TRIPLE POSITIVE GROUP

fightergirl711

Kattis this thread may help:
https://community.breastcancer.org/forum/67/topics...

the women there are very knowledgeable and helpful. According to your bio, you didn't seem to have lymph node involvement, so that is a good factor as well. Hang in there, and stay hopeful.

Kattis894

Thank you for the thread fighter girl...will ask the same question there...I am thinking about asking my Onc for an entire body scan once I am done with radiation. I know my nodes were clear this summer, but the fear for this thing spreading is still there...has anyone here done that with clear nodes?

DurhamGirl

Hi everyone! I read and lurk a lot but don't post much. There is such a great supportive group of women here!

I'm kind of freaking out right now. I have a small hard painless lump under my skin in my inner forearm. At first it was less of a lump and had some redness and irritation. I went to urgent care and started antibiotics for a suspected cellulitis infection (I was hospitalized for two nights with cellulitis in october), and the redness is gone but the lump is still there. It's a hard lump that moves around (i.e. not attached to the bone), but it feels very tumor-like.

I know it could be a million benign things (cyst? lipoma?) but my brain is fixated on cancer (sarcoma? skin metasteses from the primary tumor?). I am supposed to see my doctor on Tuesday but am trying to move the appointment to tomorrow because I'm freaking out.

Anyone have anything like this before? I can't calm down and am so scared!

ElaineTherese

Hi!

Could it be a ganglion cyst? I have one on my wrist. Google ganglion cyst and look at the images. Then, look at your lump. They're benign, though often cosmetically unappealing. I could get it fixed, but don't care enough to.

Best wishes!

debiann

I had a weird lump on my shin, freaked me out too, but MO said bc mets below knee are rare. I think the same is true for below elbow?? My gp told me what it was, something benign, but I forget what it was called. Had mine removed for cosmetic reasons so it was biopsied and it, as the dr suspected, benign.

Try not to worry. Good luck.

Anonymous

Kattis-I begged and pleaded with my late oncologist for a PET scan at 18 months. He finally ok'd it then and at 3.5 years although he didn't agree, but he also understood my mental stress and that it would make me feel better. It did. He passed away suddenly, however and there is no way the new one will agree to that.

I mentioned it at the five year mark and told me to have faith. Easy for him to say...but I'm doing better.

e12345e

Hi everyone, I hope you can share your thoughts on my current situation.

I was just recently DX with triple+ IDC also with a DCIS in the left breast. I already got a lumpectomy and sentinel lymph removal last week. I'm currently ~24 weeks pregnant, hence why I preferred to do surgery prior to chemo, hoping that it could buy me some time to start the chemo after birth of my baby.

The lump was measured at 1.7CM and all 4 nodes were neg. However, my surgeon just informed me today the pathology report shows there's still some cancer cells left by the margin of the IDC but doesn't know how extensive it is b/c she couldn't do a MRI on me. She said she'll talk to the pathologist and then bring it to the tumor board on Monday to come up with my suggested treatment plan. Meantime, my oncologist didn't make this meeting so I didn't really get a good sense of my risk if I choose to postpone all treatment until after the delivery date, which will be in ~4 months.

So I wonder if anyone was in a similar situation as me? What is the risk of waiting to start chemo for 4-5 months if there are remaining cancer cells after lumpectomy? I wouldn't mind getting another lumpectomy (as long it's safe for my baby), but my surgeon seems unsure whenever she'll get it all b/c she can't do a MRI? Isn't there another way to be sure? Ahhh, so frustrating.

Please help

- E

DurhamGirl

Thanks, Debiann! The pathology results from the fine needle aspiration were "inconclusive" so I am going in for a biopsy (punch? tomorrow. I'm still freaking out. I know there are many benign things it could be, but the words "atypical" and "inconclusive" on the initial path report are not comforting.

Tunegrrl

e12345e, reading your post we have a lot in common. Mine were triple positive, 16mm IDC and 7mm DCIS in left breast, clear nodes, first surgery had positive margins so i went back for more. I did chemo before surgery, though. I was concerned about timing between chemo and surgery, and surgery and rads, and i tend to research the heck out of things.

All that to say, here is my impression: i think the doctors will give you good advice. If they say better to do chemo soonish, i would totally go for it. Lots of people have had chemo in the third trimester and it seems to be okay. Waiting could be a little bit spooky. Four months seems like a long time to me, but i would trust the doctors and get a second opinion if in doubt. In a way, chemo in the third trimester would be easier than chemo with a newborn. Life is waaaaaay harder once the baby is out.

I would base the decision on facts and numbers. Go for your best chance of putting cancer behind you. Best of luck navigating your treatment options.

ElaineTherese

Ugh, Durhamgirl. Another biopsy! Hope it's relatively painless and turns out to be benign.

e12345e,

I agree with Tunegrrl that your doctors will be most helpful here. You have a lot of good questions about your treatment plan, and if you don't like the recommendations from your current team, definitely ask for a second opinion.

In terms of timing, I definitely think that chemo can wait until the third trimester, at earliest. Even if you weren't pregnant, the doctors typically wait at least a month after surgery before beginning chemo so your body can heal first.

Waiting 4-5 months seems longish to me. It's not just the chemo cells left over in your breast that you have to be worrying about; that's localized cancer. You want to get rid of the cancer floating around in your bloodstream and/or lymph system, looking for a new home. That's what chemo is seeking to wipe out. Grade 3, HER2+ cancer is aggressive.

Best wishes!

Keebee85

Hi e12345e

So sorry to hear about your situation. It's hard to say what the effect of waiting would be, but I noticed that you said your doctor couldn't do an MRI. It's considered safe in pregnancy to have an MRI. Did you talk to your OB about it?

Best of luck! I'm sure once your team has all the info they will make the best choice for you and your baby.

Here's some info on the MRI:

The American College of Obstetricians and Gynecologists' Committee on Obstetric Practice makes the following recommendations regarding diagnostic imaging procedures during pregnancy and lactation:

• Ultrasonography and magnetic resonance imaging (MRI) are not associated with risk and are the imaging techniques of choice for the pregnant patient, but they should be used prudently and only when use is expected to answer a relevant clinical question or otherwise provide medical benefit to the patient.
• With few exceptions, radiation exposure through radiography, computed tomography (CT) scan, or nuclear medicine imaging techniques is at a dose much lower than the exposure associated with fetal harm. If these techniques are necessary in addition to ultrasonography or MRI or are more readily available for the diagnosis in question, they should not be withheld from a pregnant patient.
• The use of gadolinium contrast with MRI should be limited; it may be used as a contrast agent in a pregnant woman only if it significantly improves diagnostic performance and is expected to improve fetal or maternal outcome.
• Breastfeeding should not be interrupted after gadolinium administration.

Hope this helps,

Kara

e12345e

Tunegrrl, thanks so much for sharing your experience. You're absolutely right, I need to look at all the #s and get a second opinion. My oncologist just emailed me today and said I could potentially still carry on with the pregnancy given the fact that my lymph nodes are clear. She did mention she wants to speak to my OB to see if we could possibly plan to deliver the baby as waiting 4 months also makes her nervous.

How was your re-excision experience? Were you putting under general anesthesia again?

Wish you the best of luck with your treatment!

e12345e

Elaine, yes, grade 3 HER2+ is really scary. I'll talk to my surgeon for a re-excision. I know it makes no sense to postpone chemo for so many months, but I cannot get rid of the fear that chemo will harm my baby, even if for the slightest bit. I'll def consult with my oncologist and another doc, just to understand any potential risk of postponing it. Thank you so much for your advice.

Keebee, thanks so much for sharing the info on MRI. It was strange that my surgeon kept blaming it on the fact that since she couldn't do a MRI on me, that's why she didn't get clear margins. Also, she mentioned how I insisted on surgery first vs. chemo first, hence why we're in this predicament now. Overall, it was a bad vibe. She's supposed to be one of the best, but I feel like she barely spent time listening to me. I would had been fine if she wanted to take a larger margin, I wish she asked before the surgery!

SSInUK

Hi there. No reason at all not to have MRI - specially as it's just the breast. Unrelated to cancer I had a complex pregnancy with acute pain that couldn't be diagnosed. I wasn't allowed X-rays or anti inflammatory pain killers, they were v careful - but they were happy to do an MRI and were categoric there was no risk to my baby (at 5 months) even though they imaged the pelvis and womb itself. I think you need to stand up to your surgeon - they can be bossy! Or just switch. A further lumpectomy seems like a good plan - and could you do radiotherapy ahead of chemo? As It's completely targeted. Is Herceptin viable during pregnancy, could you start that? An early delivery is another option?

e12345e

Hi SSinUK,

Yes, you're right. I need to stand up to my surgeon. She didn't even bother talking to me right before the surgery. Just sent a bunch of her minions. I only saw her when I was strapped to the surgery table and she was late! Even the nurses in the room mentioned that wasn't supposed to happen. They felt so bad that they played music for me

What made it worse was that she blamed the positive margins on the fact that I'm pregnant so couldn't get me a MRI. Doesn't she have some responsibility? I wanted to tell her before surgery to take a wider margin but I didn't even see her! She's actually supposed to be a really well-known and highly regarded surgeon but definitely acts like a diva. My husband actually didn't like her from the beginning b/c he felt a sense of fakeness. She also never apologizes for running late even if it's like 2 hours...sighs.

I believe the initial plan was to give me radiation therapy before chemo. Will find out more if that's still the case.

So far, my oncologist is nice and I like her. If I choose another surgeon, I don't know if they can still work together. I'll find out.

Thank you and everyone for being so kind.

Best, E

BeachBabyK

For those ladies that has TCHP and finished treatment, when did your hair start to grow back? I'm getting really discouraged but want to make sure that I'm nor jumping the gun!

debiann

Hang in there Beach Baby, everyone's hair grows at a different rate. Do you have any peach fuzz yet? How long has it been since your last chemo? About 3 months after my last chemo I had enough fuzz (maybe a 1/4 inch) that I stopped wearing a head cover. It took forever for the eyebrows and eyelashes to fill in.My eyelashes are still stubby and I'm over 2 years out.

twiggyOR

BeachBaby, my last TCHP was 12/29/15. When i returned to work on 5/5/16 following radiation I had a full head of VERY short hair. I know it's hard but you just have to be patient.

SpecialK

beach - here is lago's timeline photos - look for the dates in the corner to see her hair growth. Look for the NOV 12 post with the link. I had chemo just behind her, but my hair came in a bit more slowly initially, but then picked up speed. I went without a head covering at 13 weeks PFC.

https://community.breastcancer.org/forum/69/topics/707348?page=634#post_3777212

willa216

Hi - hope everyone is having a good weekend!

Something has just come up with insurance and I'm having a bit of meltdown. I'm triple positive with micromets in 1 node. We just received a bill for $39,000 for Herceptin. I was told upfront that my insurance was going to cover Taxol, Carboplatin, Herceptin and Perjeta. My Onc had to request special consideration for Perjeta use adjuvantly, which was approved. I'm so confused and surprised by this bill for Herceptin. When my husband looked up Herceptin's info on the drug manufacturer's site it says that Herceptin is only covered in situations where BC is hormone negative or there is lymph involvement. Is anybody here who is triple positive having to pay out of pocket for Herceptin?

I feel like I fell off the turnip truck. I know I wasn't playing with a full deck during surgery/chemo and my doctors and my husband were dealing with insurance issues, but this is a huge surprise.

Thank you. Love to all.

Mommato3

Willa, I had adjuvant Taxol, Herceptin and Perjeta. The insurance company denied part of my first infusion. I assumed it was for the Perjeta even though the infusion center had approval from the insurance company. Come to find out it was for the Herceptin. Crazy! I contacted the insurance company who had a conversation with the nurse that approves the chemo. It was approved the following day. I'm assuming they just made a mistake. Call your insurance company and have a chat.

SpecialK

willa - I don't know anyone who had to pay for Herceptin on this entire thread of TP patients. I think this is a billing error and you should address it with your insurance company.

Tunegrrl

Willa, what a terrible shock. I do agree though that it is probably a mistake. And even if it is not a mistake, there may be a way to fix it.

I'm triple-positive with clear nodes in Ontario, and Herceptin is covered. Perjeta is not. It is hard to imagine why your insurance would cover Perjeta and not Herceptin, since Herceptin has a longer track record and was the big game-changer for HER2+ breast cancer. Perjeta is more expensive, as i understand, and with not enough evidence behind it yet to make it available in Ontario. We all want it but the Ontario government is understandably conservative in approving coverage for new medicines. The fact your Perjeta was covered suggests to me your Herceptin invoice was just a mistake.

I'm sorry you have to deal with that stress. I hope it gets sorted promptly. Uncertainty bites. Such a roller coaster, this breast cancer crap.

Tunegrrl

P.S. One of my professors used to say there are problems money can solve and problems money can't solve; it is better to have the kind that money can solve. For what it is worth, even in the very-unlikely worst-case scenario here, you are dealing with a better kind of misfortune than a direct health issue. That would be more horrifying.

A few weeks ago when i was scared i might be required to have an immediate mastectomy, a good friend said to me, "it is great that you are now worried about losing your breast; not long ago you were worried about losing your life."

I hope you can find some calmness despite the uncertainty and fear. (I recommend warm showers and a half-dose of Ativan.) Keep us posted.

willa216

Thank you Mommato, Special K and Tunegrrl for your quick and kind responses to my insurance issue. I agree that it's likely just a mistake - and I'll of course talk with the insurance co tomorrow a.m. - I was trying to minimize weekend angst around here and you have helped so much. Tunegrrl, what your prof said is so very true - and your friend is very wise. Thank you for sharing.

Have a good week. XO.

coachvicky

My husband used gel cap therapy me. I did lose some hair after round 1. We thought "freezing" meant in the freezer. We found out that freezing in dry ice was the way to go. Had we used dry ice at round 1, I doubt I would have lost any head hair. I started round 1 August 22 of TCH. Now I am just taking Herceptin. Anyway, my head hair has already started to grow back. My lashes and brows are another story. They seem to have hit a block ... Not growing but not shedding either. Also, my hair is very dark. I thought that I was gray!

Blownaway

I am 2 years out and my lashes never came back like thet had been in spite of using Latisse. Many of them, both upper and lower, grow at odd angles. The outside lashes stay short and thinned out. I quit the expensive Latisse and started wearing false lashes.

ElaineTherese

I'm two years out, too, and my eyelashes are still scrubby. My eyebrows are also a little sparse. I used to use false eyelashes like Blownaway, but I'm not very skilled about putting them on and I've grown very lazy. I draw in my eyebrows every day with eyeliner. In any case, I'm amazed at how minimal my make-up application is now. I used to spend at least 20 minutes doing my eyes and face, and I'm down to 2 minutes (eyeliner under eye and fill for the eyebrows). To dramatize my eyes a bit more, I bought some bolder eyeglasses.

Anonymous

Hi group

As I come up on the 6 year mark, I just had my mri done to check the implants. my PS does that every two years. I convinced him to order it with contrast and without as normally he would just it without and I am so glad. My results are below, along with my response from my breast specialist. They have the new imaging machine that is stronger. And now I will worry for the next 6 months.

INDICATION: History of left breast malignancy status post bilateral mastectomy in 2011. Evaluate for implant integrity as well as high risk screening for cancer.
>
> COMPARISON: Prior breast MRI 11/21/2014
>
> TECHNIQUE: Bilateral breast MRI was obtained before and after intravenous contrast. The study was processed using a CADstream computer-aided detection system to optimize radiologist interpretation by generating multiplanar and 3D reconstructions, creating subtraction images from the dynamic contrast data and computing tumor volumes and dimensions.
>
> FINDINGS:
> AMOUNT OF FIBROGLANDULAR DENSITY: Almost entirely fatty.
> BACKGROUND PARENCHYMAL ENHANCEMENT: Minimal, symmetric.
>
> IMPLANTS:
> Patient is status post bilateral mastectomy with subpectoral silicone implant reconstruction. Bilateral silicone implants are intact without evidence of intracapsular or extracapsular rupture.
>
> RIGHT BREAST:
> There are a few scattered sub-5 mm foci of enhancement within the middle third upper outer quadrant 10:00-11:00 position (sagittal images 564-571 and axial images 148-177). There is susceptibility artifact surrounding these foci. Many of these foci demonstrate subthreshold enhancement. Overall, findings are most suggestive of evolving postoperative changes but short-term follow-up imaging is recommended.
>
> There are no suspicious masses visualized.
>
> LEFT BREAST:
> There are no suspicious masses or areas of nonmass enhancement.
>
> LYMPH NODES:
> No suspicious axillary or internal mammary chain lymphadenopathy.
>
> OTHER:
> Not applicable.
>
> IMPRESSION:
> 1. Status post bilateral mastectomy with subpectoral silicone implant reconstruction. No evidence of intracapsular or extracapsular rupture of the implants.
> 2. Probably benign scattered foci of subthreshold enhancement in the right breast as described above, suggestive of evolving postoperative changes. Recommend short-term follow-up breast MRI in 6 months to ensure stability.
> 3. No MR evidence of malignancy in the left breast.
> 4. No suspicious axillary or internal mammary chain lymphadenopathy.
>
> Attention Physician: A letter has been sent to your patient regarding the results of this exam.
>
> BI-RADS: Probably Benign Finding - Short Interval Follow-up Suggested (BIRADS Category 3)

Breast surgeon's response

I reviewed Jill's findings from prior visits and her current + past B MRI with radiologist. She has new "dots" on her lateral imaging which may be secondary to the fact that this was her first MRI on the 3 T magnet. Radiologist agreed with 6-12 m follow up B MRI to ensure stability. Last visit with her was 1/16 at which time she had no palpable breast masses. Ok with short term follow up as long as no new palpable concerns. Chace

Anonymous

My breast specialist called and is having me come in tomorrow so she can do a big "feel me up " exam just to make sure, so I feel better about that.