its back with a vengeance...seeking info

hope-is-all-i-have

Anybody with a similar diagnosis? Please pardon me for the long post. I wanted to be as detailed as possible.

My mum's breast cancer has returned with a vengeance. Back in Feb 2009, she (55 years) had 2.5 cm ILC (grade 2) in her left breast with 14/16 lymph nodes affected. ER weakly positive, PR strongly positive and HER2/neu negative. She underwent radical mastectomy, followed by 6 rounds of chemo (i can mention the drug names tomorrow) and then 25 doses of radiation. Continued with hormonal therapy of Femara (Letrozole). April 2010 PET-CT scan was clean with no recurrence or metastatis. April 2011 PET-CT scan also reported the same.

This time (diagnosed Oct 1 2011), its come back more aggresively to her right side...and its mixed with IDC and ILC (4cm, grade 3) with 4/14 lymph nodes and 2/5 from the axillary tail and apical tissue resp showing metastasis. ER and PR strongly negative but HER2/neu strongly positive (score 3). 2 weeks back, she underwent right breast radical mastectomy and now we are waiting for the doctors recommendation on next monday for chemo and radiation.

I have a few queries:

1) Doc says its an entirely new primary with no connection with the previous tumor. I find it hard to believe even after stronger chemo was given for ER+/PR+/HER2- case. According to him, stats say within 5 years 40% patients with same diagnosis dont get recurrence...Unfortunately, she fell in the other 60%.

2) reading on the internet with HER2 +ve tumors makes me very scared since this is apparently the most dangerous among the aggressive kind. Also some of the reports were before Herceptin was introduced and therefore may not represent reality. Also its claimed that Herceptin during chemo is more effective than Herceptin alone after chemo. What is the collective knowledge about this in this forum?

3) She has already undergone 6 rounds of toxic chemo 2 years ago. what are the implications of a second time? its also said Herceptin with chemo has hightnened side effects for the heart.

4) the doc has recommended radiation again too. But can it cause more damage than benefit as too much radiation is also not good for healthy cells. what are risks second time around?

5) what is depressing is that PET-CT scan did not pick it up 5 months back...I mean is there any better diagnostic tool which can detect it? doc says it might have been very very small when scanning was undertaken or it missed it completely which is possible since 1/3rd of ILCs (<1cm) under PEt can go undetected.

We could just waiting for a few days time before we know what drugs will go into her chemo and so forth. If you have any information reagarding the queries, please drop a line.

wish you all a great week and keep fighting!

MJLToday

Sorry to hear the bad news about your mom's cancer.  I know it seems hard to believe, but it is very possible that the chemo she took for the first occurence would not be effective at preventing or treating the 2nd occurence.  Also, doctors have specific criteria they use to determine if it is a separate occurence vs. recurrence of the original cancer.

Actually, having two separate occurences is better news than having a metastatic recurrence.  HER2 can be very aggressive, but with the right treatments she has a good chance of  surviving many years.

You might post in the HER2 and/or ILC forums for more specific information on treatments in that area, I'm not very familiar with those.

Best wishes to your family. 

dlb823

First, I'm so sorry about your Mom's recurrence (or new bc).  One question that crossed my mind as I read your post is, I wonder if they got her Her2- correct the first time around.  It's just a thought because if it was borderline negative and not reassessed by a test referred to as FISH, that might help explain what's going on now.  And it's not totally uncommon for that to happen.

The very concerning things you've read about Her2+ bc are, for the most part, pre-Herceptin, which it's commonly said has leveled the playing field for treating women with Her2+ bc. And, yes, Herceptin is best used with chemo, which the women in the Her2+ forum (click on Forum Index above) can tell you much more about.

MRI seems to be the gold standard for breast screening.  PET & CT are typically used to look for bc that has moved outside of the breast (metastasis).  MRI should pick up ILC if it's 2mm or more in size.  

I don't know where your Mum is being treated, but if she's in the US, I would highly recommend that she seek treatment at an NCI-designated cancer center.  Here's a list of those:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

They see the most breast cancer, so will have the most experience with unusual or difficult scenarios, as well as being on the leading edge (so possibly ahead of other places) when it comes to the latest research and treatment options.

I'm so sorry that she's dealing with this.  Hopefully, she has a medical team or can find a medical team who will have better results this time around.   (((Hugs)))  Deanna 

PS ~ One more thought... Did she have an MRI of both breasts the first time around???  4cm + 4 positive nodes seems like a lot to pop up between 4/11 and 10/11, if I'm understanding your account of her follow up screening correctly. 

dragonfly1

Hopeisallihave: I'm so sorry that your mom (and you) are going through this again. Please don't be too afraid of what you are reading on the internet about Her2+ tumors. They are considered more aggressive but much of the data that is floating around is based on statistics before Herceptin was introduced. Herceptin has completely changed the prognosis for those of us with Her2+ BC. If your mom's tumor is Her2+ then, yes, it will most certainly require chemo + Herceptin. It's recommended even for small Her2+ tumors with no node involvement (like mine). The general protocol is Taxotere, Carboplatin and Herceptin but sometimes other chemo agents are substituted. The Herceptin is an infusion and continues for 1 year. I am currently receiving Herceptin and it has minimal side effects. The risk of heart problems is low but there is close heart monitoring the whole time you are on it (I have a MUGA scan every 3 months-I've had no change in heart function). Regarding the PET scan, I was told by my MO that it can only detect lesions/mets when they reach a certain size so it often misses things that are just developing. There is a wealth of information on the Her2+ thread (it's a separate listing under forums). Wishing you all the best.

MJLToday

I just wanted to share this that I found while researching something for a friend.  This is one doctor's opinion, but it seems that a lot of doctor consider this some sort of "standard". (Notes in parentheses are mine).  Of course exceptions and differing opinions always exist.

In bilateral (both sides) breast cancer, it is important to know whether contralateral (opposite) breast lesion is metastatic or second primary, but the distinction is not always easy. Chaudary proposed criteria for the diagnosis of second primary breast cancer in 1984 as follows: (i) there must be in situ (in place) change in the contralateral (opposite) tumor, (ii) the tumor in the second breast is histologically different (appearance of cells under a microscope) from the cancer in the first breast, (iii) the degree of histological differentiation (well differentiated, medium differentiated, poorly differentiated, aka "grade") of the tumor in the second breast is distinctly greater than that of the lesion in the first breast, (iv) there is no evidence of local, regional, or distant metastases from the cancer in the ipsilateral (first affected) breast. Despite novel methods such as cDNA microarray-based CGH, Chaudary's criteria have been hitherto the most widely accepted method to distinguish second primary lesion from metastatic lesion. Using these criteria, we attempted to characterize synchronous (same time) and metachronous (different time) bilateral breast cancers.

http://jjco.oxfordjournals.org/content/37/7/487.full

hope-is-all-i-have

Hi

Thank you so very much for replying. I am indeed thankful to all of you. 

@MJLToday

I had a discussion with the doctor and in his opinion most likely its a new primary. As to the treatment with either case it will be the same.In accordance to the 4 criteria proposed by Chaudary, atleast 3 of them positively correspond. 

@dlb823

Regarding the HER2- status of the first cancer, I am having doubts now. At that time, 4 biopsies from different sites of the tumour was undertaken for ER/PR/HER2 status and decision about chemo/hormonal therapy was based on that. ER/PR/HER2 on the entire tumor after mastectomy wasnt done and I enquired if they preserve tumor samples. unfortunately, they keep them only for a year. It will always remain a mystery though my doc says not to worry about it as it was definitive then. This time, we tested the entire tumor and it says ER-/PR-/HER+ (score 3)..

My mum is in India and I am in Germany/Switzerland. I have a wonderful support system of close relatives and things are being taken off at home. I understand things maybe better in the NCI centers in US but we have put full faith on the doc we have. He has been great. So far i have been following all the development of the treatment and diagnosis and comparing them here and they seem to correlate. 

She didnt have MRI of the breasts undertaken and the doc said PET-CT is sufficient for her earlier cancer. maybe we need to rethink this. this years PET showed interval metabolic uptake in the subcarinal and mediastinal lymph nodes but the doc discounted them as per my mum's particular case. 

@dragonfly

the doc has recommended Abraxane (nanotech version of traditional paclitexol) along with Herceptin and dosage will be decided on height/weight etc in a few days. mostly weekly basis as its proven to be most effective. well also depends on how mum can take it in terms of side effects.  Herceptin will be continued until 1 year is completed. It seems that Abraxane works better than standard chemo drugs (taxotere/paclitexol/carboplatin) as it uses nanotech to reach more cells. It also has lesser side effects. I checked some other threads on abraxane and herceptin on BC and elsewhere. It seems that this is preferred treatment...What is your opnion about this? 

Btw I saw your sky diving video and you kicked some serious butt there! I will saw it to my mum ..thank you for sharing your 'jump of joy'.

hugs and keep fighting

hope

 

 

dragonfly1

Hopeisallihave I don't know as much about Abraxane as I do about Tax/Carbo/Herceptin but from what I understand Abraxane is supposed to have fewer side effects than Taxotere. Be sure to have your mom check on ways to prevent neuropathy. There have been studies about taking Acetyl L Carnitine to prevent neuropathy during chemo (they have focused on Taxotere or Carboplatin but the principle would be the same). I asked my oncologist (and a neurologist) if I could take 500 mg daily during chemo and they approved it. I ended up with mild neuropathy in my hands but it is now going away so I think it may have protected the nerves from permanent damage. Herceptin + chemo is the key to shutting down/blocking the Her2+ cells so the Abraxane + Herceptin is a good treatment plan. Herceptin is a remarkable drug and has really changed the prognosis for those of us with Her2+ BC at all stages. Best wishes to you and your mom:)