DESPERATELY need advice

[jsattaw]

Hi Susan --

I agree with the others but at some point you must be in charge and confident in your medical team. As someone mentioned on another thread, our physicians "work" for us and we pay their salary. Once you feel confident in how aggressive you want to be with your treatment, you just need to find a doctor who will support your opinion and reaffirm your decision.

I did a lot of research and wanted to be the most aggressive in my treatment for a recurrence after 7 years -- I did a mast with reconstruction, 4 treatments of Taxol, a complete hysterectomy, Herceptin for 1-year, and am also on Arimedex. After my initial diagnosis for Stage 1 - IDC, I did a lumpectomy with radiation (1998) but didn't know I was Her2+.

Try to ask yourself what course of treatment will provide you with the highest level of peace of mind and enable you to move beyond treatment with less concern about recurrence. Unfortunately, this is an inexact science and doctors like us, have their own opinions as to what works. Also, each of us are individuals and our bodies and cancers are different. So...no one has a crystal ball.

Good luck with your decision -- thanks for allowing us to provide our opinions.

Jill

I have NOT been following your posts and am not a sufferer, but have done quite a lot of very amateur reading on the general subject, and these are things that have struck me.

I must emphasise that every one is different and this disease appears to be more and more a disease that is subtly different in every patient.

The following have struck me in my wanders;

1. Cancers take up to ten years to develop, which suggests on the AVERAGE you do not need to panic, and have a sensible time frame in which to make treatment decisions without compomising you position to any significant extent.

2. Resistance CAN develop to chemo treatments which has two implications - the cell has mutated to avoid the impact of the treatment - and that is one more treatment off the protection list.

3. If you can afford them/ have access to them diagnostic tools are improving MRI CAT etc.

4. Various tumour markers are available to try and give you an idea what is happening in your body.

5. Chemo can have implications the immune system etc.

6. Chemo has been shown to have very positive results.

7. Local and bilateral recorrence can be treated. Spread to the rest of the body is the real problem. Cancer that has spread may not be the same as the original.

8. Statisitics are hard to find an pin down, but it is important to kep an eye on survival, as several treatments help with local spread but have not been shown to make a huge difference to survival.

9. It is reported that we all have potentially cancerous cells in our body - it is a question of the bodies ability to deal with them.

10 Check out the "life extension" site where they have some interesting thoughts on steps to take as part of a decision process.

11. Life style factors can influence risk. My personal crusade is to get people to balance their omega threes and sixes, and take some fish oil for the DHA EPA as the body is not very good at it. Women may need it more than men. If nothing else it is established and accepted that it will help with cardiovascular health, which is pretty fundamantal, and because so much of the bodies mechano appears to be similar bits used in different ways.

The decision must be yours. It must be hugely difficult. As an outsider it seems to me that you need to inform yourself as much as you can before taking the decsions you take to try and minimise the what if's and if only's afterwards.

There is lots of information on this site. Talk to your adviser on the impact of a short delay to allow you time to sort things out. Try checking out soms books in the library.

Re tamoxifen there is suggestion that it may be contraindicative for those that express high Cyclin D1. There are posts on this site you may want to check out and show to your adviser referring to trials. (use search engine)

It does take a little while and quite a lot of reading to begin to get a wider perspective on which a decision might be based.

I would reiterate that these are only general observations that have particularly struck me and no more.

So difficult for you


RB

[tousled1]

You must take charge of your treatment by being well informed and you couldn't have come to a better place. My personal opinion on your situation is that I would seek a second opinion. You stated that your oncologist is retiring in August so I assume that he is older. There have been and still are many strides being made in treating breast cancer. I would want a younger oncologist who is well educated on current treatments and fully aware of any clinical trails that are taking place. Good luck to you.

Susan,

My understanding is that Herceptin is now recommended for Stage 1 women. I am taking it and my diagnosis is similar to yours, though I'm not er/pr +.
I'm Stage 1, multifocal (1.05 cm), Grade 3, her2+, no vascular invasion, no lymph nodes, premenopausal.

I did 4 doses of AC, but not the Taxol. My onc. said the Taxol was one thing I could skip since I was early stage.

I would definitely get a 2nd opinion.

take care, Anna

The whole idea behind adjuvant treatment is to prevent a relapse and cancer from returning with a vengence. That's right should your cancer return it will be harder to treat and less responsive to Herceptin and chemotherapy than if you treated now early stage. If you don't believe me do a little research yourself. I would definately get a second opinoin from an aggressive cancer center such as the Mayo Clinic Rochester in MN or even Memorial Sloan Kettering in NY. Personally, I find older doctors much less aggressive. Perhaps that's because they lost their zest or they just know they won't be around long enough to face their mistakes, undertreatment failures etc.

and encourage him to read the FULL article -- which states that there is even one study showing that tamoxifen alone may ENCOURAGE growth of her2+ tumors rather than inhibit their growth or just be ineffective! Here is the abstract:

1: Ann Oncol. 2006 Feb 23; [Epub ahead of print] Related Articles, Links

Benefit from adjuvant tamoxifen therapy in primary breast cancer patients according oestrogen receptor, progesterone receptor, EGF receptor and HER2 status.

Dowsett M, Houghton J, Iden C, Salter J, Farndon J, A'hern R, Sainsbury R, Baum M.

Academic Department of Biochemistry, The Royal Marsden NHS Trust, London, UK.

BACKGROUND: Most women with oestrogen receptor (ER) positive primary breast cancer receive adjuvant tamoxifen after surgery. The measurement of tumour biomarkers should allow better selection of patients for such treatment or for therapies such as aromatase inhibitors. PATIENTS AND METHODS: Histopathological blocks of primary breast cancer patients who had been randomized to receive 2-years tamoxifen or no adjuvant therapy in two mature randomised clinical trials were retrieved. Immunohistochemical staining for ER, progesterone receptor (PgR), HER2 and epidermal growth factor receptor (EGFR) was undertaken. The primary endpoint was relapse free survival. RESULTS: 813 patients were included in the study. Benefit from tamoxifen was seen in ER-positive patients [Relative risk (rr) 0.77, ci 0.63 - 0.93]. ER-negative patients also showed a strong trend to benefit from tamoxifen (rr 0.73, ci 0.52-1.02) which was largely confined to the PgR-positive group. Amongst the ER-positive group, PgR-positive and PgR-negative patients showed similar benefit (rr 0.81; ci 0.65-1.02 and 0.70; ci 0.49-0.99, respectively). Patients positive for HER2 did not benefit significantly (rr 1.14; ci 0.75-1.73) but this group was small. CONCLUSIONS: Measurement of PgR status in ER-negative patients defines a group of patients that benefit from tamoxifen but would be excluded from tamoxifen therapy on the basis of ER status alone. The data are consistent with HER2 positive tumours being resistant to tamoxifen.

PMID: 16497822 [PubMed - as supplied by publisher]



Noone knows if Herceptin REALLY negates the resistance to tamoxifen therapy
or even if herceptin negates the resistance to aromatase inhibitor therapy (I have a fresh off-the-press article on her2neu resistance to ai treatment as well) Neither does anyone know if fulvestrant is the answer (its effect seems to depend on the ambient estradiol concentration)

Clinical trials to answer these questions have just begun and no results are available as yet.

There are papers out of Yale (I posted them earlier) on adding Herceptin to tamoxifen (preclinical studies done in a petri dish and/or mice, not in people) and an early study by Matthew Ellis on letrozole with Herceptin, I believe.

I believe the doctor you were consulting used the old ADJUVANT online computer program to estimate improvement of odds based on OLD PROGRAM which does not include her2 status. Those who are her2+ have a much higher rate of recurrence. They are relatively chemo- and hormonal-therapy resistant.

But the hormonally positive her2neu tumors are the ones they understand the least about as the 2 her2neu cell lines they study in most research labs are both hormonal receptor negative.

The oncoDx test gives very little additional information according to Dr. Dennis Slamon than ER, PR, her2 by FISH, and Ki67( a measurement of proliferation) If your insurance pays for it, you may consider it, of course

If you have a high Ki67 your tumor is multiplying rapidly and chemo MAY be more likely to help. At the San Antonio Breast Cancer Conference, the feeling was that all her2 positive invasive breast cancer (ie, not DCIS) should be treated with herceptin but Dr. Slamon suggested that to decrease cardiotoxicity the tumor's level of topoII should be tested, as only topoII positive tumors should require an anthracycline and other tumors could be spared the increased cardiotoxicity of an anthracycline. This is still cutting-edge and not generally readily available. His recommendation going forward was that
If someone offers you chemo and herceptin,
to see if it is worth risking your cardiac function by combining an anthracyline (like doxyrubicin) with herceptin have Topo II--which is available from Targeted Molecular Diagnostics (see Robin P's postings)

There is to date no foolproof way to determine if chemo is necessary for
your tumor or for anyone's individual tumor. Hopefully with time microgene arrays will be able to determine not only if chemo will be helpful, but WHICH chemo will be helpful.

Size used to be considered one of the most important prognosticators with respect to breast cancer. The tumor's molecular makeup is superceding that. There are several people posting at this site who started with microinvasion with DCIS only and then developed distant metastases--so I do not know if there is any "size" of her2neu that needs only surgery and radiation.

I gleaned the following not too nice statistics from a talk by Dr. Dennis Slamon:
Her2 positive tumors which receive no systemic treatment are more than twice as likely to recur than her2negative tumors and, once they recur, usually kill patients within one year vs within two years for her2negative

The good news is that those statistics have been superceded by the utilization of Herceptin which has cut the rate of recurrence in half (WHEN utilized WITH chemo) and there are a host of members of this board who can attest to 6,7, and 8 years survivals beyond metastasis!!

Does your oncologist treat more than breast cancer? It is hard to keep up with all the new findings, even for those who specialize in it. Having attended the San Antonio meeting and four other breast cancer meetings this year I saw few old faces (except some illustrious lecturers and they were not near retirement age) among the audience. Cutting-edge knowledge is discussed at these meetings.

Perhaps if you say where you live, members of the board could suggest oncologists for a second opinion or being presented at a tumor board (at specialized institutions oncologists, surgeons, radiation therapists, radiologists, nuclear medicine specialists and pathologists ALL GET TOGETHER and discuss a patient's case especially if the treatment is controversial. As noone knows the best way to treat hormone receptor positive her2neu + early breast cancer perhaps your case might interest them.

Inform yourself! Ask questions! Only you can DO THE HOMEWORK(noone cares about it as much as you do) and only you can decide how to weight the risks and benefits of different treatment options in YOUR particular case

Good luck!

[Cathya]

Strange, unusual things can happen with Her2+ cancers. I had negative nodes but because my tumor was large (3 cm) I was originally staged as 2a. My doctor originally recommended radiation only to follow my lumpectomy as, according to the statistics, there was very limited benefit to me with chemotheraphy. Later, during the same visit upon physical exam he found a tumor in my supraclavicular node which everyone else had missed. This "presentation" is very unusual but it does happen. Her2 likes to travel. A second opinion can't hurt.

All the best,

Cathya

[Brian]

Dear Susan:

My wife, Lisa, has been battling this disease for 14 years now. We attacked the disease when she was first diagnosed with as much vigor as we could. She was cancer free for 10 years when she had a recurrance, and we have been fighting it on and off ever since.

My advice would be to take as much treatment now as you can. If there is any question about taking chemo, take it and herceptin and everything else your can. This disease is very difficult to defeat and will lie dormant for years. The adjuvant stage is the point at which you have your best chance to cure yourself. You do not want to look back 3 years from now after a recurrance and say to yourself "Gee if I had only..."

Good Luck and God Bless.

Lisa and Brian

This links also relates to this topic - I post in case anybody reading this has missed it.

RB


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