calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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I'm past the 2 year mark which is when most recurrences occur according to my doctor. I was also told that the recurrence risk drops significantly after that but I won't be relatively home free until the 5 year mark. I did not receive chemo, radiation, herceptin or hormone therapy.
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choccomouse, I hit my two year mark in May and had a similar diagnosis. Congrats to you and thanks for checking in!
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New to all of this. Waiting for surgery is very stressful. Tumor is 1 cm, +++, grade 3. I don't know lymph node status until after surgery. Docs have said surgery, radiation, chemo and Herceptin. With HER2+ is Herceptin and chemo the commonly recommended treatment? Any chance I'll be able to avoid those?
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keep movin - TCH will most likely be your treatment. Join us on the Triple Positive thread. There are many very knowledgeable people there to help you through the journey
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This is awesome. I sure wish researchers would do this - and more.
Thank you for this unscientific tally, dancetracer.
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You are so welcome - glad you found the thread helpful!
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Had an abnormal mammo last week so it was followed up with an ultrasound. Got the results back on Monday and it was determined that the nodules in the images were just fluid filled cysts, thank God. 8/18 will be my 3rd year NED.
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Choccomousse - happy you received good news!
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Oh thank goodness chocomousse! I have had so many scares like that - all, thankfully, have turned out to be benign fatty cysts. Each time it reminds me to live each day as fully as possible. Carpe diem!
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@Blownaway, my case was conferenced, and I also got a 2nd opinion. Herceptin was not recommended, only tamoxifen, as the tumor was over 90% reactive to estrogen. I was recently told the HER2 was not highly amplified
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I was told they had to get approval to give me my chemo therapy because my tumour was only 0.6 cm...and it was not usually given if tumour was that small. Received approval and had the following.....
I had 12 weekly TAXOL treatments in combination with getting HERCEPTIN every other week during that 12 weeks.
Once Taxol was complete I am continuing with HERCEPTIN until I have a total of 17 HERCEPTIN in all.
Began FEMARA for 5 years for ER+/PR+ once I completed Taxol.
I chose to have a Bilateral Mastectomy as I know I would be a wreck worrying about recurrence. Still awaiting Genetic Testing.
PS ..I am in Canada.
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hi ladies - introducing myself as I lurk on your thread
I had a double mastectomy in May due to my left breast having many areas of DCIS and unable to do a lumpectomy with clean margins. The largest spot (5cm lump) had microinvasion - the board of doctors where I'm being treated is reevaluating the pathology and sending it back to get a different stain because they believe I likely have more micro invasion than that one spot. I'll find out the results at the end of the week but it seems that even if no other spots found they were suggesting AC even with just this pathology.
I'm trying not to get too ahead of myself but this was a lot to take in. I guess once I know the results and I have an oncology score and I know the estimated risk numbers of recurrence then I'll feel better - I just want to make this decision and do it and move on.
Thanks for listening
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I forgot to check in (almost) I just celebrated my 11 year cancerversary on March 7th!
My Her+ was only 1.2mm- very tiny- but bigger then a microinvasion (DCIS was 1.5cm) At the time my Onco recommended Chemo & Herceptin only because she had no guidelines to go by...still 11 years later & it is a grey area.
I did not have any treatment (No Chemo No Herceptin) I did have a bilateral mastectomy- my decision
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Congratulations Dejaboo - so great to hear your update!!!! YAHOO on 11 years!!!!!!!!! Keep on keepin' on!!
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Congratulations, Dejaboo
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Here is another club I can join. The descriptive options in the signature are limited. My DCIS was 10+ cm. The pure impossibility of finding everything in something that large, even with an automated process is a decision-maker for me. Treat this thing aggressively, even though they found only 4 mm invasive HER+.
I will have my second Herceptin infusion on the 18th. This is such a relief, because I hated having to go out of town, being knocked out by the benadryl, and the bladder accidents. In town, conscious all the time, half an hour, and fewer side effects.
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My treatment has yet to be determined. today I found out my sentinel lymph nodes were negative, thank goodness.
I have 1.2mm IDC, high grade, HER2 +( grade 3). This was found when doing lumpectomy of a small high grade DCIS in one breast. I am pre-menopausal and 50 years old.
I meet with MO, BS and they are taking my case to the Tumor Board, all on Thursday.
To me this is a roller coaster ride never knowing what to expect. My BS seems to think radiation will be the recommendation but wanted to go to the Tumor Board and me go to the MO.
I am grateful to have found this group and to have others in my situation. I feel an immediate connection since this helps me to feel like I am not alone.
Good luck to all and thanks for all the sharing.
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rlws- I've been on this board since April and never seen this thread. Your diagnosis sounds a lot like mine. Initially the BS and the MO were unsure if it would be surgery (lumpectomy) first or chemo. I have dense breasts so it was hard to be sure of the tumor size. My MO said I would either do the 12 week Taxol with Herceptin or taxotere, Herceptin, carboplatin and perjeta regimen for the 12 weeks. Both possibilities had me doing the Herceptin or the Herceptin/perjeta for up to year after.
I ended up having an MRI to determine size and lymph node involvement - which it why would have tipped it to the TCHP. The MRI said my tumor was 1.4 cm with nothing seen in the lymph nodes. So I had the Taxol and Herceptin. I am finished with the Taxol and will start doing Herceptin just every 3 weeks tomorrow.
Today I go for a radiation consult to see what my course of treatment will be with that. I think most with HER-2 positive will have some sort of chemo, along with surgery and radiation therapy (unless you have a mastectomy instead of lumpectomy).
I am post menopause and 57 years old
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Thanks for the reply DogMomRunner!
I did have the lumpectomy already. Our situation looks similar except for the menopause and my tumor is smaller.
I think because the invasive tumor was small they are uncertain, but glad to have my BS going to Tumor Board and to see MO as well. It truly is hard to know the 'right' thing to do I feel. In reading through the board so many have had multiple times they have gone through, it does concern me and will talk to MO about that.
I really hope to have a plan soon as it is stressful as you know. I am grateful for this group so I can see how all are being treating around the regions of the US!
I am also a dog mom and runner! I truly miss running right now as I did have oncoplastic surgery with my lumpectomy so limited on activity still.
Good luck to you and your treatment! Prayers coming your way.
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Welcome new ladies! I'm not here very often at all any more, but I am glad you have found this thread and are connecting with each other. I no longer consider myself an expert on this topic but I am here to offer encouragement as you walk through the process. It isn't easy, for sure, but myself and many other long-timers who still pop in now and again should offer you great hope in terms of prognosis.
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Hi rlws- your DX is similar to mine in 2008. I am 1.2mm- Though my Her2+ IDC was grade 1 (which isnt very common) 45 at DX
I started with a lumpectomy (Only because my PS was not listening to me- I told him from day 1 I wanted a double mastectomy- just my choice)
My IDC was also found during my lumpectomy for DCIS-grade 3
I did go on to have a double mastectomy 6 weeks later so no RADS for me. 11.5 years ago they did not know what to do with me- they still are not sure- since our tumors are so small- yet aggressive.
I did not have Chemo or Herceptin. I hope you have a plan soon. It is a Rollercoaster! I will be interested to see what they recommend
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At first stage 0 dcis 2017 . Lumpectomy and only tamoksifen .
I am 39 years old.
Last year stage1a her 2 positive er+/ pr + , grade2 . Negative nodes.
Mastectomy , 4AC + 4TAKSOL with herceptin .
Now aromasine and zoladex
I am worried. I'm tired
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March 8th showed by biopsy, a 3 mm grade 3 and triple positive tumor. We had been watching it for over a year with mammograms every 6 months as it was very small. It was thought to be benign, even on the day of the biopsy. The phone call by the BS was difficult at best. I decided to attack it as aggressively as possible. On March 21, I had a lumpectomy with the path report showing a tumor 9mm in size. Chemo was started on April 29 with 12 weekly taxol and herceptin. I am currently doing radiation for 16 sessions with 2 more left. The herceptin continues until March 2020. Aromatase is planned for 10 years. Time will only show if it was enough. Blessings to all!
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Dejaboo, mine was tiny, and grade one. We opted for chemo and herceptin. But everyone has a good chance of getting a new BC. I can understand your opting for a double, just to eliminate the possibility of ever having breast cancer again. If I could have met my onco before surgery, he might have talked me into getting a double.
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Saw my MO and BS and my case went to tumor Board. I will be doing radiation and take tamoksofen for 5 years. Decision was mainly because of the smallness of my invasive tumor.
Glad to know the plan. Meeting with Rad Oncologist to set me up Thursday next week. Feeling grateful to just have a plan!
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How are you now lady ?
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My tumor was 6 mm IDC and 1,5 cm DCIS
ER 30 % PR 40 %
HER 2 POSITIVE
Ki67 30 %
Mastectomy
4AC AND 4 TCHP
AROMASİN
ZOLADEX
I AM 39 YEARS OLD .
I AM AFRAID OF RECURENCE
I HATE ...
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Hi ,Blownaway
Same diagnosis.
How are you now ?
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Hi all,
Wish I had seen this a few months ago, the experiences shared would have helped. Anyway here is my story, originally told DCIS back in April 20 after having pain and a hardening. Got my head around that as was told 'pre-cancerous' started on Tamoxifen as they weren't sure if there would be a delay in surgery due to Covid. When removed at Lumpectomy 2.5mm focus of invasive grade 2 er/pr + her2 +. I then had to wait 6 weeks for Lymph node removal, thankfully nothing found there. My oncologist then left the choice with me over Chemo/Herceptin, nothing documented either way to quantify the benefits.It was such a difficult decision, I felt well and really struggled with how having chemo would make me feel. I decided though to go with the treatment, finished chemo this Thursday just gone, still about 9 months of Herceptin to go but after reading here I feel so glad I went with the treatment. I cold capped 🤞 I experienced minimal loss from my head, hardly any eyebrows lol and minimal body hair. I’m just waiting now for start date for radiotherapy.
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moslmic, welcome! And yes, it's too bad that you didn't see this thread back when you were making your decision - your decision would have been the same but you might have felt more sure about your choice.
Glad to hear that you are finished with chemo!
Good luck with Rads. Now that you've found us, you might want to check out the Radiation Forum on this discussion board for advice and support with this next step in your treatment.
Forum: Radiation Therapy - Before, During, and After
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