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Old 05-21-2017, 01:36 AM   #1
Lilneenz
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Join Date: Mar 2017
Posts: 6
Lymphovascular invasion / survivors ?

Hello ladies
I'm new to the group - my diagnosis is grade 3, stage 1 multifocal totalling 2cm her2 pos, er/pr neg with lymphovascular invasion, 4 negative nodes - tumour within 5cm of DCIS. Ct and bone scan clear. (Scans requested as had back pain),

I'm in the U.K. - had left mastectomy first where invasive was discovered. Now on round two of fec-th, 3xfec and 3xth, I am trying to get perjeta added privately as have seen pre results from aphinity trial and know lots of US ladies are having this adjuvantly - not available adjuvantly in uk yet.
My main concern st the moment is lymphovascular invasion !! The oncologist seems so vague about it / she's vague about it all to be honest. She's not even sure I'll be having radiotherapy, but I think I should. I'm frightened about recurrence and can't work out how I can be stage 1 with lymphovascular invasion.
Am I doing enough ?? Is perjeta a good idea for me - how many ladies out there with positive stories like mine !!
Feeling so frightened so any help greatly appreciated !!
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Old 05-21-2017, 10:53 AM   #2
tricia keegan
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Location: Ireland
Posts: 3,323
Re: Lymphovascular invasion / survivors ?

Hi Lilneenz and welcome, I'm in Ireland so not a million miles away from you. Perjeta is given here as my friend just had it last year but when I was dx twelve years ago I just did chemo with herceptin and rads as I'd had a lumpectomy. The NHS entitles you to a second opinion if you think that may help and I remember reading a link on how to go about that so have a google or let me know and I'll try to find the link for you. Neg nodes is great news and Herceptin has been a life saver for me and I had three positive nodes. I have a friend who had FEC many years ago and just celebrated thirty years out although she was triple neg. I can't advise other than that but I'm sure many others will and just wanted to welcome you to the group and let you know you're not alone, hang in there.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 05-21-2017, 05:15 PM   #3
Nurse4u2day
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Location: California
Posts: 403
Re: Lymphovascular invasion / survivors ?

Hello Lilneenz... I had a diagnosis that included lymph vascular invasion. Dx Nov 2013 with IBC and nodes involved as well. I remain NED 3 1/2 years later. Hope this gives you some hope.
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11/13 Dx IDC left breast
11/13 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
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Old 05-22-2017, 01:10 AM   #4
JessicaV
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Posts: 169
Re: Lymphovascular invasion / survivors ?

Hi Lylneenz,
You and I have similar cancers: I was diagnosed in Jan 2014 with 2.2cm of IDC in a 6cm field of DCIS, no nodes involved, no metastases. Had Docetaxel, Carboplatin and Herceptin treatment and am now NED, and so far everything is looking good

I am sorry you have joined this club, and totally understand the terror etc of being at this point of things, and the desperate need for facts. When I was diagnosed , my oncologist said that 10 yrs ago, a diagnosis of HER2+ cancer was bad news, but that now, if you are going to have breast cancer at all, it is a pretty good one to get because the new targeted treatments make it so much more curable, and even with metastases it is much more effectively treatable that some other cancers. She said that with mastectomy and Chemo, my chance of recurrence in 5yrs was less than 2%, but without the Chemo and targeted treatment, that would have been about 40
50%.

Just came across some research about lymphovascular-invasion and prognosis:
http://www.cancertherapyadvisor.com/...rticle/252341/
that says having LV1 is similar prognosis to 1 or 2 positive nodes, and it increases the chances of local recurrence a bit. If they can target LV1 with radiotherapy in the same way they can target positive nodes, radiotherapy would probably make sense. But if they cannot target the LV1 radiotherapy may not be much use. And on the other hand if the targetted treatments hit LV1 growth hard anyway, you may not need the radiotherapy. These would be questions to get answers to.

Please do remember, either way, you still have an extremely high chance of kicking this cancer out of your system for good. Yes you have breast cancer, but it is now often a chronic illness or even a curable illness, not a death sentence. And I wish you all the best.
__________________
1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.

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Old 10-10-2017, 04:16 PM   #5
Lucy
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Re: Lymphovascular invasion / survivors ?

I also had lymphovascular invasion and was stage 1. My oncologist was not concerned about it - none of my doctors were. I was told it meant there were cancers cells in the blood vessels in my breast. That freaked me out because blood can move throughout the body so quickly and I worried that that meant there could be cancer cells anywhere in my body. I was told that it wasn't a concern and that the fact that no lymph nodes were involved was a good thing. It's still something I think about but I have to trust my doctors and I don't dwell on it much now.

That said, radiation was something that was possible in my case but it wasn't a given. I opted for a double mastectomy without reconstruction and since it was stage 1, radiation was not needed. I was told that if I got a lumpectomy that radiation was STRONGLY recommended (they can't make you do anything but they can tell you what will happen if you follow their recommendations). So your doctor may not mean to be vague but just seems that way because they deal with this day in and day out and may not realize you don't have all the information they do.

Good luck!
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Old 10-10-2017, 11:57 PM   #6
Lilneenz
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Join Date: Mar 2017
Posts: 6
Re: Lymphovascular invasion / survivors ?

Hi Lucy
Thank you for your message - I did actually go on to have radiotherapy to the chest wall over 15 sessions as was advised by the radiology oncologist to do so. I had a mastectomy. I'm a few weeks out now so just left with the herceptin but trying hard not to think about the Lvi. I've since had an ultrasound on my liver and pelvic area as I've been having pains but it was clear and I'm aching all over but it's been put down to lack of oestrogen.

It's great to hear from someone on the other side, Joe long have you been finished treatment are you on the UK?
Nina
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Old 10-11-2017, 05:03 AM   #7
Lucy
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Posts: 204
Re: Lymphovascular invasion / survivors ?

Hi Nina,

I finished treatment (including Herceptin) two and a half years ago. I'm in the US.

I'm curious about your comment that the aching all over being due to lack of estrogen. Are you taking a hormone blocker? I thought you were hormone negative. I briefly took hormone blockers and it did make me ache all over but I've been fine since I've been off them. I was slightly ER positive at diagnosis though.

It's good that your scans were clear though. That's got to offer some relief.
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Old 10-11-2017, 05:11 AM   #8
Melissa
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Location: Virginia
Posts: 97
Re: Lymphovascular invasion / survivors ?

hello Lilneeze,
You can see From my signature that I had node involvement and Lvi. My tumor was also close to chest wall so the radiation targeted that area and clavicle area where I had a positive node. In the beginning I felt every decision/move I made would bring my cancer back - i got busy with life, still think about it but help others by attending support groups and raising money for cancer!

I'm still here and feel blessed each day!
Best wishes,
Melissa
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2016 - 10 years!
04/2017 - 11 years!
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Old 10-11-2017, 03:58 PM   #9
Becky
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Location: Stockton, NJ
Posts: 4,068
Re: Lymphovascular invasion / survivors ?

I had a positive note and lvi. 13 years and I'm still here and so will you!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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