Chemo or not? - Second breast cancer - Oncotype Result 24

Leodreamer

Greetings Everyone: What a wonderful group of very supportive people here! Believe it or not, today is the first time I've sought out a "community" (breast cancer centred or otherwise!) to share my current journey. Just some background: My first experience with breast cancer was July, 2007. The cancer was ER+.in my left breast.and I'm embarrassed to say that's all I know about it! I didn't know what questions to ask, I just went along with what I was told to do...though i did opt for for the lumpectomy rather than mastectomy at the time and a course of 6 weeks of radiation. I was assured that the cancer had all been removed (it was very small...3 cm) and we were all confident it wouldn't return. I did start on Tamoxifen but it and I were not a good fit...I experienced extreme fatigue, pain in my joints and severe headaches. I was a college instructor with a very busy schedule and I was feeling "wiped out" at the end of every day and so after with consultation with my health team it was agreed that I could stop taking Tmx as it was felt that the risks of a recurrence were slim.

Real time: Thanks to you all that have continued reading this far! Now I am at decision time and feeling a bit overwhelmed as everything has happened so fast this time. Mammogram, Sept. 6th, Biopsy Sept. 8th and received diagnosis Sept. 13th. Then followed a couple of weeks filled with appointments, tests, scans, lab work etc. with my surgery date set for October 3rd, 2017. I had a full mastectomy this time and have opted for reconstruction and have had two procedures so far with another four scheduled to the end of December and this time I am on Letrozole instead of Tamoxifen. When I had a follow-up appointment with my oncologist Oct. 19th, I found out that: my cancer was a second cancer not a recurrence, it was ER+, Stage II and Grade 2 and again only about 4 cm in size. (See, I knew to ask more questions this time! **grin**) When the subject of whether chemo would be advisable or not the oncologist suggested we send a sample of my cancer to a lab to get an idea of whether my cancer type fell into the low, medium or high risk range for a recurrence. So, as noted in the subject line,the results have come back with a result of 24...not low...but not in the high risk range (which is 30 and above) but in the intermediate risk range. When my oncologist called to give me the result I got a sense that he would be recommending chemo (I have an appointment Dec. 8th to discuss next stage treatment). However, on speaking to my family doctor he thinks that perhaps the side effects of chemo are too high for the level of risk of the cancer returning. Most of my family members though, think I should go forward with the chemo with a..."do all that you can now...so you have no regrets later" sentiment.. I'm not afraid of most of the side effects (other than hair loss which is sort of an issue for me...even if I'm 68!) but I've been through major back surgery, lost an eye due to an accident, have a pacemaker, had shoulder surgery and as mentioned earlier have survived a previous cancer diagnosis.

I am by nature, a very positive person but this situation...having to say yay or nay to chemo is flummoxing for me. Sorry for my being so.long-winded (I think it is a side effect of being a college instructor for almost 30 years! **smile** Thanks everyone and your feedback would be kindly appreciated.

Anita

KBeee

Sorry you find yourself back here. Your doctor can order the mammaprint, which gives high or low risk, and no intermediate score. You also could get a second opinion and/or third one. 4 cm is a pretty good size tumor, but you also have to consider your other health issues and determine the risk/benefit to you.

Leodreamer

Thanks KBeee for your input...and I agree that having a low or high is better than this intermediate score. I'm seeing my GP (who's known me for over 30 years) on Wednesday with my husband and discuss my treatment plan and the risk/benefits. Tomorrow (Tuesday) I'm scheduled for a PET Scan to check out those spots on the lung (which I'm confident are what the medical profession call "incidentals"...sheesh!) Then I get the scan to checkout the adrenal gland on Nov. 30th and again I'm hoping it is bly another "incidental" and finally as noted in my original post, I meet again with my oncologist on Dec. 8th. Meanwhile i'm busy comforting family and friends that everything is going to be fine and not to worry....just have to remember to tell myself that!

Blair2

Leodreamer - I’m 68 as well. I also had a bypass three years ago that has concerned me as to how well chemo and radiation will effect my overall future health. Having a high intermediate Oncotype score of 27 made me decide to go through chemo - but very reluctantly. I start the 30th. My oncologist is very young and I wonder with her inexperience if she truly understands how older bodies react to such treatment, but then I have to trust her. I wonder about statistics and have found little info. My breast surgeon could have cared less, had my facts all wrong with heart condition, so that was annoying, but I’m through with her at least. My cardiologist just told me not to worry- I was in good hands, but yes, there were risks. I lived with uncertainty for two months now and I’m completely frazzled with fear because of all that’s been told to me. The women here on the blogs have helped a lot to keep my fears down, but until I get through the worst of it - then maybe I can relax. Maybe - that is if these treatments of chemo and radiation don’t do permanent damage.

I can say, no doctor has told me that - but we are at their mercy. You wonder if they really care or not with their hands full of patients. My bs didn’t care, she acted like my case was no big deal and put on a flighty act that amazed me that any doctor could act like that. All she worried about was how much I was worried, and felt I was being wrong feeling that way! She even suggested a therapist! That was the last straw with me and I told her no therapist, no doctor (including her) was going to make me not worry. (She only made it worse) We are victims of a life threatening disease and we are crazy for worrying so much? Well, I decided she was a doctor that was sick of hearing sad patients complain and probably tired of her profession. In contrast, most of all the techs and nurses have been supportive.

Anyway, with so many appointments, so many ifs and buts, so much aggravating wait for results - it is enough to drive anyone crazy. My advise is to write down as many questions as you can and try to get them answered when you talk to your oncologist. I’ll let you know how I muddle through chemo. I’m vain, and fear my hair loss. I’ll cry for the first time when it’s gone. My breasts aren’t very pretty, but I’m in tact, they aren’t important to me at this age - the hair will grow back I tell myself. I’ll get it behind me and hope again these doctors know what they are doing. I just want you to realize that you’re not alone! Let us know how it goes. Best of luck

Luckynumber47

Isn't there another part to the Oncotype test - where it shows the % of benefit you get from doing chemo. My % was really low and I didn't feel the risk outweighed benefits for me. In fact, the bar graph on the back page showed a negative benefit, so I felt good skipping chemo (my number was 18)

Since you are ER+ I expect you'll be offered an AI and they are tremendously effective at controlling any cancer cells that may have strayed, in many cases they're better than chemo.

I also have heard good things about the Mammaprint - always helpful to have all the information possible when making such an important decision.

Wishing you all the best.

lrwells50

Leodreamer,

My OncotypeDX was 24, and my chance of recurrence with 5 years of tamoxifen was 16%. That sounded pretty high to me. Chemo reduced the chance to 6-10% according to the onco. My breast surgeon had told me if anyone wanted me to do chemo to call him before I did it. He got me an appointment for a second opinion. That oncologist said with my size tumor, he wouldn't have done an OncotypeDx, but since I had one, and the score was 24, if it was his wife he would recommend chemo.

My pre-surgery biopsy was invasive ducal carcinoma, but my post-surgical labs were invasive lobular carcinoma, with ductal features. I know that lobular isn't supposed to respond as well to chemo as ductal, but all of the docs had been expecting a low OncotypeDx score, and the 24 kind of freaked me out.

I don't have any huge health issues other than a hiatal hernia and being overweight, and the 2nd opinion oncologist said he didn't think I'd have any trouble with his recommendation of 4 treatments of Taxotere and Cytoxin every three weeks, and he was right. That's not to say I don't think I was incredibly lucky, but not everyone has an awful time. Because I never throw up, not once in the last 45 years, that's what I was most concerned about, but I wasn't nauseated at all. I had some of the symptoms, weird tastes the week after chemo, hair loss, swelling in my legs and feet after the third treatment, a persistent cough that took FOREVER to go away, but all relatively minor. Because Taxotere can cause permanent hair loss, that was my biggest worry, but I'm 17 weeks post final chemo, and my hair is coming in pretty fast, and I think by Christmas I'll be able to ditch the wig.

You obviously have some more serious health issues than I do, so I do think you have to consider the chemo side effects, but talk to all of your doctors, and get a second opinion from another oncologist if you think it would put your fears at rest.

Good luck with your decision

Edit—

I meant to say I was 66 at the time of my diagnosis

Leodreamer

Hi Blair2...thanks for your input. My goodness...I do understand about the "busyness" of appointments, tests, scans and more appointments. It's like a "hurry up and wait" scenario! And I understand the concern about the hair loss thingy as I must admit that I too am a bit vain and my appearance is important to me too! I know that for some, losing one's hair is not as big a deal as perhaps for others but I don't think there is a document that states we should feel this way, or that way or that we shouldn't be feeling this or we shouldn't be feeling that. The thing is, we are each of us unique and I know now having spoken to a number of people and read a lot of comments that for each of us this is not a journey that comes with a map of how we travel from here to wellness and our future. And yes, please, let me know how you "muddle through" and remember you are the one that is experiencing this yucky disease so don't let others negativity affect you too much. Take heart in that here you have a wonderful and support group of people who have, are or will be going through what you have and will be going through. Sending positive thoughts and energies your way! And thanks for reminding me that I am not alone! Cheers! Anita

Leodreamer

Hi LuckNumber47: Thanks for your comments. I did not know about the mamaprint and what it's purpose was until I started reading the comments by other writers. When I next see my oncologist(Dec. 8th) that will be on my list of questions. I also wasn't aware that there was another part to the oncotype testing where it shows the % of benefit you get from doing chemo. So that's another aspect I will be talking to my oncologist about! So far, my GP and my family are encouraging me to go through with the chemo but I'm not sure of what's next until I talk with my oncologist on Dec. 8th. Currently I am waiting results from a PET scan to rule out the "spots" on my lungs as being incidentals and also have a CT Scan on Nov. 30th of my adrenal gland to also rule out any issues there. So, as I noted in an earlier posting, it is a hurry up, get tested and wait for results. Until then, I'm trying to worry about the results of my current tests, I should mention that I am on Letrozole this time instead of Tamoxifen but I seem to be having the same issues, such as fatigue and headaches. I'm hoping that my body will get used to this drug sooner than it did with the Tmxfn. Thanks again for the information as well as for your good wishes! Cheers!

barcelonagirl

Hi Leodreamer! I too am sorry that you are back in the throes of another diagnosis. Glad, however, to hear it is a new primary! When I was diagnosed 5 years ago, my smaller 1.5 cm ER+ HER2- no nodes came back Oncotype 21. They then ran a MammaPrint (I was in the PROMIS Trial which took intermediate ODX and ran them through the MammaPrint test). I came back High Risk and did the chemo (even tho my doctors weren't thinking I would come back High.). The PROMIS trial results came out and showed that Oncotype Recurrence scores between 18-30 resulted in Low Risk and High Risk results for each recurrence score. Thus a low intermediate doesn't mean you're Low Risk of recurrence and a higher intermediate doesn't mean you're High Risk and will show benefit to chemotherapy. I was so impressed by this test that I am now working for the company that makes the MP test! Can you ask your doctor about running MammaPrint,? It could help you and your doctor more easily make that decision!

Sending prayers and good karma to you!! It's such a difficult time, when you're gathering your information and want to take control of your situation!!

Leodreamer

Hi Irwells50: Thanks for sharing your comments with me and your journey. I have to admit that initially the thought of chemo wasn't something that I considered that I would have to be thinking about. When it was decided that a mastectomy was the best route to go this time (with reconstruction procedures ongoing for the next few months) I had come to terms with it all...sort of. After surgery I met with my oncologist and he informed me that this was a 2nd cancer and not a recurrence. Because of this my oncologist said that, with my permission, he would like to send a sample of my cancer for oncotyping. He said that he expected the result to come back in the low range but wanted to be sure before we discussed what my further treatment would be. (I am currently on Letrozole rather than Tamoxifen due to my negative experience with the latter during my last cancer treatment). When he phoned me at home with the results of 24 he admitted that he was surprised and though initially he was not too concerned about the spots found on my lungs and adrenal gland he now wanted more scans done. (I had a PET scan on Nov. 15th and have a CT Scan scheduled for Nov. 30). I have an appointment with my oncologist for Dec. 8th and was told that in the meantime I should discuss with my GP and family and get their input and perhaps that would help guide me in my decision. I was of the impression that my oncologist was on the side of doing the chemo. So, I'll let everyone know once a decision has been made...one way or another. Of course, results of my scans could play a role in that! Just trying to think positively for now and again...thanks for your taking the time to share your experience. Cheers! Anita

Blair2

You're welcome Anita. I worry more about my heart. However, I'm going to assume that these drugs aren't as bad as some of the others - especially for the heart. They will make sure that they are giving you the right ones with your heart condition, and you will just have to dish out the benefits vs. the side affects with your doctor. My oncologist said that mine was considered on the the mild side. She said "we give these drugs to 90 year old women". Well, if I were 90, I don't think I'd bother, but I didn't tell her that. I just thought it was a bit funny. I don't know what she meant by "mild side". Maybe that's why I hear a lot of women who have been on these drugs haven't had severe or bad side affects. However, they are still strong drugs and everyone will react differently. I'm so glad I found someone the exact same age! I was getting depressed hearing all the young mothers complain (yet some weren't complaining much) - they are more at risk for recurrence because of their many years of life expectancy. Age makes a big difference because our bodies slow down and at least their bodies are strong to put up with drugs more than us. So it makes it scary for us older ones - especially with heart conditions - oh my.

Luckynumber - you ARE lucky. Oncotype DX 18 is still low recurrence and you didn't need chemo. Yea! My benefit is 50% with chemo. Without, I would have an 18% of recurrence doing radiation and hormone therapy for 5 years. With chemo, 8-10% recurrence rate. At 27 score, I was high intermediate. Just didn't give me much choice.

Irswell50 - you too had to make a tough decision with a "should I, shouldn't I" score of 24, but you protected yourself. Be glad the worst is over! Nice to hear you didn't suffer too much too. You are also lucky you didn't have radiation. That's what I thought I would only need (scary enough), and was shocked when the Oncotype score came back high.

Totallytubular

Hi Leo Dreamer and all --

if this helps, I had an oncotype score of 21 it was my second primary cancer. had 2 other opinions and decided to go with CMF chemo which is lighter than others. (I had progesterone negative which can be trickier to treat with Arimidex) I had hair thinning and managed 6 treatments. 8 was optimum. I did it as an insurance. it wasn't that bad.. but does take you down. please follow up by taking the Arimidex. If you look at the survival numbers.. it is a real lifesaver. It took me 6-12 months to adjust to the meds.. then I was fine. wishing you luck.

Leodreamer

@ Totallytubular...Thanks for your feedback and I'm glad to hear that you are now adjusting to your meds. After doing research, listening to others in similar situations, discussions with my family and a meeting with my oncologist I have decided to opt out of the IV Chemo treatment even though my Onctotype result was 24. When I visited the onc. he said that he had booked my first chemo treatment for the Thursday (Dec. 14th) but it didn't mean I was committed just that the appointment was set if that was the route I chose. A few things he said helped me make my decision. First of all he said that as I already had a low immune system and that chemo would be particularly hard for me, that up until 10 years ago women over 60 weren't given the option of chemo (though now there is no age restriction and I am 68...can't believe I just typed that number! **grin**) as it was deemed too risky , that of course even with chemo I could get another cancer as there are no guarantees and that without the chemo there was only a 18% - 20% chance of a recurrence...based on the numbers. He then said I should be very motivated to proceed with chemo due to the risks involved but he would support whatever decision I made. So in discussion with my husband, it was decided to cancel my appointment for chemo as the risks seemed to outweigh the benefits and continue with the Letrozole. I've been on Letrozole since the end of Oct.. Currently experiencing some side effects such as joint pain, headaches (which I generally never got before) and frustratingly...fatigue...my stamina is not what I'm used to it being! I am trying to be patient with it all and having read a lot of info through the forum I know that it does take time and everyone's situation is unique.

@ Blair2...I agree it is a bit of a different experience when you get your 2nd cancer when you are older. I feel that my age did play a role in my decision to opt out of the chemotherapy due to the reasons that I stated above to Totallytubular. I've heard of others who have opted out of chemo as well but continued with Letrozole and changed their diet (vegetarian) and started being more active and they are doing well. Each of us needs to do what we feel is best for us.

For now...wishing everyone a wonderful Christmas filled with magical times with family and friends and a New Year that is healthy!!!, happy and prosperous.

Blair2

Leodreamer - it’s definitely a personal choice and at 68, had my doubts.I had my second round out of 4 today. Just want it to get over. Hair is gone, but I do get a lot of compliments on my wig - tells me my natural hair must be ugly, but the wig is a bit too perfect! Anyway, best of luck to you and have a wonderful Merry Christmas!

Wonderfulmom

Hi. I don't think that the doctor will allow you to make that decision. Perhaps you should allow the oncologist to weigh in when you see him. I had 4 preventative chemo treatments. It wasn't the strongest chemicals either. My hair fell out, I got so weak that I only had enough energy to lie there and look at the TV. I also had horrible leg pains that 2 strong Percocets every 3-4 hours couldn't get rid of plus terrible nausea. I lost my eyebrows and some eyelashes. It made my already weak teeth worse and made it harder to focus, even after the noticeable chemo brain faded away. Not to mention the psychological feeling of knowing that it was Wednesday and by Friday you were going to get very sick and there was nothing you could do about it. I did it because I have 3 children. I really didn't want to and I hope you don’t have to

.

Leodreamer

@Blair2: Thanks for your feedback...I do hope that the holiday season (aka "Christmas") was kind to you and you enjoyed time with those closest and dearest. Thank you for your kind wishes and I send my best to you and yours for a brilliant 2018! As to the hair loss...as they do say...hair grows back. I do feel that it is the spirit within that will give you your strength...my best wishes that you experience the "least" of the "effects" of the chemo! As to me.. I am feeling good about my decision to opt out of chemo. At 68 I have gone through breast cancer surgery 2 times now and currently going through reconstruction procedures....which are a bit onerous but I am hopeful at the end of the day I will at least "look like me" if not "feel like me"! The Letrozole has continued to present it's challenges (migraines, joint pain and fatigue) but I am strong of heart and am looking forward to a a break with a holiday with my husband to Mexico at the end of February...a celebration one might say of my husband and I successfully navigating this challenging period together as one!

@wonderfulmom: Hi...thanks so much for taking the time to give me feedback. Actually, when I spoke to my oncologist he said that he thought that for me to have chemo I would have to be motivated as the side effects would be very challenging. This was due to, as previously stated, my current low immune system, lung issues (due to past smoke inhalation and severe asthma) and my heart condition (I have a pacemaker). The reason my husband and I opted out of the chemo treatment was that even with the chemo , my type of cancer could return anyway and that my risks of cancer returning were only decreased by 18%. This did not mean of course that cancer would ever return either way, but...in light of the many side effects of chemo and the small benefit...it made sense to us for me to opt out. My oncologist supported my decision and cancelled my chemo therapy...though I am now still on the Letrozole. It has it's own side effects as noted in my notes to Blair2 but not as significant as in chemo. I send you my best wishes to you and your family including your beautiful 3 children (my 6 are all grown and out on their own)and that you have a bright future altogether! Best of luck for 2018! Cheers!

Trisha-Anne

Hi Leodreamer

I read with interest about your decision not to do chemo.

I had a second primary tumour two years ago, and having had a triple positive bc in 2010 and having done all the treatments, when I found the new tumour I was quite adamant that I wouldn't be doing chemo again - the first time around had been pretty horrendous!

My family supported my decision, but when I found out that the new tumour was triple negative, I rethought my decision and decided to at least try chemo again. Mind you I was 58 at second dx - and I knew that without chemo a triple negative dx was pretty much a death sentence. Chemo was as bad as I thought it would be - and I now have heart damage and my liver is playing up.

I know that if I get another bc, there is no way I'd do chemo again. I've had to stop taking Femara (for the first bc) because of side effects.

I'm glad you have made your decision and are happy with it - chemo can be a lifesaver, but it has its place, and sometimes it's better to not go down that path.
Thank you for sharing your thought processes, not everyone is brave enough to go down the path you have :-)

Trish

xoxox

jo6359

I'm newly diagnosed. What is oncotype? I was diagnosed with a 1.2 centimeter cancer December 8th and December 22nd another 1.2 cm cancer same breast. My original surgery for lumpectomy was cancelled after the second cancer showed up. Tomorrow I'm discussing lumpectomy versus mastectomy for surgery options. Do any of you have any feedback? I am totally overwhelmed with this new development. I had a pet and CT scan it showed the to cancer and everything else was fine.

KBeee

jo, Sorry you find yourself here. The oncotype is used in cancers that are ER positive and HER2 negative. In those cases, it helps to determine the percentage of benefit of chemotherapy to help in the decision making. If the cancer is ER negative and/or HER2 positive, then chemo is usually recommended, which is why oncotype is not done in those cases.

As far as lumpectomy versus, mastectomy, it is a very individual decision. If there are 2 tumors, it may depend if they are close together. Mastectomy and lumpectomy have the same overall survival rates. Lumpectomy has higher rates of local recurrence. Mastectomy has a higher rate of complications. The situation is very individual and there is no right/wrong for any person. I had a bilateral mastectomy. My decision was made based on the following:

1. I had a very strong breast cancer background in my family, and I was pretty young (43) at diagnosis. If I had less chance of local recurrence, that was important to me. Notice I said less chance, not no chance, As you can see, I did have a local recurrence. It can still happen.

2. I had size A breasts. Tiny. If you were taking the lump, you were pretty much taking the whole thing. They would have had to put an implant in that breast (and the other) which would have obscured future imaging...a problem given my high risk.

3. I chose bilateral because my tiny saggy breast would look ridiculous next to a perky implant. I would have had to have an implant in both. As long as I required surgery anyway, I wanted to get rid of the breast tissue. My mom had a new primary in her other breast 20 years after her first round, I wanted to minimize this possibility. Again, it's rare, but I have a strong family history.

There were other reasons, but that's pretty much the gist of it for me. Had I had nice big breasts where a lumpectomy would suffice, I might have made a different decision...not sure since I was not in that category.

Good luck with your decision. Make a pro/con list of all of the choices, and bring a list of questions with you. Also bring a partner/spouse/friend with you to take notes. You won't remember anything the doctor said a few hours after you leave.