Need help with treatment choices

[Louise O'Brien]

I'm a newcomer here and I have a week to make a decision. I was diagnosed with invasive breast cancer in August; had a left breast mastectomy four weeks ago.

The pathology report indicated Stage two; Cell grade two; ER/PR negative; HER2 positive. Sentinel lympth node negative. No spread. Tumour 1.5 cm. Very clear margins.

Had appointment with oncologist last week and I was convinced I would just be put on Herceptin. But I'm told that OHIP (Ontario Health Plan) will only pay for Herceptin if it is combined with chemo. The oncologist agrees that chemo will make very little difference in my case - about 4 per cent. They're recommending a medium dose of Adriamycin/Cyclophosphamide for the first four doses; switching to Taxol & Herceptin at the fifth dose. Herceptin to continue for one year.

He says if I'm experiencing any severe side effects - particularly neuropathy (sp?) from Taxol they will pull me off chemo and continue with just the Herceptin. He says while it appears they "got it all", there's no guarantee there isn't a dormant, renegade cell lurking around somewhere.

I should add that I am 67 but in extremely good health and very fit - although just before my mastectomy when they ran me through an echo-cardiogram - they discovered a faulty heart valve that I was probably born with. It wasn't considered serious - just a "trace" problem.

So here I am. I have a decision to make within a week. This is also a quality of life issue with me. My husband is about to retire and we want to do some travelling and I figure I probably have ten good years in front of me before we're less able to get around.

Having said that, I am inclined to do whatever it takes since I know HER 2 is extremely aggressive but I worry about the side effects considering my age, especially "chemo brain", since I was hoping to go back to school next year.

I feel a bit like a guinea pig because there aren't that many studies around on women with Early Stage Breast Cancer/No Nodes being treated with Chemo and Herceptin. It's like the Lady and The Tiger. Damned if I do - and damned if I don't.

I'd really appreciate some of your insights.

[Mary Jo]

Hi Louise,

When I was where you are I would have loved to hear "no chemo" HOWEVER, now that I have finished with chemo/radiation/herceptin I am thankful I went through it to give myself all the added protection I could. Nothing is guaranteed BUT doing all we can is helpful. Both oncologists I met with said they would most definitely recommend chemo for any invasive breast cancer. I fought it every step of the way and argued against most things said to me. In the end though, I gave in (I think my husband would have killed me if I opted out of chemo to be honest with ya - Hehe) I did the dose dense regimin. Four A/C and four taxol. I started the herceptin when the taxol started and did that every 3 weeks until just recently. My chemo ended Nov. 30th and my herceptin ended Oct. 11, 2006. I am so thankful at this point that I did it all. Recurrence is a very real threat to all of us and after going down this road for a while you start looking at your body in a new way. Everything becomes a "what if it's cancer" issue. Knowing I did all I could for myself helps put my mind at ease somewhat.

So......................................there's my 2 cents worth. Chemo wasn't that bad for me. Maybe I just sucked it up and made the best of it - I don't know. All I do know is it really didn't hold me down too much.

So, God be with you as you make a decision. I hope this helps a bit. I'm happy you had no lymph node involvement and your scans showed no metastic disease.

Hugs -

Mary Jo

[rinaina]

I understand your dilema completely. I was diagnosed in the spring of 2006 with stage I er/pr - her2+ node negative and I had a lumpectomy. I underwent chemo, AC 4 treatments and finishing with radiation next week. I am taking Herceptin for a full year. The fact that you have a problem with a heart valve makes me wonder if Herceptin could cause a further problem as it can affect the heart so that is a question to ask. As for doing chemo...I don't have a good answer. My oncologist and surgeon both felt it absolutely necessary given how aggressive Her+ can be. I wanted to do everything I could to make sure that any lingering bad cells were killed off so I opted to do the chemo and made it though. I am hoping it was the right decision and that it won't come back to haunt me later. As for Herceptin, I researched it and like you found that they knew little on how herceptin works with early stagers like us. My onc felt it was something that could only help not hurt me and I trust him and went with it. I really couldn't find anything negative on using it at this point and again hope it doesn't come back to haunt me later on. I feel okay on the hercepting. The chemo was rough though and I am glad that is over. Why the mastectomy for you if you were node negative?

Hi Louise
Your diagnosis sounds like a mirror image of mine, including the heart valve problem. I am nearly 64 and fit, not overweight. I exercise regularly.

I am also Stage II. I am American, but I live in Switzerland, and over here, after lumpectomy with clear margins, they have put me on chemo for six cycles of doxorubicin (epirubicin), 5-fluorouracil, and cyclophosphamid, to be followed by radiation for six weeks (5 x wk) and then Herceptin. I think, but I am not sure yet, that the Herceptin may be just plain Herceptin. Thus far the first round of chemo was uneventful. The worst part was the fear surrounding it. I had periodic waves of very slight nausea, not even worth mentioning, and I slept more than usual. My face was puffy for 3-4 days from the pre-medication. I am not sure how it will progress though, but so far - nothing to worry about.

The FDA would not have allowed Herceptin to be used in non-metastatic breast cancer, i.e., early stage, if there had not been adequate and controlled trials in early stage breast cancer. It was only approved last year for this use. Previously, it was only used in metastatic breast cancer. It looks promising, and I am excited that we get to receive this treatment!

I have worked in the scientific field for 30 years, of late, I was the regulatory affairs manager for a Swiss vaccine company, the FDA contact person for our company. Even though I have a solid scientific background, I let the doctors decide how to manage my treatment. I do ask questions, and ask their opinion for consideration of some topics, but in the end, they are the experts. However, having said that, the hands-on experience from this site has proved invaluable to me in the last six weeks, in terms of education, trust, and loving friendship. The women here are so smart! Reading at this site has helped me ask the right questions!

I guess my message is not to be afraid - it is just extra stress which you don't need.

It sounds as though your doctors are making good decisions. Personally, if the doctors suggested chemo, I would go for it, and blasts those micro-metastatic buggers, wherever they are lurking, but that is only my opinion.

I hope this has been helpful, and I do wish you all the best.

Kind regards,
Nedra

[Louise O'Brien]

Thanks for all your comments. I was hoping to find someone in a similar situation.

To answer a few questions - It's not as if the oncologist is recommending chemo - he's telling me that I have no choice. I have to take it if I want Herceptin. Our government health plan won't pay for Herceptin on its own.

And why did I have a mastectomy if I was node negative? I didn't know I was node negative until after surgery. I knew the lymph nodes were negative but I also knew that the key test is on the sentinel lymph nodes and they weren't removed and tested until surgery.

I did not have a lump when I was diagnosed. It was a pattern of micro-calcifications that didn't look right on the original mammogram. Very trace and scarely noticible. They sent me for further magnification but avoided ultrasound as they felt it wouldn't show up as well. After my diagnosis, the recommendation was that - were I to consider a lumpectomy, I'd better have an MRI first to make sure these traces weren't scattered somewhere else.

Given the long surgery wait times in Ontario; the wait times for MRI's; the debate over how effective they can be and the fact that the cancer was invasive, and my cell grade growth was 2 out of 3 - I decided on the mastectomy. I felt I couldn't afford to wait. I wanted it out and I didn't want to worry that it might be somewhere else. I also had the top surgeon in our area (everyone told me how lucky I was to have him and not to consider switching) and while he wasn't making any recommendations, he wasn't discouraging me. I had surgery within a week.

Believe me, I've had some second thoughts about that decision since then but knowing now that it was HER 2, hope that I've done the right thing. I have to move on.

I'm now getting my head around the upcoming chemo treatments but I dread them.

[MJo]

Dear Louise...
I dreaded chemo too and I really wanted someone to tell me I didn't need it, or that I could stop taking it once I started. But everybody recommended chemo...the first and second oncologist I consulted, the surgeon, my allergist, my primary care doctor...even the pulmonary specialist I saw when I got a lung infection. Please try to take things one day at a tiime. It's overwhelming, but we get through it. Keep posting MJO

[RhondaH]

I would do it if I were you. I was Stage 1, ER/PR-, HER2+, No nodes (1.6 cm tumor) and I did Taxotere, Epirubicin (easier on the heart than Adromyacin) and Cytoxan followed by Herceptin for a year. Take care and God bless.

Rhonda

[tousled1]

Louise,

Don't ever regret any decision you make regarding your treatment for breast cancer. I had a bi-lateral mastectomy -- both my surgeon and oncologist thought I would be okay with just a lumpectomy. The week before surgery the surgeon ordered an MRI of my left breast and low and behold an 8mm area showed up -- along with microcalcifications. Surgeon wanted to do a biopsy and I said why bother I'm having a bilateral anyway. I have no regrets about my decision and would do the same thing again.

HER2 cancer, no matter what stage or grade, is agressive and fast growing. If you can get Herceptin even if it has to be with chemo I would do it. Everyone reacts differently to chemo and also to Herceptin. For side effects of Herceptin you might want to view the post "Please post your two cents on Herceptin "side effects" real or perceived!"

[chrislmelb]

Louise, as you are hormone negative i would definitely do the chemo to get Herceptin. Maybe due to your age they may give you a lighter dose???? They hit the young ones hard. I am 40 and found my chemo not too bad. I had FEC like Nedra so i can't comment on ac/t. Also, seeing as you had a mastectomy, you probably won't need radiation. Re mastectomy v lumpectomy, that is to do with spread not nodes.
Re QOL with your husband retiring, initially it may be frustrating but you will have him there to look after you and everything else. Then when you are back on top of things after you can get on with things. These things are sent to test us I think!
Good luck with your decisions.
Christine

[fourboysmom]

Hi Louise, Haven't been on this board in a bit, and then I stumbled onto your post...I, too, was node negative, and had a mastectomy at age 38. I was told I had alot of calcifications in that breast, in addition to the mass. and therefore required a mastectomy. Because of the government regulations, you need chemo in addition to Herceptin. I say go for it...but you do have a choice in the types out there. Ask about Navelbine with Herceptin. Minimal side effects and no hair loss. I was in a study at Dana Farber in Boston that studied the effects of Navelbine/Herceptin with Taxotere/Carboplatin/Herceptin. I got into the latter group with worse side effects. Both combos were highly effective. I, too am ER,PR-, stage 2. My tumor was quite large, which even more is amazing I was node negative.

You still have alot of life ahead of you-- I wish you the best. Love, Janet in CT

[Sheila]

Louise
I was diagnoses right before I turned 50, 0.7mm tumor (calcifications) Stage 1, ER PR - Her2+++, Clean Nodes, Had a mastectomy, and 4 1/2 years ago, Herceptin was not available to Stage 1, chemo was not recommended due to small tumor and clean nodes. I also have MVP which is Mitral Valve Prolapse, a faulty or sloppy Heart Valve, hereditary...well, I recurred 1 1/2 years later....then I was a candidate for Herceptin....I often wonder if I had chemo to begin with, if I would have recurred.....I would go with the current recommendations, as that gives the best odds. I have never had a problem with the Herceptin and my floppy sloppy heart valve. You are in our thoughts and prayers as you start this journey....believe me, there are alot of "travelers" who have walked this journey on this board who can answer anything you may want to ask....

[Louise O'Brien]

I thank you all so much. This information - and your support - has been so helpful. I have decided to go through with it but I am much more informed now than I was even a week ago. I will certainly ask about those other meds. Right now the oncologist is recommending a medium dose of A/C for the first four rounds, followed by Taxol & Herceptin for the final four with Herceptin continuing for a year. I will ask him about other combinations though.

So I'm prepared for the hair loss. I had it cut short just before surgery and once I get the chemo dates, I'll return to have it cut even shorter which I hope will make the loss a tad easier to take, if that's possible. I always joked with my hairdresser that I might be interested in going back to my original colour - whatever that might be. We talked about how it could be done - but I never bargained on this method. At least it's cheaper. I'll put the money I've saved in a travel account.

It's ironic - it wasn't until after I had my mastectomy and pathology report and started to do some research - that I realized how aggressive HER2 can be. I've learned a lot in one short week.