HER2 Support Group Forums

HER2 Support Group Forums (http://her2support.org/vbulletin/index.php)
-   Profiles In Courage (http://her2support.org/vbulletin/forumdisplay.php?f=30)
-   -   New to this site: My story (http://her2support.org/vbulletin/showthread.php?t=59631)

JJ201349! 11-30-2013 02:37 PM

New to this site: My story
Dear Friends,

I am new to this site and wanted to share my cancer details with you:

2009 - Routine mammogram = non palpable right breast lump
2009 - Right breast biopsy = negative
2009-2012- "normal" mammograms (How could I had normal mammograms with a clip in my right breast. They usually leave the clip after performing a biopsy to "watch" the mass)
2013 March or April (more or less) I started to feel a hard lump and pain (right breast), but decided to wait until my scheduled routine mammogram in June.
2013 June = "suspicious" lump right breast (yes, the same breast that was already biopsed and was negative in 2009. Unknown if this was the same mass that was initially biopsed in 2009 or a new mass).
2013 June = + Breast ultrasound and + breast biopsy
2013 June = Diagnosed with Infiltrating ductal carcinoma Stage II
2013 July = Bilateral mastectomy. Mass was 6 cm!!!! so I was re-staged to stage IIIa. ER+PR+HER+++
Axillary Lymph Node Dissection 2+/17 nodes. Micrometastasis to one of the lymph nodes
2013 July = PET & MUGA negative (normal)
2013 August = Started A C T H. Already completed Adriamycin (A), and cyclophosphamide (C), and currently on paclitaxel (T) and Herceptin (H) Once I finish paclitaxel in December, will continue with Herceptin alone every 3 weeks until August 2014.
2013 October = MUGA negative (normal)

I was advised to proceed with delayed reconstruction due to radiation treatments. I am scheduled to start radiation late January or early February. Reconstruction will follow at some point maybe summer or fall.

For now, I have tolerated the chemo pretty well. No major side effects. Had abdominal/stomach pain, which improved with Prilosec twice a day. Had an abdominal/pelvic CT and now have a referral to see GYN next week.

I'm starting to feel pain in my fingertips and my nails are getting darker. I hope that I don't develop bad neuropathy from the paclitaxel.

My treatment "guarantees" success only for 3-5 years, according to my oncologist :(

Many blessings,

Laurel 11-30-2013 06:06 PM

Re: New to this site: My story
Hi, JJ!

Welcome to the site! I am triple positive like you (Er,Pr,Her2 +). Your story is tough to hear because of the doubt it raises regarding the possibility that your initial mass was missed and grew over time. I do know that a Her2 positive mass can grow VERY quickly, perhaps this is simply a new growth.

Now I think it is important to adopt a "it is what it is" attitude. Dwelling on whether your doctors failed you will not be helpful. Fortunately with the advent of Herceptin and other monoclonal therapies for Her2 positive cancers you can wrangle that monster in and keep it under wraps--no guarantees, but the longer you remain without a recurrence the better your chances. For we triple positives the chance of a late recurrence exists just as it does for any hormone positive breast cancer. That said, with time you will begin to live fully again once all the treatment has ended and will think less and less about cancer.

Stick around and join in the discussions. We hold one another up and understand what you are feeling better than those who have not walked in your shoes. I hope you had a good holiday (if you are in the States).


'lizbeth 12-01-2013 12:38 AM

Re: New to this site: My story
Welcome JJ,

I can hear the frustration from the delay in finding the cancer. I would suspect that you have dense breast tissue. Did you ever have an ultrasound or MRI?

The best advice I can give to you is to be more proactive on seeking 2nd opinions. Physicians are human, subject to human error and limitations. It is amazing what you can learn on a 2nd or even a 3rd opinion. Right now I'm looking at the comment your oncologist made that your treatment only "guarantees" success for 3-5 years and I am not personally comfortable with that statement. There are no guarantees with cancer. If you check the American Cancer Society website the 5 year survival rate for stage IIIa is 67%. But that lumps everyone in, including luminal Bs & triple negatives who are more likely to have a recurrence. You should do well despite the delay in treatment. I personally expect that you'll be around for decades :)

With the paclitaxel you might try icing your hands and feet during chemo to help ward off neuropathy. I received B12 injections to help with this issue.

Penny is taking Biotin to help avoid the nail issue. You might want to give that a try.

Keep us posting on your progress. Sounds like you had a good plan with the chemo, radiation and reconstruction.

JJ201349! 12-03-2013 06:53 AM

Re: New to this site: My story
Thank you Laurel!

You are absolutely right :) Although, sometimes I wake up in the middle of the night and wonder what if.....the best attitude is to focus on getting better. I can't believe that it has been six months since my diagnosis. I have been so busy with work, chemotherapy, and all the appointments that sometimes I feel that I need an assistant, just to keep insurance paperwork in order and make follow up appointments.

Looks like you have done really good and I am sure that your positive attitude has helped.
Many blessings,

JJ201349! 12-03-2013 07:14 AM

Re: New to this site: My story
Dear lizbeth,

Thank you for your words of encouragement. I can't remember my MD's exact words, but it was something like the risk of recurrence will decrease to 10% for 3-5 years, with all the treatments (chemo, rad, hormones). I kept thinking, what happens after the 5th year?

I will definitively ask about using vit B. I knew about using ice for things such as mucositis, but never heard about icing hands. Do you mean submerging hands in ice-cold water during the chemo infusion or using an ice-pack? Wow, very interesting :)

Many blessings,

Aussie Girl 12-03-2013 05:26 PM

Re: New to this site: My story
Hi JJ,

Welcome to the site. How many rounds of chemo do you have left? I'd do the ice water thing for the hands and/or feet if you have any paclitaxel left to go. You can try ice bricks too depending on the chemo room set up.

I've just had my last heavy chemo and will have the first single infusion of herceptin in mid December. I was diagnosed about the same time as you but had the TCH protocol which was a little shorter than AC-TH (both protocols have similar survival.)

There is evidence that 10 year disease free survival with chemo and herceptin is about 74% and overall 10 year survival is 84%. The keeps changing because they keep introducing new therapy.


Two to three years seems to be a danger time for recurrence and once past that the recurrence rate is less. I am telling myself I've done everything I can and now it's about recovery and working on appreciating every moment.

Take care

Aussie Girl

PS. Laurel - your cat looks like a younger version of my cat, named Cactus. Is yours a burmese?

'lizbeth 12-03-2013 07:38 PM

Re: New to this site: My story

Sorry - I missed your post earlier.

My nurse brought in plastic tubs of ice and I stuck my hands in them. Brrrr . . . lol! But I was examining diamonds using tweezers at the time of treatment. I was afraid if I developed neuropathy I would start launching them across the lab - very embarrassing!

The affect on my lower legs and feet was greater, so perhaps it worked.

Yes, each treatment lowered the risk of recurrence. And as time goes by the risk of recurrence drops. There is a pattern that differed based on ER positive or negative.

There was a time when the risk for Her2 positive Estrogen negative cancer was thought to be the greatest in the first two years. I breathed a huge sigh of relief at passing 24 months and remaining NED, then each year the risk percentage dropped. As was explained to me at 5 years my risk was the same as the general population for cancer.

Her2 positive / Estrogen positive continued to have more recurrences later then Her2+/ER-. Studies were done (and if memory serves me right still ongoing per fellow board members) about 10 years of treatment instead of only 5 years for hormone positive cancers. There was a pattern of recurrence that peaks about 20 - 24 months drops then peaks again at 5 -7 years.

You might find this ASCO article interesting:


I see you have your final Taxol treatment in December - good for you!

JJ201349! 12-11-2013 03:41 PM

Re: New to this site: My story
This is great information, thank you!

JJ201349! 12-11-2013 03:46 PM

Re: New to this site: My story
Hi Aussie Girl,

I have 3 more treatments (paclitaxel & Herceptin) and then, I will continue with only the Herceptin every 3 weeks. A friend also recommended using massage therapy. So far the pain in my fingertips and nailbeds is mild. I hope that I can complete the next 3 infusions without problems.

Good luck and many blessings,

ren 06-29-2014 05:04 PM

Re: New to this site: My story
I am going to start that same treatment . 12 weeks of taxol and something else + herceptin for 1 yr every 3 weeks. I had her2+ And Er + Pr+ no lymph node involvement. I had mast on left side. I have an expander that will have to wait now until after chemo. That in and of itself is uncomfortable.

I'm am very scared to start chemo and with all the bad stuff that can happen.

'lizbeth 06-30-2014 10:41 AM

Re: New to this site: My story

You should have your first chemo earlier in the week and have written instructions of the numbers to contact if you have side effects that you need assistance with.

Think of the side effects that concern you most. If you post I'm sure the ladies on this board have experienced it and have a plan of what helped the most.

Your medical team has various medications that minimize the negative effects of chemo and will prescribe steroids, anti-naseau meds, etc. If they have not covered this with you make sure you have a nurse explain it so you feel comfortable knowing what to expect.

"bad stuff" might not be as bad as you think. That is why you pay the medical staff the big bucks - so that they can take great care of you while they help you eliminate the cancer.

All times are GMT -7. The time now is 04:40 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2020, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007