 |
07-02-2011, 06:36 PM
|
#1
|
|
Junior Member
Join Date: Jun 2010
Location: los dolses
orihuela costa
spain
Posts: 3
|
no confidence in onc or radiologist
Hi everyone, I usually just read on this wonderful forum and it has kept me sane the last year but I am so angry with everyone I just had to vent.
I saw my onc for checks after finishing last herceptin in June and got results from mammogram. He said that there are some new microcalcifications which are linear (dont really know what that means) but he said I shouldn't worry too much about them. I then asked him what about the 0.8mm tumour that was left in my breast after surgery? he didn't have an answer for me and just said that I must have confidence in the radiologist! I reminded him that I was supposed to have that lump checked on ultrasound every six months and he looked at me as though I was mad. He said that the radiologist didnt think that was necessary and nothing showed up on mammogram. It never does, I had 3 malignant IDC which never showed on mammo at all only on mri. So now I am really worried and confused by all this. New calcifications and the remaining lump just being ignored. I do have very dense breasts and assumed that I would receive ultrasounds as well as mammos but not to be! I am now very tempted to go private and have an ultrasound but really cant afford to do this. My onc also refused to have my cath-port removed, he said I should keep it for at least another six months because it was very expensive.
__________________
dx Feb 2010 withIdc 1.8 and 1.6cm plus 1 benign tumour 0.8mm. Her2+++ ER-PR- in right breast
DCIS, Her2+++ ER+5% in left breast, unclear margins
Lumpectomy April 2010
second surgery clean margins
Benign tumour in right breast not surgically removed because they couldn't find it at the time!
TCH x6 with Herceptin in June 2010
36 rads both breasts October 2010
January 2011 finished rads and started Femara
Brain MRI clear
Ultrasound on benign tumour no change
Finished Herceptin June 2011
Mammogram June 2011 results-new calcifications linear in ducts, birads 3 6month follow up. change to aromasin due to trigger thumbs
mammo Dec 2011 no change in calcs
MRI on spine, 3 herniated disks phew!!!!
Jan 2013 All tests clear!
Denise
Last edited by spanisheyes; 07-02-2011 at 06:38 PM..
Reason: forgot to add
|
|
|
|
07-02-2011, 08:34 PM
|
#2
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Re: no confidence in onc or radiologist
If I were in your shoes I would try to see another doctor for a second opinion. It might also be best to find another doctor at another medical office or hospital.
Take care of yourself. Feel free to drop by www.her2support.org anytime. |
|
|
|
|
07-02-2011, 09:23 PM
|
#3
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
Re: no confidence in onc or radiologist
I agree 100% with Elaine. I don't know the limitations of the National Health Service in Spain, but if you can shop around for a more compassionate and proactive doctor, I would immediately.
Best wishes. Please keep us posted.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
|
|
|
|
|
07-02-2011, 09:55 PM
|
#4
|
|
Senior Member
Join Date: Jun 2007
Posts: 2,210
|
Re: no confidence in onc or radiologist
I agree with the others, that you should get a second opinion. You may have to pay for the consultation but it would be worth the peace of mind and the clarification that it should provide.
Does the facility where you get treatment have any sort of patient advocate or social service who could intervene for you?
Keep the faith. Let us know what happens.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
|
|
|
|
|
07-02-2011, 11:58 PM
|
#5
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: no confidence in onc or radiologist
I agree with the others, get a second opinion from an oncologist and a radiologist even if you have to pay out of pocket. And if you find a doctor you like, switch doctors. I'd be very surprised if you aren't allowed to have a second opinion.
In France you can get as many opinions as you like and go anywhere in the country for them (pay your own airfare) and of course change doctors easily - I've done that on several occaisions (oncologist, radiologist and hospitals) and my universal 100% coverage just followed me. So I'd find it unusual, if another EU country was very different.
You definitely must have confidence with your oncologist.
health and happiness
love sarah
~
__________________
|
|
|
|
|
07-03-2011, 12:56 AM
|
#6
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: no confidence in onc or radiologist
After 'they' had missed my recurrence for four straight years, I insisted on bilateral mastectomy even though there's only one tumor in the right breast growing out of the residue cells. I don't care about what statistics say any more. I just care about my own health, my own body, my own unique situation.
I also insisted on a hysterectomy/oophorectomy last year after receiving the genetic testing result and learning about a new family cancer incident.
When I went to my family doctor ask for an MRI after experiencing 'vertigo' type of sensation last year, he questioned my sanity (because he was not aware of my brain tumor history) It turned out I did have tumor growth (Central Neurocytoma - unrelated to BC) and I wasn't crazy!
I now do my own research; request my own referrals; and take charge of my own destiny.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 07-03-2011 at 07:03 PM..
|
|
|
|
|
07-03-2011, 02:15 PM
|
#7
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: no confidence in onc or radiologist
I have two friends in Spain who moved there from the U.K and are receiving wonderful care from their Onc. If you'd like to send me a pm with your location maybe they can help to suggest another opinion close to you?
This does'nt sound right to me either and most of my friends with dense breasts are getting mri's, but certainly an US is a must!
You're quite right to question this Dr!
P.S Sorry I've just seen your location on your signature, I have a friend in Sotogrande, another in Calpe Alicante and a third not too far from Barcelona, is this anywhere near you???
__________________
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 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
Last edited by tricia keegan; 07-03-2011 at 02:17 PM..
|
|
|
|
|
07-04-2011, 03:12 PM
|
#8
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
Re: no confidence in onc or radiologist
Even if the docs think you shouldn't do any other tests, they should at least explain why they make those decisions. And if you don't feel comfortable with the way you are treated, find another doctor. Travel to another hospital if you need to. Go online and find a good doc in your area, someone you can trust.
This is your life, your body and your fear we are talking about. It shouldn't be their decision whether you get tested or not. It should be at least something you decide on together.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
|
|
|
|
|
07-04-2011, 06:25 PM
|
#9
|
|
Junior Member
Join Date: Jun 2010
Location: los dolses
orihuela costa
spain
Posts: 3
|
Re: no confidence in onc or radiologist
thanks everyone for all yr messages. Today I went to see a private doctor and she has ordered an ultrasound for me, I dont know what we will have to pay for all this but for my peace of mind it will be worth it. I will be posting to let you all know the results and hopefully will be able to sleep then. goodnight all
__________________
dx Feb 2010 withIdc 1.8 and 1.6cm plus 1 benign tumour 0.8mm. Her2+++ ER-PR- in right breast
DCIS, Her2+++ ER+5% in left breast, unclear margins
Lumpectomy April 2010
second surgery clean margins
Benign tumour in right breast not surgically removed because they couldn't find it at the time!
TCH x6 with Herceptin in June 2010
36 rads both breasts October 2010
January 2011 finished rads and started Femara
Brain MRI clear
Ultrasound on benign tumour no change
Finished Herceptin June 2011
Mammogram June 2011 results-new calcifications linear in ducts, birads 3 6month follow up. change to aromasin due to trigger thumbs
mammo Dec 2011 no change in calcs
MRI on spine, 3 herniated disks phew!!!!
Jan 2013 All tests clear!
Denise
|
|
|
|
|
07-05-2011, 02:47 PM
|
#10
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: no confidence in onc or radiologist
Sending good wishes and hope you get answers!!! 
__________________
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 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
|
|
|
|
|
07-06-2011, 12:33 PM
|
#11
|
|
Junior Member
Join Date: Jun 2010
Location: los dolses
orihuela costa
spain
Posts: 3
|
Re: no confidence in onc or radiologist
good news! went for an ultrasound in private hospital and all looks good. She couldnt find any tumour and said that the chemo had done its work on it so not to worry. She did say that I should have mri's though because of having dense breasts and to keep nagging my onc. She found a hemotoma on left breast and I am waiting to see if I have to have it drained. I dont really see the point because it has probably been there for a year now, I did have a couple straight after surgery and had to have them drained and it was quite nasty. I actually slept last night and feel so much happier now.
I am also very grateful to all of you ladies for messaging me, I have been reading all yr posts for over a year now but have never had the courage to write myself. That has all changed now and I will continue to read and post too. Maybe I can help someone sometime you never know.
We are also going to investigate the cost of having mri privately just in case Torrevieja hospital continue to refuse them to me. I cannot change hospitals here, even to change doctors is extremely difficult. Will stay with them but am more knowledgeable now and will keep argueing my case for mri's and ultrasound and not just mammos.
__________________
dx Feb 2010 withIdc 1.8 and 1.6cm plus 1 benign tumour 0.8mm. Her2+++ ER-PR- in right breast
DCIS, Her2+++ ER+5% in left breast, unclear margins
Lumpectomy April 2010
second surgery clean margins
Benign tumour in right breast not surgically removed because they couldn't find it at the time!
TCH x6 with Herceptin in June 2010
36 rads both breasts October 2010
January 2011 finished rads and started Femara
Brain MRI clear
Ultrasound on benign tumour no change
Finished Herceptin June 2011
Mammogram June 2011 results-new calcifications linear in ducts, birads 3 6month follow up. change to aromasin due to trigger thumbs
mammo Dec 2011 no change in calcs
MRI on spine, 3 herniated disks phew!!!!
Jan 2013 All tests clear!
Denise
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 06:38 PM.
|
Linear Mode
