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Old 04-23-2009, 02:12 PM   #1
Savta
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Unhappy Terrified now that I'm 'healthy'

That's it. I finished my year of herceptin. I had a mammogram. All is well. I am told I am cancer free.
So why am I so anxious? I find myself on the verge of tears all week.
I will be meeting with my oncologist next month-my quarterly visit--but, they keep telling me, that's it. I am now 'healthy' and to go back to my life. How do you get that through your mind? It's easier to come back for treatments, than to abandom them!
When do I start believing that I am really o.k.?
My family doesn't get me. I was cool these past 15 months through the treatments, surgery, radiation. Now that I made it through everything--with no complications--panic has set in. Anyone else been through this?
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Old 04-23-2009, 05:10 PM   #2
WomanofSteel
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I think even though the treatment is tough and scary we somehow find comfort in knowing we are doing battle. We go through a routine everyday, week and month. Now it is time to take a deep breath and find a new routine. One that includes being happy and healthy and spending time with that family of yours. It will be ok. You just need a new security blanket.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 04-23-2009, 06:00 PM   #3
'lizbeth
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Savta,

I feel your panic. In June I will finish my year of Herceptin. I would feel much better if I got in a clinical trial for a Her2 vaccine. I don't ever want to have breast cancer again. Yikes!
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 04-24-2009, 07:45 AM   #4
Colleens_Husband
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As Colleen's caregiver, I feel that as long as treatments are ongoing, then we are fighting cancer. For better or worse we are at least doing something. Cancer is a sneaky bastard. So all of a sudden are we supposed to declare victory and hope that cancer is truly and finally dead and not just playing possum? Frankly, I don't trust cancer. The tumor grew because it tricked the immune system in the first place.

So Savta, I know exactly what you are feeling. But your well trained doctors are still going to be looking diligently for the cancer's return. You will be having regular doctor visits for years to come and that is the first thing your doctor will be looking for. Cancer is sneaky but your doctors are on to its tricks.

You should continue to be vigilant but take comfort that your medical team used everything in their toolbox to get rid of it.

I don't know if this is any comfort to you, but I think it is much better to have a healthy suspicion of a life threatening enemy.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 04-24-2009, 07:49 AM   #5
juanita
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you aren't completely on your own yet. your drs will be watching you for awhile yet. i know how you feel though. in september i will be 5 years out and i still wonder if i did everything i could.
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st 1, gr 3, er,pr-, her2 +,
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Old 04-24-2009, 10:01 AM   #6
Vi Schorpp
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See Hopeful's link from April 4th

Post-Treatment Transition Can Be Scary for Cancer Survivors

I'm sure there are other good links you can search for, but this was one I remembered reading...
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3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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Old 04-30-2009, 12:34 AM   #7
Savta
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Thanks for all the support. I know--in my head, all of you are right. But it's convincing my heart that is the problem. Crazy after being so optimistic throughout the whole 15 months of treatments and surgery. I am curious to hear what the oncologist will tell me as to what she'll be doing for follow up. But I have decided, once there is a plan (and no plan may also be a plan...) I want to go on a whopping huge, fun vacation with my husband! Somewhere far from cancerland!
Vi Schorpp, thanks for the link.
Let's keep holding hands and pass along the strength!
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Old 04-30-2009, 09:01 AM   #8
chrisy
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Satva,
I think you are experiencing normal "post traumatic stress". I had this happen to me - I didn't recognize it until after the second time in 2 days I started crying uncontrollably for no reason.

We are so focused on treatment - doing something - that we somehow back burner all the emotions. At some point they do come to the surface...

I think a whopping huge fun vacation sounds like a great plan!
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 04-30-2009, 08:54 PM   #9
CindyE
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I completely understand where you are. I just finished my year of Herceptin on April 27, 2009. I had an ultrasound and mam done in Feb. to make sure about scar tissue and it was all clear. I feel a bit nervous about being "done" with treatment. But I'm trusting my doctors and God to help me move on and trust that I'm going to be okay now. Life is short and I plan to enjoy each and every day that I am granted.
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Cindy

L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008

Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!



I am calling this my pink journey
Follow my journey into the pink at my blog here

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Old 05-01-2009, 09:13 AM   #10
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Savta, I can totally understand your feelings. I remember when Ed's doctor told us at one point he was stable (as he was going to be)and to give him some normalcy he was going to spread out his appointments from every 4 weeks to every 8. I bursted out in tears right then and there. OncoMan looked at me and asked why I was so upset. I explained that I was so insecure about being on our own and why wouldn't I, we were always working towards making that happen. Well, this was happening and I wondered why I felt sad. He explained that we would never be alone but needed to accomplish this because Ed was getting better. He was always going to be his patient and we would continue to monitor him. I was not taken with this, the doctor moved the appointments to every 6 weeks to give him that normalcy and to help me with my problems (my problems~hehehe).

I think that having cancer changes us so and while we are fighting and seeking treatment, we somehow feel protected. By these appointments gradually being spread out I knew that they would keep getting to be a bigger gap. I feel that when he got diagnosed at stage IV, I had no time for denial. I immediately started research, organizing the best medical team I could, and putting our affairs in order. We were and still are working towards the same goals. He was right though, Savta, Ed was never alone and as soon as he started to get sick again our team was there. To this day I feel that when we are working towards 'no evidence of disease' and taking treatments that we are safe. I also feel that those same feelings of the 'viewing' there is no safety net (in my mind) will surface. Since cancer is a balancing act, this is just another act. We will have to balance the freedom of normalcy with the feelings of being unprotected (in my mind). If we do not, then how can we enjoy what we are fighting for? How can we reap the benefits of receiving the gift we are fighting to unwrap?

Allowing us the normalcy to enjoy life more was hard. After all the fighting and working towards this goal, when we got there, we had to learn how to enjoy it. I tried with all my heart to enjoy it but had to push aside those feelings of helplessness. To me, this is a small price to pay if I can balance all of these feelings together. My words to you come as a rambling post as they rise to the surface to explain myself. I am still going to have these feelings but I will be ready and more than willing to try this balancing act again. The entire journey has been one balancing act to another so I will welcome one more.

So Savta, I guess a summary would be that I can understand your feelings. As time goes by, you too shall have your own act to balance. In order to fully enjoy the benefits of what you have worked so hard for, you will have to. Savta, go unwrap that gift you have aimed to unveil all this time. Unwrap it and wear it proudly each day. You will always have protection for they will be waiting in the background like a good waiter. You will think they are not there but they will know when you will need something.....and they will jump into action.

Savta, this is the moment you have been waiting for. Unwrap and enjoy, I am so thrilled for you. And Sweetie, you will never walk alone on this journey. All safety nets are there and will always be. Bravo Dahling (hear my accent?)>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 05-03-2009, 12:14 PM   #11
norwegian
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Savta,-

I really understand how you feel!! In a way- when all treatment is over,- another struggle is starting...: how to get back to the normal life, how to enjoy things, long for things - it is all gone,- and it is really scary.
When having the chemo, you have a date to look forward to,- the day you finish the treatment - that day you long for.
But now - you are one your own with a fear of the future - not at all the joy you were looking forward to.
I was really depressed after treatment was finished. Had no joy, only fear.
But - it is much better now, so the feeling will pass I think!
As for the cancer treatment - it should NOT stop with the medical treatment. Most of us need some psycological help as well. That is my opinion, anyway.
Good luck with all your thoughts...
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Diagnosed Dec 06, tumor 1.3cm. 1/10 node. PR/ER-, Her2+, DCIS, Mascetomy right side. FEC100 x4, Taxol x4, 25 Radiations, Herceptin finished in June 08. Lymphedema right arm
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