Advice Needed from Propeller Heads

Tom · 06-29-2009, 03:54 PM

Dear Friends at HER2Support,

I have been asked by my earlier mentioned friend to make a very important decision for her, and I must admit I am feeling a little weak in the knees about it.

As I may not have mentioned in the original post, she is contemplating enrolling in a clinical trial using a vaccine that has already shown promise in sensitizing the immune system to attack HER2+ BC cells. She needs to make this decision before she has her surgery. Now here comes the rub. It turns out that she had a prior lumpectomy four years ago for DCIS that was HER2+(+3)ER-/PR-, and the usual course of radiation therapy. Now she has a new case of DCIS that is also HER2+(+3) ER-/PR- in the same breast.

Conventional wisdom would automatically suggest a mastectomy for that breast. However, it has been suggested that she might consider having a second lumpectomy on the same breast that was involved four years ago.

The vaccine was in fact designed to stop HER2+ DCIS in it's early stages and prevent it from recurring. The vaccine will be given for six weeks prior to surgery, whether she chooses lumpectomy or mastectomy. Additionally, SNB will be performed at the time of either surgery. No repeat radiotherapy will be given.

I guess you can all see my concern at not following the standard protocol for a recurrent DCIS. I just don't know what to advise her. It would be great if she didn't need to undergo the mastectomy, and had another lumpectomy instead. If she does choose the lumpectomy after the vaccine, she would need to have a mastectomy later if there is a recurrence. She has no particular fear of either surgery (she is a tough cookie) but doesn't want to have to go through another surgery later if she doesn't have to do so, as it would be "inconvenient" as she says with her own brand of cold calm reasoning.

So, what do I advise she do? Does she roll the dice and have a lumpectomy, or take no prisoners and have the whole breat removed? Again, the vaccine has shown great promise in preventing HER2+ DCIS recurrences. I suppose I could advise her to go ahead and get the vaccine course, and see what imaging shows right before the surgery. If there is a clear response, it would add just a little information to her decision. I hate to ask you guys to help me make the call for her, but I need to know relatively soon. Thanks again for your help.

Sweating like the pig that I am,
Tom

Laurel · 06-29-2009, 05:10 PM

Dear Sweating Pig,

No propeller head here. I do like playing the odds, though, so here goes! Nothing clear on Her2 DCIS. If it were me, I'd want Herceptin, but that isn't an option for stage 0's yet. I would want something to treat the Her2. This vaccine at least offers that. The no radiation part bothers me a bit as it is standard protocol and well documented that it greatly decreases recurrence. However clearly it is not a part of the trial protocol.

Okay, Tom, here is how much of a pig I am. I'd roll for the vaccine. If I got anxious later on, I'd simply have the mastectomy! That way I'd have been treated for Her2 DCIS AND had the offending breast removed. Should go a long way to ensure my existence on this earth.

Yeah, I know, that isn't the unselfish answer, but you cannot argue with the wisdom, ethics yes, wisdom no.

Rich66 · 06-29-2009, 05:20 PM

Especially with the history, I would be very concerned about the accuracy of the work-up imaging in this decision. Each modality has its strengths and weaknesses. Maybe there's a way to employ as many as possible? I would also be concerned about making the decision for her. Careful about the pig/sweat remarks. PETA may be monitoring.

Laurel · 06-29-2009, 05:40 PM

Oh no! Not PETA!

Tom, you may find this helpful. It was posted today by Hopeful (I think).

http://www.asco.org/ASCOv2/Meetings/...stractID=30353

chrisy · 06-29-2009, 07:59 PM

Tom,

You know I'm not a propellerhead but at least I'm not in PETA.

Speaking from a personal opinion, if it were me I would go for the vaccine but also go for the mastectomy. You just don't want to mess around with Her2+ even if its "just" DCIS.

What is her doctor recommending? Ultimately of course it is her decision but if he/she is suggesting a second lumpectomy perhaps it is because it is a very small area.

Rich also makes a good point, the more surgery in the area the more challenging it is to get good images.

How does your friend "feel" about this?

Jean · 06-29-2009, 08:30 PM

Tom,
We know that her2 likes to travel and dr's. are now treating DCIS more aggressively than in the past.
Radiation is now part of treatment when just a few short years ago was not.

While the vaccine sounds promising...when it comes to Her2 I use the barn theory....once the barn door is open
well you know the rest of the story.

I would opt for the mastectomy and not hold much faith in the vaccine....I recently spoke with my dr. regarding
the topic of vaccines and he feels we are not there yet.

She certainly can try the vaccine but I would not use it as a treatment option since it is not proven just yet.

Wishing her the very best - please let us know how she is doing.

Kindest Regards,
Jean

Rich66 · 06-29-2009, 08:46 PM

Tom's original thread for reference:
http://her2support.org/vbulletin/showthread.php?t=40143

SoCalGal · 06-29-2009, 11:46 PM

Well, who asked me? I am neither a pig lover nor a pig hater. BUT sweating? YUCK. I agree with Rich - watch out for making other people's decisions.

To me, she IS having a recurrence. Hello? Same breast, same dna. Maybe because my propeller is not spinning, I am missing something. If it were I, off with the boob! Mastectomy, maybe some reconstruction. And...her doctor should cleverly position this as a recurrence and get her herceptin. This recurrence is an opportunity to get herceptin. There are woman on this board who went from dcis to stage four in one big jump. Tell your lady friend that she should be aggressive. What about diet/lifestyle changes? Her body is "making" cancer and I would take this second showing very seriously. Before it escalates. Hope this helps you!...good luck and blessings,
Flori

alicem · 06-30-2009, 07:20 AM

I agree with all of the ladies above. If it were me, I would have the mastectomy without a second thought. But that is me, looking back in retrospect. If reconstruction is a worrisome issue, she might look into the DIEP surgery. That is what I had and would do all over again, given the chance. You can do a search for it here to find some of my previous posts about the subject.

caya · 06-30-2009, 09:21 AM

I am also not a propeller head, but I agree with the majority of the group here - Her2+ is a sneaky nasty sucker - Flori said it all - recurrence in the same breast? hello? As I told my onc. and breast surgeon who really wanted to try and save my breast - I told them both - It's just my boob, my life is more important.

I also asked my BS what he would recommend if I were his wife - he said he'd been doing the mastectomy.

JMHO.

all the best
caya

Jean · 06-30-2009, 09:42 AM

Tom,
Just tagging onto this thread again.
What Flori mentions is very vital regarding herceptin.
While I do not know of anyone getting herceptin in the DCIS stage this is an interesting topic. Knowing that
the Her2 is sitting there in the duct of the breast, at what point can a women push for herceptin treatment.
Off label maybe? This reminds me when early stage bc was not given herceptin. I would certainly explore this with her dr. Please do keep us posted on your friend
and I send my best wishes.

Kind Regards,
jean

Lien · 06-30-2009, 12:08 PM

I agree with all of the above, and would like to mention that the cosmetic effect of another lumpectomy might not be very good. After 5 years, my scar still contracts slightly and on each subsequent mammo I can see the skin being pulled a bit more inwards. So if she's a tough cooky, I'd go for the mastectomy. And for proven treatment.

And as a coach I think you would be better off asking questions in stead of advising. It will have to be her decision, so you can help her by asking her to visualize the various options. E.g.: Suppose you go for option A, how would you be feeling? Would you feel safe? Would you be happy, whatever the outcome will be? Will you be convince that you've done everything you could to survive? etc. Do the same for the other option(s). That way she will find out what she really wants.

Just my thoughts

Jacqueline

Believe51 · 06-30-2009, 12:21 PM

Tom, all I cannot offer medical information because I know most about inflammatory. But prayers come in all languages and that I am fluent in. Sending prayers to your friends and to you too, I know you never expected to be where you are today. Yet a friend has summoned and you have shown up at her side, you are an awesome friend....to them and to us. Stay strong.>>Believe51

Tom · 07-01-2009, 10:41 AM

Dearest Friends,

All of you bring me to tears with your willingness to help at a moments notice. I know I am on dangerous ground here, both for my friend and I. Jumping back into the fray of worrying on a daily basis about a close personal friend was a gut wrencing decision for me, but I thought of what my Mom would have said about helping a friend of hers with this stinking mess. I also take into consideration that she is messing with a dangerous pitbull of sorts that will wreak havock on her if it gets out of the yard.

Let me respond as best I can to the stimulating answers you have all posted.

Laurel, I agree that this is a recurrence and should be treated as such. The option of more radiation therapy is out because of the prior course of radiotherapy according to her doctor and is unrelated to any requirement of the vaccine trial protocol. His protocol is quite liberal with respect to much other than that the disease be HER2+ DCIS. Also, thank you so much for the ASCO article. I found it fascinating to say the least, and will site it to her surgeon. This doctor is gonna hate my guts before this is all over. Oh well. I have always been interested in the strange response other areas of disease seem to have when their primery friend is removed. It's as if they know they lost their home base and go into overdrive to battle those trying to make them go away.

Rich, I was concerned about what diagnostics she would have, as again we are dealing with such a rascally rabbbit. As it turns out, the trial will provide tons of diagnostic testing including whole body MRI's before and after her surgery, as well as the latest tumor markers.

Chrisy, you are thinking what I have been thinking all day. Go for the sledge hammer while she can: Vaccine AND mastectomy. She is not obsessed with keeping her breasts intact mind you, but she is toying with the idea of not having to have one or both hacked off if she doesn't have to. I reminded her in the doctor's office that breasts were for nursing, so not to sweat it. Then I realized what a stupid thing I had said and apologized for my insensitivity. What if I were being told I needed to have one or both of my testicles removed? Geez...now that's an eye opener.

Jean, the barn door reference is not lost on me. Thanks for reminding me. They sure are hard to close afterwards.

Flori, I did ask the doctor if anything regarding the vaccine trial might later preclude her form getting Herceptin or other new drugs, and he said absolutely not. Asking for herceptin because of this "recurrence" sounds like a great question. I feel the air from your propeller hitting me in the face as I read your post.

AliceM, the construction issue is already being handled, as the surgeon has a team of plastic surgeons that operate with him at his request. Thank you.

Caya, another vote for the guillotine. I'm getting the message loud and clear now. Life goes on without breasts all the time. Stay alive to enjoy it.

Jacqueline, you are so right about your approach to coaching. I have already asked to have a long sit down with her and her two grown daughters. Sadly, her husband doesn't really seem to give two flying poops about much of it. I never did undersand that side of him. Then again, it isn't his body that they want to rearrange anyway, so who cares what he thinks. I confess they don't have the best relationship to begin with.

Marie, I don't have to say anything about your response. Just watching you in your daily struggle to keep your sweetie speaks volumes and adds support to my new mission. Thank you as always.

Well, this has been an intersting Internet session for me. Oddly, my computer is down and I am writing from the local library which my sweet Mother headed for so many years before retiring to battle one illness after the other. It is difficult for me to sit here where she walked around since I was a child, but I feel her presence as I read all of your posts and rack my mind for the right answers. I must confess that I might not have appreciated the significance of her disease at first blush, knowing that it was "just DCIS". Clearly this is nothing to take any more lightly than if it were a more advanced disease. It's time to slam the door on these hideous little cells while there is still time.

I cannot thank all of you enough for helping me with this difficult task. The pressure of worrying about somebody else almost overwhelmed me until this moment. Thank you all for your mindful input. Watch your home mail boxes. I will be sending new propeller hats to all of you. I am still praying for all of you wonderful patients and family members that are burdened with this disease.

Sweating just a little bit less,
Tom

StephN · 07-01-2009, 11:55 AM

Dear Tom -
You have taken on a burden that would make ANYONE sweat! If not from the load itself, or from the memories of all the hard work you did for Mom, just from the stress of getting involved in another person's disease.

Just wanted to point out that I feel that this woman NEEDS Herceptin and should get it however she can and NOT wait. You know what the stats are, or can find them easily enough.

There is a vaccine trial at the University of Washington which is CONCURRENT with recieving Herceptin. Right now we have Schoolteacher and Suthorn taking part that I know of. They both come from the south and have their travel, lodging and taxis covered (for themselves and an "escort").

Not that I have a particular bias from living here, but this sounds like a very solid approach to me.

And I do agree that if the previous rads did not eradicate all the cancer in that breast, it is time to ditch it. Having only one breast 24 hours a day is better than being dead 24 hours a day ...

P.S. "Getting involved with" does not have to mean "make the decisions" - just acting as a filter and passing on your not incondisiderable experience is a huge commitment.

Jackie07 · 07-01-2009, 05:17 PM

Just saw this thread - had to ask hubbie again what 'propeller heads' mean to him. [He's looking up the dictionary right now - must not be a term used in the 'old south'

]

The information provided here is wonderful. Thought I would 'bump' it up.

jhandley · 07-02-2009, 06:16 AM

Hi Tom
I had a recurrence not seen by ultrasound and barely by mammo in the same breast 4.5 yr after first lump. I wanted a mastsectomy first time but was talked out of it. If I had had it off then I might not have had a liver met second time as well as a 4 cm lump in breast. I am totally convinced that the "recurrence" was actually there all along but was not "seen" and was then shrunk by chemo and rads and then grew back to 4 cm over the next four years. An MRI of the breast could give a better picture of what is going on for your friend.
If it was me..off with the breast and on with the herceptin!
Jackie (down under)