the terror OF it was far worse than the chemo itself.0 -
Lilah's right. The HER2 status is going to be the primary decision maker. Once that is determined, the oncotype score will be next (but remember that it is only done if you are HER2 negative).
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Jag,
I have been in Chemo since April and will finish up in September. It has been a long road, but I have managed extremely well. My biggest side effect was being tired, and then hot flashes. At the beginning my biggest obstacle was my fear of the unknown. I was terrified the day of my first treatment and then absoulately stunted at how well I did. I know that everyone's experience is different, but there are many drugs available to get you through it if you decide to do Chemo. I am 51 with 4 children aged 7, 9, 11, and 13 and they, and my husband, were a key factor in my willingness to do whatever I could to fight this. Talk it over carefully with your family and doctor and I am sure you will make the decision you feel is best for you. Remember the final decision is yours and lots of women are here to support you with whatever choice you make. Best of luck.
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Gals, I should know better than to read these posts before going to bed! All these grades make me crazy! When I see my Onc in November, I am going to insist he let me know what grade I am to see if I passed or failed!
Warrior 517: New Orleans was my hometown for most of my life before Katrina turned my life upside down. That's where I was diagnosed but my docs didn't feel it was important to explain anything to me. If I hadn't found this group, I wouldn't even know about stages, grades etc. Welcome to the group and thanks for sharing that great poem!
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Looking back at your info, the fact that you are pr negative might make a difference, I'm not sure to be honest.
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Hello everyone, This is only my third attempt at posting. After finding this thread Stage 11 with lymph node involvement, I feel I have finally found where I belong on this website. After reading quite a few of your previous postings on this thread, I am feeling really gutted by the fact that it appears that you mostly all have done chemo. I was diagnosed just on 3 years ago and ended up having my ovaries out, instead of chemo as I was told it was a very good option for me. At the time I did not have the time to research and was guided by my doctor, however now I am feeling totally sick to the stomach, as the more I read, it would appear that chemo should have been undertaken. The sentinal node was positive and I had a total of 30 glands removed, so as you can imagine, ended up with lymphodema within 24 hours of my second surgery and continuing. Had 3 surgeries in total over a 3 week period. Am currently taking Femara, however that combined with no ovaries, I have been really suffering for 3 years with every side affect listed on the Femara packet. If there are any women who did not have chemo, and are still travelling well, I would appreciate hearing from you, as I really need a bit of good news to cheer me up. I have found the depression during the last few months hard to take, especially when I am reading that I probably did not take the best option for treatment. You ladies in America are lucky to be able to undertake the Oncotype test, we don't have that available to us here in Australia, and are flying blind in that regard, and rely on our medical specialists to advise us what to do.
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Hi Aussieched,
I took the Oncotype Test (two postive nodes) and my score was 17. My oncologist said the chemo could be slightly detrimental to me so I choose not to do it. I'm comfortable with the decision.
I'm sorry you are having so many side effects from Femara. Have you thought of trying another AI or Tamoxifen? I am postmenapausal and tried Femara but couldn't tolerate the side effects. My onc switched me to Tamoxifen. I was doing pretty well on it but now have insomnia so he may switch me again if we can't get the insomnia under control. If your onc doesn't feel you should switch have you thought about talking to him about an antidepressant?
I hope others with postives nodes that have not had chemo will post. I do think there are many of us.
My best to you.
Jacqui
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Aussie your medical pro's might have been ahead of their times.. I think now the movement is away from chemo since it is soo harsh on the body.. and NO ' what does not kill you does NOT make you stronger' lol re: chemo.
On the other hand I was not given the oncotype test (although 3 years seems recent it was not widely given to lymph positive gals.. ) and got the harshest chemo ...sometimes I am thinking that I did put my body through needless stress..
Crap shoot either way.. we just have to make decisions be comfortable with them and not look back !
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Hi Aussieched,
The Oncotype DX test is available in Australia. Google Healthscope Pathology and it is under patient pathology and Breast cancer.
I had chemo and rads and now on arimidex as I was a poor metabolizer of tamoxifen.
I know women who only had rads and then a tablet. I see you are grade 1 . I am grade 2 and my tumor was alot bigger than yours.
Good luck with everything. What part of Aussie are you from?
hugs
Kathy
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jag-My experience was similar to yours. Initially on the SNB I was negative, then the more detailed pathology came back with a micromet. I went back for the AND and they removed 9 more nodes, all negative. My Oncotype was 16, in the low range. However there is a new study, the Tailor trial that they think will change the scores. I think I would end up in the intermediate range by their new scorings. Statistically, chemo did not increase my outcome tremendously. My Onc said chemo was my decision. I have an 11 year old and I just had to throw everything at it. I want to fight this beast only once and that made me throw more at this beast, including chemo. Having said that, I did not choose the most harsh chemo regimen. After considerable research, I chose CMF which is not as hard...not fun, but I still have my hair and am functioning pretty normally. You will have more information soon which will help you decide. These decisions are very personal and only you can make them. The Cancer Math site was helpful to me too. I wish you peace in whatever you decide.0
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hello honey, I too had lymph node involment, 3, and all this while making wedding plans, this was 16 yrs ago (Praise God). IDC,Lmast,stage 2, reconstruction(body rejected)chemo,rad,tamoxifen for 5 yrs. God Bless Us ALL. msphil
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DesignerMom,
I appreciate the information about the Tailor Trial but couldn't find any indication that they are changing the way the Oncotype scores are interpreted now. I think the Tailor Trial is arbitrarily placing certain scores in certain categories for purposes of the trial. We don't know what the trial will determine and it is possible that some of those in the now intermediate risk range (18 - 31) could be determined to be in the low risk range once the results of the trial are known.
As far as I know the following from Breastcancer.org is still the standard used to determine whether or not chemo is given using the Oncotype Test:Interpreting the results: When the Oncotype DX test is complete, your doctor will receive a report that includes your Recurrence Score. You and your doctor can use the following ranges to interpret your results:
- Recurrence Score lower than 18: This suggests you have a low risk of recurrence. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.
- Recurrence Score between 18 and 31: This score suggests you have an "intermediate" risk of recurrence. It's unclear whether the benefits of chemotherapy outweigh the risks of side effects.
- Recurrence Score greater than 31: You have a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.
I do think it is a very personal decision whether or not to have chemo and each person has to decide for themselves based on whether information they have at the time.
I'm glad your chemo is going well.
My best to you.
Jacqui
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Thanks to everyone who posted re no chemo with positive nodes.
KathyNSW, I am also in NSW, on the upper mid north coast. With regards to Healthscope Pathology, I note that they have only started the Oncotype testing service since beginning 2009, but I believe the samples still have to be sent to the United States for testing, and it often takes quite a long time to get the results back, so therefore a lot of doctors in Australia are not using it at this stage, because they want to get on with the treatment as quickly as possible. It would be great for all the ladies who are now being diagnosed if they could have access to this test, as it would really make the decision on what treatment to do a lot easier.
Thanks for your reply
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I am also terrified at the prospect of starting chemo. Had double mast on 7/1. 2 lymph nodes had traces of c cells. I'm making myself sick over this
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Just a note about the http://www.lifemath.net/cancer/ site
The copyright for the application is 2007-2008. The stats are the average of patients from 1987-2006. There have been new developments in that time. Especially if you are HER2+ I fear these stats give a worse prognosis than actually true now that herceptin with chemo is now standard treatment for HER2+
This is what's under the frequently asked questions:
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Do the calculators take into account treatment with drug _______?
The treatment calculators take into account only those specific drugs (or analogues) listed in the treatment selection menu. The Outcome calculators are based on observed outcomes for cancer patients from 1987-2006. Thus they do include data for any treatments used during this time period. However, the calculator may not reflect the full impact of treatments developed later in that time period, or not widely used until later in that period.
Do the calculators take into account differing surgical treatments?
The calculators are based on observed outcomes for cancer patients from 1987-2006. Thus they are based on data including all surgical treatments used during this time period, and the relative frequency of a given surgical procedure for a given tumor type.
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Just read some of the post regarding Stage IIA breast cancer. Diagnosed in March 2004, HR+ and 3 out of 13 nodes involved. Have finished five years of arimidex and now in MD Anderson trial to see if taking a drug like arimidex for 10 years would help all of us. Best advice I ever got was from another cancer patient. Treat this as just another adventure on life's path. After reflecting on the past six years I have learned alot about myself and my family. Life is good as miserable as you feel some days. We were never promised a perfect trip.
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Hello Ladies-
I did see my surgeon to remove my stitches and I guess i'm healing well. I also saw my oncologist and she recommended 5 months of chemo and if the HER2 comes back positive (more likely than not) another 5 months of Herceptin- a dose every 3 weeks. My numbers have changed or I had it wrong - I don't know anymore. I'm stage 2, Grade 2, ER/PR+, 1/4 nodes, HER2+ (we think).
I have been traveling 4 hours (one way) to Boston from Maine for treatment. We decided that I should have the chemo done in Maine - I am waiting for the Boston oncologist to set me up with an oncologist in Maine so that I can begin treatment most likely in 2 weeks.
Is it normal to wake up at 4 am and be so anxious my heart just races? (I take something for anxiety to fall asleep - only since being diagnosed or I would never fall asleep).
I hope I can get through chemo, it just seems so long. Just the thought of getting the port inserted and all the scans and tests I need to do prior to starting chemo have me exhausted, how am I going to feel once it actually starts....
Up until June 30th I was such a strong woman. I'm VP of a large manufacturing company, involved in the community and outgoing - so in control and very confident, now I don't even know who I am. I don't want to get out of bed and all I think about is going to bed and escaping. I feel bad for my 3 sons, that I don't have the energy I once did only 2 months ago.
I'm tired of everyone telling me I'm strong and you'll get through this, your hair will grow back, etc. I'm scared and weak that's the truth.
I'm sorry to dump, but I don't know who to talk to or where to turn.
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I'm so sorry, that I forgot to thank everyone for their comments, they really are helpful and supportive. So glad I found this thread.
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