HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 08-28-2014, 06:56 PM   #1
Lovemyboys3
Senior Member
 
Join Date: Aug 2013
Location: Texas
Posts: 61
Thoughts filling my head.

Hello Everyone,

As my last schedule Herceptin gets near, I feel myself getting nervous yet excited. I am sure many have felt this way but I am driving myself crazy with the what ifs. I do my best not to think this way but find it comes in waves. I started to think of things I can do to help reduce my risk of recurrence. Eating better, exercising, staying on top of my doctor appointments etc. I have even thought about having a hysterectomy.
I am not sure if my doctor would even agree and haven't talked to her about it yet but wanted to see if anyone else has considered this. I am still young but I have my beautiful children and even before this mess we had already decided we didn't want anymore children. The cancer just confirmed our decision. I am prone to very large ovarian cysts. In fact just a few months ago my doc found a 6cm cyst and uterine fibroid. I have always been told they are not abnormal for women my age. Some of these cyst get very painful but do resolve on there own. I recently went back for a check up and it was gone. My fear is that they will see something and determine its a fibroid and/or cyst when its not. I don't know if that is possible but its something that is on my mind. With these so very common for me, the pain they cause, the risk and the fact that I don't want anymore children really make me feel like this is something I want to do.

Just wondering if anyone has any advice. Do you think I should even bring this up to my doctor? What are the risks of having a surgery like this. She is aware of the fibroid and cysts and hasn't ever suggested it.

Any advice and thoughts are greatly appreciate.

Thank you!
__________________
Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
Lovemyboys3 is offline   Reply With Quote
Old 08-28-2014, 07:22 PM   #2
suzan w
Senior Member
 
suzan w's Avatar
 
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Re: Thoughts filling my head.

Have you considered BRCA testing? Could give you a little more info about distant risks, etc.
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
suzan w is offline   Reply With Quote
Old 08-28-2014, 07:44 PM   #3
Lovemyboys3
Senior Member
 
Join Date: Aug 2013
Location: Texas
Posts: 61
Re: Thoughts filling my head.

Hi Susan W,

I have had two different test one being the BRCA and they both were negative. My surgeon mentioned a new test that is being done but its new and not all insurances are covering it. Mine being one of them.
So I am not sure if that test would show anything different.
__________________
Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
Lovemyboys3 is offline   Reply With Quote
Old 08-29-2014, 02:49 AM   #4
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Thoughts filling my head.

Painful fibroids is the most common reason for hysterectomy, if your doctor agrees to order one. There is a family cancer cluster called Lynch Syndrome (in honor of Dr. L. Lynch who had first introduced the concept) that involves cancer of the brain, breast, reproductive organs (ovaries/uterus), small intestines, and Non-Hodgkins Lymphoma. If you have a family history of any of these cancers, you might be able to convince your doctor.

These cancers all are caused by the mismesh of the genes - there's a defect of certain part of the genes that cause the cells not able to self-repair during cell division.

Doctors have learned a lot in the past few decades - they are now careful about prescribing birth control pills and surgical procedures that will lead to early menopause (still different from chemopause).

I had the same urge to get rid of everything after my first diagnosis of breast cancer. But it took a recurrence as well as new family cancer cases plus a BRCA test result to convince my doctor (that I was not a hypochondriac and get the procedure approved by the insurance company.
__________________
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; 08-29-2014 at 02:52 AM..
Jackie07 is offline   Reply With Quote
Old 08-31-2014, 02:21 PM   #5
LeahM
Senior Member
 
LeahM's Avatar
 
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
Re: Thoughts filling my head.

Hi There,

I am having the same thoughts and wrote about it in a thread labeled "am I crazy to keep my ovaries"

I have decided to keep my ovaries and relieve myself of my uterus and cervix. My small family history of cancer includes my mat. grandmother who had both breast and uterine cancer.

Here is why I am keeping my ovaries...I am only 5% ER+ and so my chances of another BC or ovarian cancer are no higher than the average womens. Plus, removing your ovaries at such a young age increases your risk of heart disease (the #1 killer of women) by 40%. That is HUGE!! Plus, ER is good for your bones.

So when I remove the uterus the doc will peek at my ovaries and if they are ok then they will stay.

If I read your signature correctly you are ER-

Last year when I brought this up to my docs they all said "no" because I was "too emotional". Now they say "yes" seeing that I have calmed down a bit and took the time to weigh the risks vs. benefits. Now it's up to the insurance co to make the final decision.

HOWEVER....I see you are prone to cysts/fibroids...so here is another thought floating around in my head...

....and it floats around there because my BC was hiding behind a KNOWN benign tumor in my breast....

...don't give cancer a place to hide.

Ultimately you will do what is best for you. These decisions are hard to make...

Best
Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
LeahM is offline   Reply With Quote
Old 09-01-2014, 01:05 AM   #6
Lien
Senior Member
 
Lien's Avatar
 
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
Re: Thoughts filling my head.

It may or may not be a good idea to have a hysterectomy. Most of us experienced the anxiety at the end of treatment (surgery, rads, hormonals, perception). Up until that moment, we (subconsciously) think we are actively doing something to fight our cancer. But when we stop, it feels as if we are inviting the cancer to come back. Like we are opening the gates, so to speak. That is scary. However, most of the time, we have done enough. If there is no evidence of other risk factors, like a strong family history of cancer, you should be ok. If you did have a hysterectomy, would you worry about any other cancers? I did at first. Now that I'm 10 years out from diagnosis, I've started to relax. Actually, that sense of "I'll be ok" started a lot earlier. It gets better every year. So unless there's a compelling medical reason to get a hysterectomy, I would suggest you postpone your decision a bit. A hysterectomy is major surgery and your body has taken a beating over the past year. Heal a bit, take a breather and see how you feel in a year. In the mean time, keep having those ovaries checked, of course. And if they do give you a lot of pain and distress, talk to your doc about ways to treat them. But having a hysterectomy does not, as far as I know, reduce your risk of BC.

I've had huge fibroids for decades and as far as I know, I'm still fine. Which reminds me that it's time for a check-up...

Love
Jacqueline

PS> Congratulations on finishing your Vitamin H!
__________________
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.
Lien is offline   Reply With Quote
Old 09-01-2014, 01:12 PM   #7
thinkpositive
Senior Member
 
Join Date: May 2014
Location: San Diego
Posts: 411
Re: Thoughts filling my head.

I would recommend discussing this with your doctor to get a better understanding of the pro's and con's of having surgery. Even though you aren't going to have more children, you are still young and your ovaries are still serving a useful purpose.

I just finished my Herceptin treatments a couple of weeks ago so I understand how you are feeling about doing something proactive to prevent a recurrence. I've decided to focus on living an anti cancer lifestyle as indicated in the Anti cancer a new way of life" book written by David Servan-Schreiber, M.D., PhD. Having surgery is a big decision so please do your research before making a decision.

Good luck to you! Its so great to be done with treatment. Celebrate!
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
thinkpositive is offline   Reply With Quote
Old 09-04-2014, 09:10 PM   #8
Lovemyboys3
Senior Member
 
Join Date: Aug 2013
Location: Texas
Posts: 61
Re: Thoughts filling my head.

Thank you all for your comments.

I think I let my anxiety get the better of me at times. It comes and goes and when it comes it is overwhelming.

Lien, your comment really hit home. If I were to have a hysterectomy would I worry about another cancer elsewhere. The answer is probably yes. It is truly amazing to me how fears and anxiety can change your body. If I start thinking about the "what if's" on a certain part of my body it seems like those "symptoms" get stronger. Just like when I had shortness of breath, the more I thought about the "what if's" the worse it got. I ended up having numerous tests because it was so very bad. Then during a scan I had my vein burst under the pressure (yuck) and as I sat there with an icepack and mind focused on my arm I suddenly noticed I was breathing fine. That's when it hit me, I was causing the shortness of breath because of anxiety. It's almost like I just turned it off because after that I was breathing just fine. I really never even though of it being an anxiety attack because i always thought that sort of thing doesn't last weeks. But it really does.

I am still going to talk to my doc about the hysterectomy but am more comfortable waiting at least until my body has recovered from this mess. At least that is if my doc doesn't want me to have it sooner which I am thinking she won't. I am blessed to have such a wonderful Onc who is taking very good care of me and I know is going to watch me very closely.

Ladies... Thank you so very much for being a great support system. I have a wonderful family but tend to make sure I keep a happy, strong face for them. That makes it hard when I have these overwhelming feelings. I don't want to stress them out so I tend to keep it in. But then I come here and let it loose and it helps more than I can say.

I continue to pray for strength and courage for myself and the wonderful men and women on this site.

I put my trust in the Lord!
__________________
Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
Lovemyboys3 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 11:16 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter