Beyond Treatment

MJo · 09-22-2006, 10:37 AM

I had a 1/2 cent. tumor, Her2++ and no nodes. I had A/C, Taxol/Herc and rads. Finished 33 Rads on August 9. Am doing Herceptin until March 2007 and Arimidex every day for 5 years. I am very shaky. Afraid cancer is coming back or is already back. This is a stressful time at work and I'm afraid it's going to cause my cancer to come back. In other words, I'm a mess. I was more positive during treatment!

I've read that people get emotional after finishing treatment. Did others experience this and how did you handle it? Am I extreme? If I feel this way now, how will I feel when I stop Herceptin? MJO

CLTann · 09-22-2006, 11:13 AM

MJo,

your feeling is quite normal for patients just got off from treatment regimen. For what you got, you actually didn't need any chemo. Therefore, your prognosis is mighty good. With the treatment as an added insurance, you are basically home free. Don't worry about the BC too much. You might want to read the article I recently placed in this forum on people with minimum level of cancer, you may want to read the article so that you have additional peace of mind.

Ann

MJo · 09-22-2006, 11:29 AM

Dear Ann:

I had the Oncotype DX test. Score was 32, which is not low risk. So I took aggressive treatment. For some reason I think I have to bounce back quickly. MJO

Sherryg683 · 09-22-2006, 11:59 AM

Yes, I freaked out after treatment even though I was told that I was NED. Still freak out from time to time. My Oncologist told me it was normal to have an emotional "crash" after chemo. I'm waiting for the crashes to stop..sherryg683

Joy · 09-22-2006, 12:02 PM

Hi MJo, Being normal isn't always comfortable, is it? Maybe that is why I've spent most of my life being abnormal

we all go through the 'sitting duck' phase. After treatment is very scary. The main thing that has worked for me and I think many others is to do a lot of complementary type modalities e.g. massage, acupuncture, supplements, exercise, reiki, etc. It is very empowering to do things for you and your body. It is that sense of being proactive that many find so therapeutic.

And of course that dumb old truth we all hear is, "It just takes time".

Stay strong MJo (cause you are).

Joannie · 09-22-2006, 02:20 PM

MJo:
I found that my stress level after chemo was completed was horrible. I sank to an all time low. I had a lump in my throat, which I was sure was a tumor. I went to an internist who did the scope procedure, mostly for my piece of mind. She told me up front, it was probably from stress. You know, the old lump in the throat! That was me! Anyway, she put me on a low dose anti-depressant and it helped tremendously. I also sought out a phsycologist, who helped me to learn to live with my new life situation, how to deal with stress, not only bc, but dealing with family and learning now to carry the weight of the world on my shoulders. I do feel that stress may have been a factor of bc. I was experiencing a great amount of stress before I was diagnosed and sometimes I wonder if that compromised my immune system. I try very hard to keep stress at bay. I can tell you, the combo of anti-depressant and seeking out counseling to work through and deal with all that I had been through, was a life saver! The BC diagnosis came so fast and I had so many decisions to make so quickly, I wasn't even sure what hit me. Know that your feelings are quite normal. Just try to concentrate on taking care of yourself!
joannie

Ora · 09-22-2006, 03:06 PM

Mjo,
My heart goes out to you. I had the lumpectomy first, then chemo, then rads and now am on Femara & Herceptin. I was also stressed out by all of this and anxious after finishing rads. I'm working and out of sick leave & vacation and still bone tired. My boss doesn't want to hear anything about this anymore, and I'm thinking my hubby is getting tired of it too. I was hoping to take an early retirement and they promised me a severence package, but now don't want to give it to me. All of us have our personal problems and of course, the BC but I was so depressed after rads, I just sat around and cried. They put me on Wellbuterin to help me quit smoking and I didn't seem so depressed. Then because this forum recommended Effexor for hot flashes, they took me off the wellbuterin and I guess the Effexor is also an anti-depressent too. Both of them seemed to help and I don't seem quite so anxious or maybe it was just time. Anyway, the meds seemed to help me. I hope you find peace of mind soon.

Does anyone know how to find CLTann's article she recommended. I tried to search for it but couldn't find it. I would really like to read it.

sadie · 09-22-2006, 08:07 PM

I am soooo glad I came into this thread! I, too, have been so emotional lately.
With every little ache or pain (or none!), I feel like it's only a matter of time that I will be told "It's back". Most of the time I'm fine; then it seems like for several days at a time, that's all I think about.
I blamed it on my 1 yr anniv coming up on Oct 3rd; I blamed it on it being time for my annual physical with the same dr that told me about the bc; I blamed it on Arimidex making me emotional; I blamed it on finishing chemo; Now, to top it off, my dr (at my annual exam) told me I had blood in my urine. Went for catscan today. I am a nervous wreck wondering if I now have bladder cancer!
She put me on antibiotics in case it's a bladder infection. I don't know if it's psychological or not, but since my exam I am having slight pain/discomfort in my pelvic region (where the bladder is?).
To top it off.......I watched "The Linda McCartney Story" over the weekend. Big mistake! I spent that whole day crying!
Anyway, it's comforting to know that I am not the only one feeling like I'm "waiting" for bad news. I don't believe I am depressed, but having these feelings makes me wonder if I am headed that way.
I have 2 questions: 1) I've considered seeing a psychologist for counseling, but can they really help you if they haven't experienced the same thing we have?
2) Is this how it's going to be for the rest of my life? Each and every day/hour wondering "when?".
I am sorry that anyone of you has to be a part of this site, but I'm so glad that there are others that I can look to for support.
Thank you,
Sadie

atdec05 · 09-22-2006, 08:45 PM

Found this post by Carol:

Early breast cancer treatment methods
I just read a very complete article on early breast cancer treatment options. The article was designed for educational purpose for doctors and nurses.

This activity is located online at:
http://clinicaloptions.com/Oncology/Resources/CME%20Options/Breast%20Cancer.aspx

Ann

Bev · 09-22-2006, 09:01 PM

Hi. Started Zoloft not long ago. It has helped but it's really against my grain. Never had a need for any drugs before and makes me feel guilty. Asking for it made me feel like a drug addict. We are in a very stressful place in our lives so ask away for whatever will fix it at least now. I am somewhat skeptical about counselling.

I think as time goes by, without incident, you relax a little each day. I have after a year, but I'm still wound up. It's normal. Don't know why keyboard is underlining. Good Luck. BB

mcgle · 09-23-2006, 01:22 AM

Please could you post a link to the article to which you refer. We need as much good news as possible!

With thanks from Mcgle

Quilter1 · 09-23-2006, 07:27 AM

Mjo,
You are completely normal to feel the emotional drop after chemo. I too felt like I hit a brick wall once the chemo was finished. I think I even went into a mild depression. I felt like I was in a free-fall without a parachute. Thank goodness you have this site. I wish I had found it when I finished my chemo. I realized afterwards that I had such a sense of security (whether false or real) while on the chemo. No one warned me that there could be an emotional withdrawl. I was also facing another stress in my life. My brother was diagnosed with Stage IV colon cancer and went through chemo the exact same time that I did. I finished my chemo on August 31st 2006 and 5 weeks later watched my brother die from his cancer. Being at an emotional low, needless to say I was petrified that I would take the same path.

The good news is that we find ways to pull us through (faith always present). I had to shut down a business that I owned for several years since I could not maintain it through my treatment and starting over at that time was too much to handle. I was told to change how I eat, lose weight, lower stress etc. It was all overwhelming. I picked one thing that I could focus on to take more control of my health. I started a regular exercise routine. For several weeks I changed and made it my one priority. I still took care of my family, but they were very supportive of my new crazy schedule. The point of all of this is I felt like I had been drained of all my emotional and physical strength. I felt like I was at the base of a HUGE mountain looking straight up wondering how I would ever climb it. Find something that makes you happy and focus on it. Pick something you can control in your own good health and focus on it. You will see that over time the worries melt away. I doubt they ever go away completely, but they will not dominate your thoughts. This is what worked for me. I hope that you find something that works for you.

As for Herceptin, I did a yearly regimen of that. I actually looked forward to ending the treatments. By the 4 months I was feeling healthy and normal again. My hair had grown in enough to get rid of the hats, spring was in the air.....all wonderful things. So, I was glad not to have to be tied to the drip for 90 minutes. You have made it through the worst part emotionally.

Smile, you will wake up one morning and realize that you haven't thought about your cancer in days or maybe even weeks.

As Joy said it may sound dumb, but time will help heal our worries.

MJo · 09-23-2006, 08:44 AM

Thank you all so very, very much. I feel better knowing my behavior isn't extreme. I am going to accupuncture on Monday and I am starting to take walks again. That is the most I can do now to help myself. I felt weepy because summer is over. Never felt that way before. Must be part of my emotional state. I will either have a very grateful thanksgiving/christmas or will weep my way through it. Thank you again for the reassurance. It means a lot to me. MJO

MJo · 09-23-2006, 08:52 AM

Sadie:
My dad died of bladder cancer in 2002, so If I ever find blood in my urine, I'll go into a spin too. I hope you have a bladder infection. Chances are good that it is. Unfortunately, we still get the mundane illnesses. When I sprained my ankle, I was afraid it was due to arimidex weakening my bones. My cough (I have asthma) likely is not lung mets. I could get a flu or virus, and it won't be the cancer coming back. I could almost laugh about it if it wasn't so stressful. MJO

Joe · 09-23-2006, 09:40 AM

M JO
Recovery, the mental and physical exhaustion after the DX and TX PHASE. It is ALL LIKELY TO BE SO INTIMIDATING THAT WE FEEL ALONE AND TRAMATIZED BY the possibility of a recurrence.
Ihave found that what I call LIVING WELL, CAN MAKE YOU FEEL MORE POSITIVITY IN YOUR LIFE. Surrounding youself with all the simple things you enjoy in life for example, music, shopping, friendships can make you feel uplifted and more energetic.. Our brain play an important part in the healing process. Good music, social even you enjoy, eating nutritious foods(instead of Junk food) all begi to bring back your lost spirit , and you will continue on the path to survival. As corny as you may think, I beleive Living well always works as time goes on.. The end product of all this is what we all want- Surviving well.

My best well wishes, Hugs, Christine

Christine · 09-23-2006, 09:45 AM

M JO
Recovery, the mental and physical exhaustion after the DX and TX PHASE. It is ALL LIKELY TO BE SO INTIMIDATING THAT WE FEEL ALONE AND TRAMATIZED BY the possibility of a recurrence.
Ihave found that what I call LIVING WELL, CAN MAKE YOU FEEL MORE POSITIVITY IN YOUR LIFE. Surrounding youself with all the simple things you enjoy in life for example, music, shopping, friendships can make you feel uplifted and more energetic.. Our brain play an important part in the healing process. Good music, social even you enjoy, eating nutritious foods(instead of Junk food) all begi to bring back your lost spirit , and you will continue on the path to survival. As corny as you may think, I beleive Living well always works as time goes on.. The end product of all this is what we all want- Surviving well.

My best well wishes, Hugs, Christine

Hopeful · 09-23-2006, 11:29 AM

MJo & everyone else who has shared their experience in this thread: I subscribe to the Harvard Women's Health Watch, a newsletter from the Harvad Medical School. The Oct. '06 issue just arrived in the mail, and the cover story is "On Becoming A Breast Cancer Survivor." Here is an excerpt:

"Breast Cancer's effects on the psyche. The end of treatment is one of the most stressful events in the cancer experience. Often friends and family expect a woman to be fully engaged in life the day she finishes treatment. But while a breast cancer patient may rejoice that radiation and chemotherapy have ended, she typically feels anything but normal. Not only is her body irrevocably changed, but she's also likely to be on uncertain emotional terrain.

'What others usually don't realize is that the recovery from treatment may take as long as the treatment itself,' says Hester Hill Schnipper, Director of Oncology Social Work at Beth Israel Deaconess Medical Center in Boston. Schnipper and other health professionals who work with cancer survivors have observed that the emotional effects of cancer therapy are far less recognized than the physical effects, yet they are just as profound.

Typically, a woman marshals all her psychological defenses to get through treatment. When therapy is over, she can finally let her guard down but then may be flooded with intense and conflicting emotions. The occurrence and intensity of reactions vary from woman to woman, but most experience the following:

Fear and Anxiety. For women who have just completed chemotherapy or radiation - or five years of tamoxifen therapy - the end of active cancer treatment can be disconcerting. After months of regular medical care and attention, they often find themsevles abruptly severed from the oncology team that's sustained them during treatment. Equally common, and more distressing, is the specter of recurrence, which can color every aspect of life.

Grief. Breast cancer brings loss - be it as minor as the claim to perfect health or as monumental as the ability to have children. Grieving is a natural response to loss, and it may take months or years to complete.

Erosin of self-image. The physical effects of treatment - loss of a breast, hair loss, weight gain, radiation burns, and surgical scars - are reminders of one's vulnerability. Breast cancer survivors may feel that they're less attractive and that their vitality is diminished. The adjustments can be especially hard for young women who are thrown into menopause by chemotherapy.

Changes in intimate relationships. It goes without saying that a woman's sex life is affected by breast cancer. Illness is a notorious thief of libido. In addition, a survivor's partner may feel breast cancer's toll on body and body image as deeply as the survivor herself.

Effects on the family. Breast cancer is a family affair. Family members are likely to want to get the household back to normal after treatment ends, and they may not be patient with the partner or mother who needs more time to recover."

You are very much NOT alone in this. Hope this is helpful.

Hopeful

rinaina · 09-23-2006, 12:32 PM

I am so happy to hear I am not alone in feeling apprehensive. When my chemo ended on July 21, 2006, I too was a bit insecure and worried. I am now undergoing radiation treatments five days a week for 6 weeks and a booster dose the 7th week to the tumor site. I am also getting Herceptin drips every 3 weeks and I am hoping my body can tolerate these ts. In the past, I have always had low blood pressure, (110/70), but the last two hercepting tx when they took my pressure it was quite elevated, (156/90). I also have experienced since starting herceptin some swollen ankles a few times, the first time was after flying for 4 hours and while out of town the onc perscribed a diuretic which worked like a charm. My Muga is good....64%. Has anyone else every experienced elevated pressure and swollen ankles while on Herceptin? If I have to go off of herceptin I will be a basketcase because I was er/pr negative so I have no other means of fighting this horrible disease. My tumor was 1.4 cm and I had negative nodes and I was stage 1 but I know all too well how unpredictable this her2 cancer is. Yikes!

Hopeful · 09-23-2006, 12:59 PM

rinaina, I was told by my onc that fluid retention was a potential side effect of herceptin. Fluid retention and hypertension tend to go together; this is why dieuretics are prescribed for high blood pressure treatment.I was told if I developed severe fluid retention, the onc would prescribe a dieuretic for me. No mention was ever made about having to discontinue herceptin based on fluid retention; I think this is considered a manageable side effect. Check in the recent thread in this forum about Herceptin and weight gain for another perspective on this. Best of luck to you.

Hopeful

atdec05 · 09-23-2006, 01:43 PM

rinaina I also went from having low blood pressure pre-herceptin to elevated blood pressure. I had some readings similar to yours, then it dropped to borderline hypertension (14x/8x), so my PCP & onc. agreed to just monitor it. I don't know if it's coincidence, but I was allowed one deviation from my weekly treatments so I could go on a 3-week vacation. When I came back my BP was 117/78 (low for me on herceptin).

I notice swollen fingers more than ankles (can't get my rings on). I have 19 more treatments to go. My EFR has gone from 65 to 50-55. I'm having arthritic-like pains. Just hoping to last it out!

- Anna