Stage 1 IDC herceptin without chemo

Hello again Tennislady

Thanks to SpecialK for the very useful thread on small tumour size HER2. It doesn't apply to me in the regard that my tumour wasn't small ( ie 3cm ) but informative all the same. It was indicated in that thread that HEr2 tumours are ( more ) likely to spread via the bloodstream so even if node negative this is a big risk factor. Does anyone know much about this ? Whilst I know about the potential of spread via the bloodstream as well as via lymphatics I did believe that spread via lymphatics was the most likely - but is this true and is there a difference between Her2 positive and negative breast cancers ? 

As SpecialK advises, prior to Herceptin you should have an echocardiogram (ECG) to assess heart function and then monitoring every 3 months. This I have done and have been assessed ongoing fine. There are potential side effects but you should be monitored for these and as I said before I have been absolutely fine. Obviously everyone's reactions may differ but I emphasise that I have had no problems at all. I am very fit though and slim, don't drink or smoke and have a healthy diet so maybe that is a factor. That said, I have BC so my "fitness" didn't prevent that.

Your family female cancer history is a point, although cancer obviously does also seem to be random as well as hereditary ( few seem to be purely genetic caised by faulty genes, unless those faulty genes still have to be identified) and the causes are just not well enough known. I don't have many female relatives to make a comparison but my mother's sister did die of cancer in her age 50s ( bone cancer but I think it started as breast cancer but not sure, it wasn't found until it was in the bones, this was over 40 years ago when cancer diagnosis was very different ). I have struggled to ascertain what causes HER2 cancer and indeed why I have it but can find little data on causes. Not that it makes much difference as it's too late in our cases but if we knew the causes then it's a step towards trying to minimise recurrence I feel.

By the way I'm in the UK, most of members seem to be in USA, are you ?  

Also as has been pointed out, ER- HER2 tumours can't be treated with hormonal therapy ( Arimidex, Tamoxifen ) so it's chemotherapy and Herceptin on top of surgery and radiotherapy. As already also pointed out , surgery and radiotherapy may work alone but it's just not predictable .

Let us know if you go down the Herceptin route, to me it was a no-brainer, especially as I stopped chemotherapy after one session - but of course everyone has to make their own decisions aided by the experts. 

All the best to you all.

tennislady - FWIW I survived chemo and Herceptin with no major issues, but found that the Herceptin alone (the 11 infusions that did not include chemo also) were a piece of cake.  I did have a runny nose on occasion and toward the end a low grade headache, but nothing that Tylenol couldn't help.  I would recommend receiving your infusion over 90 minutes even though according to the dosing information provided to physicians it can be run as quickly as 30 minutes.  I received it over 90 minutes with chemo, but onthe first Herceptin only infusion they ran it in 30 - I had some aching for about 72 hours afterward.  I asked to slow it back down to 90 minutes (as per advice from a thread on this site) and never had a problem again.  There is also some thought that rapid infusion is linked to cardiac issues.  Hope it goes smoothly for you too!

Hi again

As I understand it, the first treatment is ALWAYS 90 minutes ( at least in UK ) and yes I think it was a higher "loading" dose. You then have to stay in the hospital for a further couple of hours in case of any reactions. This I did and all was ok. Thereafter I have had 90 min treatments ( but with no need to stay after this ) and no-one has suggested shorter durations although I did read that it could be administered over a shorter period but this was never suggested to me. I am sure you are right that it is better to get started on the Herceptin asap. My timelines were - diagnosed July 23 2012, op Aug 9, 1st and only chemotherapy Oct 9, 1st Herceptin Nov 15. My radiotherapy started Dec 11th ( so was running alongside Herceptin ) whereas you have had your radiotherapy prior to medical oncology so you have started eradicating potential stray cells in the breast area.

I trust that the Herceptin gets rid of this beast , good wishes to you.       

Tennislady,

Just a thought, but as you plan your stamina test, should you be thinking about precautions to help reduce any risk of making your lymphedema worse? Tennis is such a great sport for cardio and lots of muscle development, but I wonder if it's also a tough test for your upper body lymphatics. If you haven't seen these, take a look at the following guides about exercise and lymphedema. The first is for trainers, exercise instructors, yoga teachers, etc., and the second is similar but less in scope, for women who have or are at risk of lymphedema. There's no mention of tennis, but lots to think about regarding re-introducing exercise after a lymphedema diagnosis.

http://stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf

http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf

Exercise is good for those of us who have lymphedema, and muscle movement plays a key role in moving lymph. Not to mention how great it feels to exercise hard! I just hope your return to tennis doesn't have unexpected results.  For almost all kinds of exercise, slow-but-steady addition of effort and resistance is what research has shown to reduce lymphedema risk and problems.

Carol

Just seeing this post from you AA -- another eloquent one. How to absorb the heartless disinterest of our treating physicians?? I, too, have my many stories as I'm sure all of us do....

Dear Alaska Angel,

It's Tuesday morning, and yesterday I received a call from the radiologist saying that the contents of my brain cavity were "entirely unremarkable." I think that's the first time that being told anything of mine was "unremarkable", much less "entirely unremarkable", made me jump for joy!! Thank you all for your kind words -- and let's continue to believe that our cancer diagnosis does not define us.

Hi,

I'm happy I've joined this site. I've just filled two pages with questions to ask my oncologist tomorrow (first appointment with the oncologist recommended by BS). I've already scheduled an appointment for a second opinion next week.

I was diagnosed with stage 1, grade 3 IDC in January.  I am ER PR HER2 positive.  I had a bilateral nipple sparing mastectomy last month with expanders inserted .  My tumor was 1.9 cm and all 9 of my nodes were negative. 

I, too, am hesitant to undergo chemo.  I'm mid 40's and pre menopausal.  I'm skeptical by nature, but I thought it was curious that my pathology report from the surgery (Symphony Summary from a lab in CA) gave two probabilities for my recurrence:

29% within 10 yrs without systemic treatment (does not give # of patients)

9% within 5 yrs with chemo (435 patients, 1/3 of them also had herceptin)

To me, this is comparing apples to oranges.  10 yrs v 5 yrs? Also, what's the % for chemo alone v chemo with Herceptin?  I am wondering whether a hormone blocker and Herceptin would be as effective as poisoning my body with chemo?  

Also, did anyone else's oncologist order a PET scan post surgery?  I'm thinking I'm going to ask my oncologist to order that before I decide on any treatment.  I think it would be reassuring to know it hasn't metastasized in my bones or elsewhere.  I do understand that one tiny cell is all it takes and that a PET scan won't pick up on that, but somehow this seems like something that should be done with the aggressive HER2+ grade 3 status.

Thanks in advance for any input or insight you ladies can provide.  

hi rosemamma, i was very much against chemo..against any drug really.. i won't even take paracetamol for fever.. and now i'm taking steroids with each chemo session besides those chemo drugs.. and saw 5 oncologists in different hospitals just to cling on to the hope that one will tell me it's nonsense and i can get on fine without it.  I still don't like it.. am halfway through my second cycle of TCH (taxotere-cytoxan-herceptin).Making that initially tough decision helps, now i don't think much of it..besides just getting over it.. and fully reclaiming back my life.

wht's been told to me is that herceptin works better with chemo.. hence the need for chemo.. in fact, there were a few oncologists who told me that if budget is a constrain and i were to cut one thing from the treatment, to cut herceptin (because in my case, it probably adds to just a 1% benefit).

one thing an oncologist told me which benefited me was, that he's seen thousands go through it, and while it seems daunting at first because one is thinking only of oneself, he assured me that those who went through, never regretted it..

and also once there's unclear margins or scattered cells.. you really don't know how scattered the scattered is.. my brother's friend is an oncologist, his own mother has stage 4 breast cancer and what he told me was, "you only have one chance at it, and it's now" and this he say is because if it metasized later.. there's no cure, just repeat chemo.. again and again as it mushrooms all over.. there will be sporadic breaks but no real victory then.. so he advised me to go all out at it while it's early stage, early diagnosis. i'm sorry if what i'm sharing is not comforting rosemamma, i'm just sharing what oncologists told me, and what helped me made the decision to do chemo, as relunctant as i was then..  this i believe is because it'd work very well when there's full acceptance of the regime, and i went through hell to make that decision..and turned up happy for my first treatment in the hospital. My oncologist describes me as exuberant and the nurses and other patients say that with this attitude, i'll do fine, and i'd like to think, i am doing fine.. it's not a breeze, yet it's much easier than i expected it to be!

Hi yensmiles,

Glad to see you moving forward with whatever you decided is best to fit your situation, and that with enthusiasm, it is working out well. Different regimens have different degrees of discomfort for different patients and yours sounds very minimal.

Actually "doing" the treatment is one aspect to consider. The SE's are harder to estimate at time of treatment, so they are more difficult to take into consideration accurately in terms of your own reactions over time, longterm. Fully informed consent is as much as any provider can do, since they too cannot predict which patients will have which reactions during treatment and afterward. I did chemo myself, including complete hair loss, but did no trastuzumab. I am sure your care provider is knowledgeable, but I personally do regret doing that particular treatment and the lack of genuine informed consent -- especially in regard to the degree of loss of sexuality that the majority of breast cancer patients who receive chemotherapy experience. Information available includes the emphasis upon patients being asked to understand that care providers may not be adequately "trained" or may be "uncomfortable" about being up front with patients about this issue both before and after treatment, so patients "should" be sensitive and understanding about that lack of training and ability to adequately counsel patients in regard to that issue on the part of their providers. As a way of being more realistic about it, I would recommend patients who want  and are seeking more accurate information to perhaps read such threads here as "I want my mojo back", to get actual patient feedback about it. That way they can consider discussing any of it with their providers while their providers are actively providing them with the treatments. Since my provider failed to discuss any of that with me prior to treatment, I didn't have any opportunity to consider it in making my decisions. We are all adults here, so I don't think there is any need to hide the concept or suggestion.

As has been posted, the results of ovarian ablation by various means (as well as natural menopause) differ among patients. Yet for some, those effects may be part of what is necessary to prevent or delay recurrence. That is what is generally not clearly explained to patients at time of deciding about treatments.

In my personal situation, based on my own preferences, had that been made clear to me at time of decision-making, I would have declined chemotherapy and would have chosen ovarian ablation achieved by other means. Instead, I received misinformation when I asked about this. That was over 10 years ago. I would like to think this is changing. Not everyone wants to hear it, and some will not listen to it, but the discussions and shock and surprise voiced by so many current patients after completing treatment about lack of libido and physical changes following treatment clearly indicate just how commonly this entire issue is still avoided among providers, downplayed, and often buried during decision-making.

There is a lot of discussion about loss of hair, nausea and helpful medications to take, neurologic side effects and how to deal with them, etc. This is encouraged, since it helps to keep patients distracted from discussing sexual issues. There is very little discussion at that tense time about the emotional and physical aspects that follow later, and relatively little or no counseling for sexual issues provided after treatment to patients. For many who post it is clear that the pat advice for use of "libricants" is insufficient -- and misleading to those who have been enjoying a satisfying sensuality, who tend to think at time of decision-making that  they are likely to be an "exception".

Encouraging patients to be understanding that "some" providers may not have the interpersonal skills to adequately include such discussion in advance of treatment, is to encourage inadequate disclosure practice to continue among providers. In effect, it promotes failure to honestly disclose issues that likely are of significance to patients at time of decision-making, to be discovered instead by patients after the fact.

The actual choice of treatment should truly be left to the patient, not based on failure to offer information to the patient for the patient to consider.