Risk of Herceptin outweighs benefit?!

[bjj]

Aside from having two different HER2 tests - one IHC3+ and one IHC1+ I am confused now about this issue.

My tumour is Grade 2, ER+, node negative, 16mm.

I saw my local oncologist today who is only aware of the positive result. She said that she cannot recommend Herceptin in my case. She was adamant that the risk would far outweigh the benefit., She kept quoting 5% cardiac failure at me.

She said that my prognosis was good and therefore the effect Herceptin would have would be minimal. I thought my prognosis wasn't so good now that I am HER2+++? She then went onto say that adding HER2 factor in only changed my rate of recurrence by 50% i.e if you are quote 10% rate of recurrence this is changed to 15%.

I am confused, I thought my prognosis would be significantly altered by the fact that I am HER2+.

I asked about the accuracy of the test and she said that there was no doubt in her mind that it was positive, the lab that tested had a good reputation etc etc. She implied that she wished she could say otherwise.

I am slightly concerned though (aside from test results) that no Herceptin is the right decision.

Does anyone have any thoughts on this for me?

Thanks

[Unregistered]

Dear bjj,

My doctor told me the same thing, that my risk outweighed my benifit from receiving, Herceptin. My pathology is as follows: stage 1, 1.3cm tumor, node negative, vacular lymphatic invsion, negative, er/pr+, grade 3, Her2+++. I had several discussions with him, where he would break down the % of recurrence, and the therapies I was receiving. At the end of the day, I had about a 4% risk of recurrence without the Herceptin. I couldn't stop thinking about whether or not I was making the right decision. I decided to get 2nd and 3rd opinions, so I went before a local tumor board (different hospital from treatment) and down to Stanford University. I saw 4 oncs and 3 told me I would benefit from Herceptin. The onc down at stanford, kind of painted a different picture as far as recurrence (a littel highter with Her2+++). I went back to my onc and before I could tell him how I was feeling, he said, I should do Herceptin. I think I would have changed oncs to get the Herceptin.

I hope this helps you with your decision.

Karen

[Sheila]

I agree that you should see someone else...when I was diagnosed, I was Stage 1, node neg with a 7mm tumor, ERPR neg, and Her2 +++...4 years ago, Herceptin was not offered unless you were stage IV, so I could not get it...I recurred 1 1/2 years later and have been on Herceptin ever since....it may have prevented the recurrence....you are at a higher risk by being Her2 +++, much higher than the risk from the Herceptin itself....if you run into problems while taking it, you can go off it for a while....if you don't take it now, you may have problems that will last a lifetime...a recurrence. Hope this helps, I would get another opinion!

[Lyn]

Hi there, speaking from experience here, my HER status has also changed with my last diagnosis, a lower HER result, to me this means that the Herceptin IS DOING ITS JOB, I started out with a very agressive BC in 1998 and started on Herceptin just over 4 years ago now and my reoccurences have been managed with radiaiton and chemo and this latest result to me is that the Herceptin has slowed it up or changed the mutation of the cells. Also speaking from experience I had a worse heart symptom with AC, I was put in hospital with a heart attack and I don't think I am the only one, with the Herceptin my LV fraction has always been above 50% and my reading last week was 58 %. I was also put in hospital with heart failure in 3 valves October 2003 as a result of Thyroid treatment, the drugs they gave me did it and I wasn't supposed to survive, my LV reading at the time was 56% so the Herceptin had no impact on my heart what so ever, I had that much wrong with me they put me in a ward because they didn't want to take up space in the Intensive Care Unit because I was supposed to DIE, yet again, my expirary date was 2002 and with all of my ailments, I shall list them and show this to your Onc, the non believe: OK, Mixed connective tissue disorder, meaning a bit of everything i.e. Lupus/Sjrogens/Sclerederma/Fibromyalgia, Trigeminal Neuralgia, BC both invasive and tumour the size of an orange, radical mastectomy, removed chest and pectoral muscles down to the rib cage, 16 glands all positive no clear margin and not hormone responsive, then we have Hashimotos Thyroid, Chronic heart failure, left mitral valve and 2 others, fractured left shoulder with collapsed humeral head caused by avascular necrosis caused by doctors not picking it up, nothing to do with bone cancer which I do not have, now my right shoulder blade (scapula) has nerves dieing so I am loosing the use of the lift in my right arm, this came about and since I fell 4 weeks ago re fracturing my left shoulder, and from Low blood pressure from the medicaiton that strengthens my heart from the Thyroid treatment, nothing what so ever to do with Herceptin. I recommenced on Herceptin, after my stay in hospital with heart failure, the week I was out. Out of all this I am one of the lucky ones because my Onc is opened minded and he said it is a miracle I am still alive so I must know what I am doing, he has just turned 40 so at least he won't retire on me but he has been approached to head a private hospital in the Bahamas with a very lucrative package but thankfully he does his job for the right reasons and not for the dollars. I also have peripheral neuropothy in the feet and sometimes in the finger tips from the Taxol, I have had AC rads CMF, Taxotere, more rads, Femara more rads, Hercptin, Xeloda, Carboplatin, Navelbine, Taxol/carbo/herceptin, Xeloda/rads and now Herceptin/Xeloda/cyclosphomide, I have had over 100 sessions of radiation, all of this non stop since 1998, I tell everyone if they made car tyres out of me you would never need to replace them, I am in a lot of pain with my shoulders and neck, these have given me more grief than any of my cancer treatments, and if anything the drugs I have to take for relief are far worse for my heart than Herceptin. I am now 51 so I am not a chicken any more, but things keep getting thrown at me and I keep on getting back up, forgot to add chronic depression to that list of ailments, mainly due to pain and the negative attitude of some of the doctors I come up against. Keep up the fight. Hope this gives you a clearer picture of the dangers of other drugs, also took Aromasin which blocked the eostrogen, and it sure did that I had to use an eostrogen cream to get a normal PAP smear reading, there is probably more wrong with me but sometimes I get CHEMO brain and don't remember all.


Love & Hugs Lyn

[bjj]

Thanks to you all for your responses.

Karen - I am seeing this afternoon the consultant I was under for my radiotherapy - she knows that I have two different test results for HER2 but recognised the fact that I needed an urgent appointment. I think a second and possibly third opinion is what I need to clarify it in my mind. I asked my oncologist yesterday how many people she had treated with early stage breast cancer with Herceptin - she said 1 and possibly another 1 in the foreseeable future - therefore I don't consider that she is exactly experienced in this!

Sheila - I am sorry that you had a recurrence after such a short time. My gut feeling is that the risk (and fear for me) of recurrence is higher than the risk of Herceptin. My Mum died of bowel cancer and my fear of dying in a similar way is far higher than my fear of heart problems from Herceptin.

Lyn - you are amazing, what a list of problems you have had! I was really interested to read your posting. Despite all your heart problems Herceptin didn't make matters worse. You must be a very strong person to have fought your way back and to still be fighting all these problems. I really admire you.

Thanks for your help.

Love

bjj

[bjj]

I saw a consultant at the Royal Marsden, London yesterday - a leading cancer hospital in the UK.

She was very very good and took a lot of trouble to explain things clearly to me. She said that we needed to look at the bigger picture and everything else about my cancer was "good" and therefore even with the increased risk of recurrence because of my good prognosis the risk was less. She routinely tests everyone for HER2 (this doesn't generally happen in the UK) and so I felt that she knew what she was talking about it as she is dealing with people on a day to day basis.

I think the fact that I haven't had chemo also played a minor part in the whole thing as it could be a bit late now to start treatment from scratch.

I think the guidelines in this country may well change for people like me but I have to try and accept that at the time I was given what was considered to be appropriate treatment.

Thank you all for your support and help - very much appreciated.

bjj

[Joe]

Lyn and for everyone.

Lyn's vivid description of her experiences with bc, although not typical, exemplify why she has been granted the "special" - Living Legend description on her posts.

Through it all she remains optimistic,upbeat and willing to help others on this support group..God has a special place for her in heaven..and I am sure there will be a lot of Essiac Tea waiting for her.

Love and warmest regards
Joe

[Robin P.]

Hi,

I too have been told not to take Herceptin. I also only have a 4mm invasive her2+ that is er and pr negative and node negative. And I am nearing my 4 year survival. My only treatments were CMF chemotherapy for 6 months and masectomy. Thats it. And I have lived this long with no reoccurnece.

I saw two outstanding breast oncologists recently to discuss if I should take Herceptin after now after the approval of Herceptin for early stage disease. However, both breast oncologists, one from Dana Farber Breast Center also associated with Harfard Medical School and a leading Herceptin breast oncologist from the Roswell Park Cancer Center in Buffalo, NY, felt that I did not need Herceptin. Their rationale was that I had very early stage disease that had a low risk of reccurence and that the cardiac risk of the drug outweighed the benefit.

However, in a case like yours, you definately meet the criteria for Herceptin. Your tumor was over 1 cm; I would not have been eligible for this adjuant herceptin study based on my small tumor and negative node.However, your case may very well be worth the small cardiac risk of Herceptin. I think Iwould find a "Breast Oncologist" from a leading center if I were you and hash out the percentages of benfit and risk. Then make your decision based on the number game.

Robin

[Robin]

Add; Check out Adjuvant online to help you calculate you DFS and the risk of a reccurence. Then look at the risk vs. benfits of the Herceptin. Good luck,I think these decisions are diffcult. But if your risk outweighs the benefit, why suffer more treatments. Then again, nobody has a cystal ball. I mean nobody, only God.

Best wishes and prayers, Robin

[Lyn]

Thanks Joe, you are such a sweetie. I am aiming for the Guiness Book of Records, for what I don't know yet, Murphy's Law was written just for people like me. If I didn't laugh a lot I would be bankrupt buying tissues.

Love & Hugs Lyn