Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

Omaz

BlairK - Have a nice vacation!!

BlairK

I personally called Penn and succeeded in moving my wife's appointment up from Tuesday December 27th to Monday December 12th.  There is an outside chance that she could be seen on December 1st but that is unlikely to happen.  Penn is asking for a lot of information, all the doctor reports and notes, pathology reports, mammograms, MRIs, etc.  It is a bit overwhelming.  My wife was dealing with a "new patient coordinator" and was ready to give up and I got lucky and got through to the doctor's assistant.  At least she was able to understand my wife's medical situation and the urgency.  I also got the first and second oncologist to fax their notes to Penn and it has already been done with confirmed receipt.  The Breast Surgeon and Reconstruction Surgeon don't use e-mail and I-PHONEs/i-PADs like the two oncologists so it will take longer and I am expecting to have to go over to their office and personally get their notes and fax it in.  I have more patience and perserverance with this type of thing so I pushed through.  I also had a long talk with the first oncologist who I really feel comfortable with - the one who is recommending chemo and herceptin.  He told me that he has never had a recurrence with T1a/T1b after treatment with chemo/herceptin.  He has had recurrences with patients who chose not to have chemo/herceptin.  He described a patient with 2 mm who did not have chemo and herceptin and who had a relapse and died.  I asked about the delay in starting treatment and he said "nobody knows".  He thinks recurrence risk is 20 percent and chemo/herceptin can drop it to under 5 percent to even 2-3 percent.  I still need to tell my wife about all this.  That is all for now.  Again, Happy Thanksgiving.

SpecialK

Blair - Happy Thanksgiving and enjoy your vacation with your family.  I hope the last part of your post about the conversation with the first onc about recurrence is enough to convince your wife.

suzieq60

Blair - I like onc no 1 - he's the man. Good to hear you got the appt moved up.

Sue

Anonymous

Bucky-i have a bottle of ativan from when i told the first bs i interviewed that I was claustrophic as related to the scheduled mri. She prescribed a months worth! i use them judiciously. Even though I know if I needed them I could get more. Pristiq is enough and I really want to get off that too.



Blair-have a great vacation. Onc number 1 must be very lucky. There are a lot of people on this site and the her2support.org site that went from stage 1 to stage 4, and their tumors were under 1 cm. I cant read those often as it scares me too much. That is the only reason I sucked it up and went for all the treatment except radiation which I did not need with the mastectomy.

BlairK

My wife has pretty much made up her mind to have the chemo and herceptin starting on Tuesday December 20th.  It took her a while to get there.  She will still have the appointment with Penn and gain some insights on the treatment options as well as the decision.  For me, Penn would have to present a compelling argument backed up with evidence for not having the chemo and herceptin and taking the risk that the cancer will come back.  Oncologist two did not do that to my satisfaction.  These medical opinions need to be backed up.  The examples that Oncologist One gave are compelling - no patients (Oncologist One's patients) having chemo/herceptin had a recurrence and some patients forgoing chemo/herceptin with T1a and T1b had a recurrence and died.  Especially his story about a woman with a 2 mm tumor who sought many opinions, chose not to have chemo/herceptin, had a recurrence and died.   I think with effective side effect management and premeds my wife should come through it OK and hopefully avoid the experience that TheLadyGrey described.  The risk of Herceptin heart problems is 2-3 percent.  The risk of recurrence between Oncologist 1 and the debate by the five oncologists ranges from 5 to more than 25 percent.  I have heard enough stories about women with 2 mm tumors having a recurrence and not surviving.  HER2 is dangerous and high risk and needs to be dealt with.  Let me give you all a very clever saying that I heard that sums up my feelings about this - "Better to use an elephant gun to kill a fly early than try to kill an elephant with a fly-swatter later".  And now our vacation and five days without a computer or thinking about this.

BlairK

By the way, Penn New Patient Coordinator may have lost my wife's pathology and biopsy reports so my wife had to fax everything to the doctor's office and assistant.  What can one say about that?  I really have to keep on top of this when we get back from vacation.

BlairK

Dear fluffqueen1 - Did the patients under 1 cm who had a recurrence have treatment with chemo and herceptin or did they choose not to have it.  It is not clear from your post.

suzieq60

Blair - good news - we'll have to make sure she gets all of the correct premeds etc. Take note of Emend especially - supposed to be the rolls royce drug for nausea.

I would only have to read one story about a small tumour going to stage IV to make me decide - it is a really scary type of bc.

Anonymous

Blair-yes some had treatment. I started out finding info on the her2support.org site. There are several on there. And a few on the stage iv site here i believe. They went from stage 1 to stage iv due to distant metastases. Loved your saying. It is so true. Ask about taxol with herceptin at penn just to see what they say. I'd be interested.



Susieq is correct-get all your info on premeds and what they do iv wise. If your wife doesnt have a port placed, you should consider it. Much better than hunting for veins. Especially when you are starting treatment 5 days before christmas



Have a wonderful vacation and a happy holiday.

suzieq60

Good idea on the port fluffqueen - an essential if you are having 18 or more infusions - I loved it!!

suzieq60

Also, yes it's possible to end up with distant mets even if you have had treatment, the point is the risk is reduced by half. I was under no illusion I am totally safe but it's better to have acted than regret later.

AlaskaAngel

Since the research for use of trastuzumab alone is only now finally beginning in a few trials, it will be a while before any information is available from that. Without scientific proof that chemo plus trastuzumab works better than trastuzumab alone, deciding what to do is much more difficult.

Since trastuzumab with chemo has a beneficial effect for some HER2 positive patients and not others, the info that some HER2 positive bc patients who did not do chemo/trastuzumab recurred has to also be considered against the fact that there are also a fair number of patients who did chemo plus trastuzumab and recurred anyway.

As we know, oncs vary in their approaches to treatment and swear by their personal recommendations, even though the next onc does the same thing in favor of different treatment. This is called bias. Anecdotal information from an onc about his own patients is not as reliable as the results of studies done on a variety of patients seeing a variety of oncs.

Many patients who are offered chemotherapy are never provided with the opportunity for genuine informed consent in regard to the many "side" effects of chemotherapy and all the support drugs and radiologic procedures involved for testing.

Approximately 50% of those undergoing chemotherapy will experience major loss of libido and loss of sexual function, but this is consistently understated by medical providers during discussions about risks and benefits. Some oncologists are so biased in favor of convincing patients to do treatment that they merely summarize this problem by saying that the patient "will probably become menopausal", or that the patient is likely to experience "some vaginal dryness but there are lubricants for that".  A very good way to measure an oncologist's honesty about all aspects of treatment is to note whether or not the oncologist has demonstrated a willingness to be fully honest about such side effects, or whether instead they only mention those side effects briefly and then move on.

An informal poll conducted on the her2support website indicated that by 6 months after completion of treatment, 50% of those who did chemotherapy as part of their treatment had stopped having sexual intercourse entirely due to pain and/or lack of interest.

Additional indicators of honest information from the oncologist are 1) whether the oncology practice actively hires staff members who have personally undergone treatment for breast cancer; and 2) whether members of the oncologist's staff are over age 40 and likely to have personally experienced menopause or chemopause as a result of treatment.

It is hard for anyone to help a patient through all of the options while trying to figure out what it is all about.  However, any patient deserves accurate and complete information, and not just information favoring a choice made by someone else, whether or not that person has the "best interests" of the patient in mind. The key question is, would YOU want to be fully informed if YOU were the patient?

AlaskaAngel

suzieq60

I would think the lack of libido was more down to the usage of tamoxifen and arimidex than the chemo. What is your agenda Angel?

Omaz

AA - In previous posts we have discussed the effects of chemo on the ovaries and how that impacts ER+ cells.  Yes there is a negative impact on the body which presumably happens with menopause as well but quicker with chemo.  There is also the positive impact of removing estrogen from the system that you have talked about before as well.  Cancer treatment has far reaching impacts and I think perhaps because the docs deal with it daily they don't always realize how it is for the patient.  I did find at my center that there was a lot of support from the surrounding 'folks' like the resource center and nurses but I had to ask.  

racerdeb

BlairK,

Great decision!  I don't believe in "coulda, woulda, shoulda."  I agree that the HER2 is nothing to play around with, and it's fixable!  Like I told my husband last night, having one rough year to hopefully live out a long, happy, fulfilling life is really a small price to pay.  Good luck with all of your plans moving forward.

Anonymous

To all....I am 55, and was not menopausal. Chemo and/ or surgeries or combnation threw me into menopause. Hot flashes are the worst. It has been a low sex year, mainly because I had surgery every three months and was on arm restrictions and my husband was as paranoid as I was. There wasn't much interest during chemo but it was hardly an option.



HOWEVER.... Interest comes back.



In my case, at my age, I would assume many of those same issues would have been occuring shortly whether via natural menopause or ensuing chemopause.



My onc did have the discussion with me somewhar, but I also asked. Nurses were better but it was easier to discuss with women.



I think we have to go prepared with information. The docs, while experts, are human, like everyone else. They cant think of every possible thing in the conversations. And because every person is different in how they react, it is hard to know. For example, I had more side effects from the dose dense herceptin I receive now than I did during weekly chemo/herceptin. When I finally said something, I had researched it. My onc said while rare, I was not his first patient to say that. I asked him to slow the infusion to 90 minutes and it has made a world of difference.



And now....we cant eat canned soup because of bpa levels! Just saw the study. Sheesh!



I hope everyone has a wonderful holiay and enjoys a day of great food. I am giving u

My no refined sugar and white flour effective today through Friday and giving in to the all the good stuff!

AlaskaAngel

Susieq58,

The agenda for all of us is to speak up in the best interests of the patient, not ourselves or our experience or the caretaker's fears, rather than to have a black or white focus on options. If we knew exactly what treatment to use to accomplish the goal, it would be black or white. So being honest about all aspects of the treatment is the most honest way to present it.

Buying the lazy excuse that doctors don't have time or can't think of everything is to treat them as if they were children, and allowed to be irresponsible because they are "so busy". 

The most likely reason doctors are dishonest about the effects is because they don't ever experience them. When men DO experience them, the interpretation is that their experience with it is "different" than ours.

Here is an excellent current example of that male blindness:

http://news.yahoo.com/side-effects-may-spur-men-drop-tamoxifen-breast-140408893.html 

"we noted that several of our male patients were having difficulty with taking tamoxifen therapy, and these side effects appeared to be a little bit different to those reported with women receiving the same drug,"

It is possible that the effects for some are due in part to the tamoxifen or hormonal therapies as well, since they are usually given immediately following chemotherapy.  Do you have evidence to indicate that has been proven?  However, most HR negatives are younger women, who have difficulty remaining menopausal and thus do not have the same sexual response.

The point here is not to be dogmatic and to be as truthful as possible, including the unspoken aspects about doing any of the treatments. I am speaking up because a man who is focused on doing what is "best" for his wife, should also be sure that the deliberately secretive nature of treatment is fully exposed in her behalf as well.

Anonymous

I guess my experience has been much more positive. I dont feel like anyone held information back.



They always were asking about side effects and prescribing treatment to help. I saw my onc weekly that i had the combo and now everytime I have herceptin. He has prescribed for hot flashes, insomnia, queasiness ( which was given automatically), emla cream for the port accessing, supplement for joint pain, etc. He is very attentive. My BS was diagnosed and treated for colon cancer that turned out to be a misdiagnosis.



That very small study of 64 men says one in 5 stop. I would venture that there would be a significant number of women who stop due to se's also. It also doesnt mention the stage they were. It does mention that they came up with the number after configuring stage and other things. It doesnt seem to be a trulying qualifying study.



I dont remember finding anyone deliberately secretive male or female. i think Blair has done an outstanding job of researching all aspects of his wife's diagnosis, including side effects. However, no one, including all of us and the doctors, can predict exactly what she will or wont have until she has the first treatment.



We can only offer our own experiences in the hopes that it allows others to develop their own list of questions to best prepare themselves.

BlairK

My wife, kids and I had a nice Thanksgiving and vacation.  As of now, my wife is scheduled for the visit to Penn on Monday December 12th and for the first treatment on Tuesday December 20th which would be 9 + weeks after surgery.  She will have the pre-treatment scans and tests soon and also a pre-treatment consultation with the first oncologist.  There is still value in having the visit to Penn - perhaps they can shed some light on the treatment plan and also may have their own view on recurrence statistics and risks.  I will keep posting as soon as something new happens.  I am reading everybody's posts and appreciate it very much.

suzieq60

Welcome back Blair!!!

momofthree2011

Hello,

I had pretty much the same symptoms as your wife. IDC 1.5 cm, grade 3, ER+, PR-, Her2+. I had a BMX in Nov. 09 even though I had no cancer in the right breast. I had 6 TCH treatments with 18 Herceptin treatments, no radiation. The only problem I had being on Chemo was my iron levels were getting low so my dr. gave me an iron transfusion which helped a great deal. The Herceptin treatments just made me a little weak the first day of treatment. I just celebrated being cancer free for 2 years. I thank GOD everyday. 

Debbie 

BlairK

Do you believe in signs from above.  I sat next to a guy dressed in medical green with a textbook on pathology.  Turns out he was a pathologist specialized in breast pathology (and skin pathology).  He was able to tell me that the comment of "isolated nest of cells instead of a single sheet of cells" does mean anything of significance - it is mainly a description of the IDC.  He also confirmed that a FISH of 5.0 for HER2 is not worse or more aggressive than let's say a FISH of 3.0.  Above the cutoff point is HIGH and POSITIVE and below the cutoff point is NEGATIVE.  He told me that if it were his wife he would go for the treatment.  I think sitting next to a breast pathologist on a train is a sign from above.

Omaz

Welcome back BlairK!

AlaskaAngel

Hello BlairK,

It sounds like your seat mate provided a good opportunity to get a clearer understanding of the pathology report. Pathologists use sometimes surprisingly complex, specialized, and often exceptionally descriptive language that can be obscure.

I hope the U Penn discussion will allow further understanding of treatment and the possibilities for your wife.

AlaskaAngel

suzieq60

Looking back, if my tumour had been smaller ie under 5mm and if I had known what I now know about HER2+ve bc, I would have demanded chemo and herceptin no matter what size it was.

Blair - very interesting coincidence for you - it may just mean something

Sue

AlaskaAngel

Blair,

Everyone is going to view treatment differently and there is nothing wrong with that. Some find comfort in doing whatever is standard treatment, and get it over with and hope for the best, and some feel that treatment that hasn't changed or improved much in decades and still can't be predictable for the individual patient isn't comforting at all.

There should be lots of discussion pro and con for people to be able to make a choice that they feel is best for them. Some people want lots of reassurance and promises and encouragement regardless of the facts pro and con, and then get mad if it doesn't pan out. Others make up their minds to do standard treatment after consideration and just need encouragement to get through the long succession of treatment.

It is logically hard for me to accept the black-and-white thinking of chemotherapy based on occasional expensive large clinical trials that after decades still isn't predictable for the individual patient, and often only offers temporary effect.

To provide the broadest range of thought about ALL possibilities, I want to mention that one might want to review and consider the option of metronomic chemotherapy. When I was considering treatment, I did have a consult with the Cancer Treatment Centers of America and metronomic chemotherapy was being offered there.

Has anyone seen any major cancer center make the effort to run a clinical trial to determine whether or not metronomic chemotherapy with trastuzumab is a preferable option in regard to early stage HER2 positive bc? If the question isn't even being considered then we are back to the black-and-white standard therapy that hasn't improved much for decades.

Just another possibility for you to give some thought to, in deciding what to do.

A.A.

Omaz

AA - What is metronomic chemotherapy?

Omaz

for anyone else who didn't know - 

"The definition of metronomic chemotherapy varies, but generally it refers to repetitive, low doses of chemotherapy drugs designed to minimize toxicity and target the endothelium or tumor stroma as opposed to targeting the tumor," says Dr. Harold J. Burstein of the Dana-Farber Cancer Institute, who has led several early-stage trials of metronomic chemotherapy in women with breast cancer. "

AlaskaAngel

Hi Omaz,

Sorry to be slow, thanks for posting one explanation. On another thread, AnnNYC indicated that one objection to use of metronomic is that when given to metastatic patients it worked for slow-growing cancers but not fast-growing ones. However, I questioned that, in wondering if the problem wasn't a difference between slow-growing and fast-growing but rather the amount of tumor burden, since metastatic patients have a tumor burden to consider and early stage HER2 positive bc patients primarily do not.

A.A.