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The monster is back

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

I found out yesterday at my one year check up that the cancer is back. The PET scan showed a spot on my lung and a para aortic lymph node lite up. The feeling of despair is overwhelming. My daughter turned 14 today and I can't bear the thought of leaving her. I have a meeting with a Thoracic surgeon on the 27th and my onc on the 29th. I am getting a second opinion at Sloan, trying to get all the paperwork over. My Dr told me this is bad. I was dx Jan 2011 with endometriod cancer, stage 3C1, had full surgery and 8 rounds of chemo. My poor husband is devasted, and we can bear to tell my daughter this horrible nightmare is back.

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

I know how devastated you and your husband must be. I too was diagnosed with 3 c UPSC in Jan 09. I have had two recurrences and needed to have chemo both times. It is scary when the cancer comes back. I hope you get encouraging news from your thoracic surgeon and onc. Remember we are here for you. In peace and caring.

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Thank you thank you thank you... I feel like I am trying to grab a life line and it keeps slipping threw my fingers. Thank you for your response, I feel so alone and scared.

paris11
Posts: 132
Joined: Oct 2010

Hi Laura,

Don't panic. You are thinking way, way too far in the future. More and more cancer is becoming a chronic illness. More new approaches to cancer are constantly evolving. That said, if I had a young family I would be distraught. Your feelings are certainly legit.

Ro and I have been "hanging" around this board for years. Ro gardens. I swim. We are living life.

In January 2007 I was DX. My great worry was, "How will I ever explain to my Beautiful Emily (granddaughter) that I am leaving her?"

Never had to explain - Em now helps me.

I have had two recurrences - liver and para-aortic lymph node. I had carbo-taxol in 2008 and IP in 2010.

Try, just for the week end, to refuse to let cancer interfere with YOUR LIFE AND THOSE WHOM YOU LOVE. TELL CANCER TO GO TO HELL!

Come Monday - get back on it.

Love you.

Connie

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Your kind words mean so much. When I think of my sweet Sarah and the thought of her not having a mom it brings me to my knees. Thank you for reaching out, I really need to hear from the women who are "walking the walk". Much much much love to you.

nempark
Posts: 589
Joined: Apr 2010

I remembered when I was going for my one year check up I was so devastated my grandson said to me "grandma if its back you will take care of it just like you did one year ago".
That was so comforting to me. Laura, you are on the right track, you are going for a second opinion. The initial shock is always devastating. The Doctors always make it seem worse than it really is. Go for your second opinion and then they will set up a treatment plan for you. It is so normal to start thinking negative and thinking far ahead, but we do this all the time. Hang in there until you get there. Thank God you have a husband, and from what I gather, he is quite caring. That is a plus for you and your daughter. We will all be here praying and thinking about you.

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

I can not express enough how much this means to me... you reaching out and comforting me. I am trying so hard to pull myself up. My loving husband is a blessing.. and you are so right this is a plus for my dear Sarah. Thank you for the prays, I really need them now. God bless you.

sunflash's picture
sunflash
Posts: 150
Joined: Aug 2011

Dear Laura,
I'm so sorry to hear you must face this monster again, and certainly understand the stress this brings. I'll be having my one year checkup in November for UPSC, which is actually the second time I've faced cancer. I was diagnosed with vaginal cancer in 2007, and four years later had to face uterine cancer. But I got through it and so will you...step by step one day at a time. I'm glad you're having a second opinion and know you'll feel better once a treatment plan is in place....and you'll get back into fighting mode! You can do this! I'm keeping you and your family in my prayers....please keep us posted. You're not alone....you have the support of all your sisters here.

pakb56
Posts: 141
Joined: Jan 2012

Laura so sorry that is the worse thing. You rhink you are going in the right direction and that get pounded with more bad news. I czn imzgine hearing that from your grandson. MIne is 6 and it breaks my heart to think I may not be around to see him grow up.
As others have said one day at a time and try to do as many of your normal activities. That is the advice I rec'd from my 87 year old mother in law, she was first diagnosed swith breast cancer 53 years ago then had her second removed about 25 years ago. She tells me do what I can and do't sit around and feel sorry for myself...stary busy and you will feel better. I try to live by that.
Take care,
Hugs,
Pag

janh_in_ontario
Posts: 109
Joined: Sep 2010

Laura
I am so sorry... it sucks and most certainly is not fair. I know the pain and fear you are experiencing - and I have no advice other than to tell you to seize the day and enjoy life to its fullest. Try to focus on the good and the positive and the pleasant things in your life and give the C word the minute slice of your thoughts that it deserves.
And if you figure out how to do that... write a book and we will all buy it!
Huge hugs and prayers coming your way...

Jan

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

A million and one thank you's.... I really need you ladies, the posts give me the strength I need when my spirt is just so sad.

RoseyR
Posts: 464
Joined: Feb 2011

LAURA,

Am so sorry to hear of a quick recurrence; I have a one year post-treatment scan due fairly soon and may be facing the same news.

Of course you're feeling devastated and scared, but take heart! Look back through our messages at all the women who have had recurrences in the lung a year to two ago and are still hanging in there!

I hope you are seeing a good integrative doctor who can get you through chemo with few side effects and perhaps even enhance the treatment effects, as well as your regular oncs; if you don't have one, Google "integrative doctors" in your region and look for an M.D. if you are conservative--although SOME naturopaths are also quite knowledgeable if they have long dealt with cancer patients and done their research.

Love,
Rosey

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm right there with you, sister. I was diagnosed Sept 08 and now dealing with second recurrence of UPSC. Like Ro and Connie, I've been on this board for years. It is truly scary and discouraging.

I try to step one foot in front of the other now. I'm taking an alternative route (diet, supplements and meditation) for the next 3 weeks till I have next PET scan and then need to regroup and see what is the next step.

Laura, take heart and like others have said, try not to let cancer define you or take over all your life and thinking (hard to do sometimes, I know). God will lead you to the best path. You will have many years with your daughter and wonderful husband.

Hugs, Mary Ann

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Thank you for giving me hope, it seems like such a huge huge black hole right now. The thought of spending many years with my daughter and husband brings tears to my eyes. She starts High School in 2 weeks and I just feel like a girl needs her Mom during these years. I need to get my feet back underneath me and start the battle again. Thank you and all you ladies for helping me. Your kind words fill my heart <3

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Thank you Rosey, from the bottom of my heart. I am currently seeing my gyn/onc and onc/hematologist. They want me to see a thoracic surgeron asap. I have an appointment with a dr they recommended and I am trying to get into Memorial Sloan and see what they think. My hematologist told me that both lesions had an SUV of 4 and are about 1cm which he said if the SUV was 3 they would wait acouple of months and redo the scan. Is that good, who knows... I was shaking so much I had a hard time asking questions. I will look into integrative doctors in my area. I live on Long Island in NY so I'm sure there is one by me.

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Thank you Rosey, from the bottom of my heart. I am currently seeing my gyn/onc and onc/hematologist. They want me to see a thoracic surgeron asap. I have an appointment with a dr they recommended and I am trying to get into Memorial Sloan and see what they think. My hematologist told me that both lesions had an SUV of 4 and are about 1cm which he said if the SUV was 3 they would wait acouple of months and redo the scan. Is that good, who knows... I was shaking so much I had a hard time asking questions. I will look into integrative doctors in my area. I live on Long Island in NY so I'm sure there is one by me. I feel so luck to have you women to lean on, I really am such a mess. Thank you

HellieC
Posts: 431
Joined: Nov 2010

I can't really add to what these ladies have already said. I have been fighting this beast since 2001 and I am on my third recurrence. I am still here, still active and living a "normal" life (whatever "normal" is once you've been told you have cancer!).
To hear that the beast is back is truly crushing news. But your mind will put all this into some sort of order in the coming days and then you will feel able to get back up and fight. There are many possible treatments still left in the armoury for you - further chemo, surgery, hormones, radiotherapy. Try not to think too far into the future - take baby steps towards the time when you will be NED (no evidence of disease) again.
We're all here for you, sending positive vibes and prayers for your health.
Kindest wishes
Helen

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Thank you Helen, getting my mind to stop thinking about the future seems to be the hardest right now. I wish there was a switch I could flip to stop it. I am slowly getting myself together, taking a deep breath and trying to keep busy. My husband plays bass guitar in a band and will be performing at a street fair tonight. I'm forcing myself to go and take my daughter and her friends. I told him he needs to do this, that the time is going to go by no matter what so we have to try to make the best of what we have. Thank you for sending your prayers and positive vibes, it means so much.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

2010 Dx Endometrial, Adenocarcinoma Stage IVB grade III. Surgery, Carbo Taxol, Doxil.Megace as maintainance..
Buggers Returned 8 months later with 8 cm tumor. Again surgery in October 2011, colon resection, where tumor was lying on colon as a cat on a pole, same gyno onc surgeon took off 15 cm of colon and sewed it together. Went onto Genzar Carbo. Body, low white and red blood cells couldn't tolerate. Also two months later Pet Ct found tumor in lymph nodes in pelvic area. Had IMRT radiation 27 times. Went on trip to Hong Kong and Australia. Returned home April, new PET CT showed peri ventricular, aortic area near stomach and stomach wall, lymph nodes tumors. More radiation to those three places. July 4 took off for Long Island, took thrice a week yoga, twice a week learned Spanish, oodles of company's swimming daily, rest twice a day.
Hemoglob down to 8.3, may have transfusion this week.
Pet Ct scheduled for two weeks hence. And we'll see where the buggers are.

All this to tell you keep on trucking, smiling, learning, exercising, and resting, getting back up and start all over again.

We're all with you and with each other!
God Bless,

Chaya Sara

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

God Bless Sara, thank you for responding. I live on Long Island and we boat all along the South Shore. Before my scan we took a trip and spent a week at the beach. I'm so glad we did that, the weather kept calling for rain but the rain always stayed north of us. I like to think of it now as a special gift. I'm going to try and get back to the gym today, I'm still having problems sleeping and hope that getting back to my routine will help. Good luck on your scan please keep me posted, you and all the ladies are in my prayers and feel so blessed that we have each other to talk to.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Speak to your doc about sleeping pills.
You'll worry about addiction years from now, but now you and your family need you to have sleep to fight another day.
Chaya Sara

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

I've tried acouple of things, but will call the Dr and have him suggest something alittle stronger. Thank you for checking in on me <3

chrismc's picture
chrismc
Posts: 42
Joined: Aug 2012

Ativan 1mg is working well for me. It calms me down all day and I am able to sleep at night. Hope you find something that works for you.

Chris

soromer
Posts: 130
Joined: Mar 2011

so I have some idea of how you are feeling.

It also sounds as though we have some other similiarities. I was also dx in Jan 2011 with endo adenocarcinoma, grade 2 stage 3C2 (because during surgery it was discovered that the cancer had spread to para-aortic nodes).

I had 6 rounds of chemo, doxorubicin and cisplatin, and was about to undergo radiation when the CT scan I had done showed mets to the lungs. That was a year ago exactly this week.

My gyn/onc gave me the news over the phone. I was at home by then with my husband and daughters (the older one was then 26). We all sobbed.

And then I got to work.

I spoke with one of my very oldest friends, a DO who is now teaching at a med school, who told me, "Time to see the witch doctors." I knew what she meant--time, that is, to start considering non-allopathic treatments.

My gyn/onc, by the way, is based at one of the 40-something Comprehensive Cancer Centers in the U.S., so she's no slouch. But they are conservative here in the Midwest. I did seek a second opinion from a gyn/onc at another CCC nearby. He had very little to offer me other than second-line chemo. The clinical trials they were running weren't ones I qualified for; my lesions were too small, thankfully.

So I stayed with my first gyn/onc and started the hormonal therapy she recommended. I've been on 160 mg of Megace daily since last September (plus 2 baby aspirins daily). She explained that since my tumor cells were strongly estrogen and progesterone positive, the Megace had a good chance of working for a good long while--a decade or more for some of her patients.

But that's not all. I found some women who do Reiki healing, and two circles were very helpful to me. They greatly reduced my fear. I started doing qi gong, which I think has helped my energy balance. I started acupuncture, originally for pedal neuropathy but then later for immune system support. I eventually saw an integrative medicine MD, who also practices anthroposophical medicine. I haven't tried mistletoe yet but might at some point. I have been seeing a DO who does manipulation, and I think that has helped. I've been doing yoga regularly, and I meditate and visualize my body eliminating the cancer. As if it were a big tangle of knotted hair that had to be smoothed out.

My biggest source of support, other than the gyn/onc and the Megace, has been Ayurveda. My Ayurvedist does energy work, but she also prescribes breathing exercises, food, supplements and teas, along with offering a lot of emotional and spiritual support. Since you're in a large metropolitan area you might be able to find a practitioner there too, if that option is at all interesting to you.

I have had great results ever since that terrible scan last September which showed 5 spots in my lungs (the largest 8 mm) and several suspicious lymph nodes. My December scan showed two spots had disappeared and the others were smaller by half; my March scan showed more improvement yet; my June scan showed NO evidence of disease. They are ALL gone.

I'm still maintaining my treatment regimes, though summer has been a little lax for me. But I'm getting back into my regular routines with the approach of Labor Day and the return to school. I love my treatment team and think that they are doing very well by me. I believe it's the synergy of all the methods I'm pursuing that has helped me heal.

I'll be honest. The things I do are expensive, time-consuming, and often inconvenient. But so far, so good, and I can't argue with success.

I will also tell you that my younger daughter in particular has had a very, very hard time. However, she had some background issues that have nothing to do directly with my cancer dx, so it's not surprising that she has struggled this year. All you can do is hold on and work for the best. She is better, more stable and more cheerful since my health has improved.

I am very sorry that you are in this situation. I wish that none of us had to deal with this beast. But all the same--you can get well. Even after a setback like this.

Good luck, Laura. We all will be here for you; we're good that way.

Peace and blessings to you and your family.
soromer/Kate

laura25's picture
laura25
Posts: 158
Joined: Mar 2011

Oh Kate your kind words and support mean the world to me. Thank you for telling me your story and letting me know I am not alone. I'm feeling more like myself again and helping Sarah prepare for school next week. We bought school supplies and are going to the mall tomorrow for some clothes. Its so nice to enjoy these moments with her. Its good to hear that your daughter is well, as mothers thats all we care about.. if something happens to us, what about our kids.
I will look into finding a D.O. next week. There is actually a meditation center near me and thought it might help me deal with the stress. Its horrible anyone has to deal with this, but its also good to hear that people are living their lives for years while fighting cancer.
Sending you much Love,
Laura

soromer
Posts: 130
Joined: Mar 2011

I'm glad you stopped by the thread again and saw my message.

The single biggest piece of information I--and the other women here--can pass on to you is that you CAN keep going with this. Yes, there are some women who have died relatively quickly after diagnosis (usually because they have a worse pathology than we do), but there are also many who have been able to move from one treatment to another, even with a really bad prognosis from their doctors.

I hesitate to say anything that even whispers a "blame the victim" sort of attitude, because there is also a great deal of chance/luck involved. (Leaving aside the issue of the resources you can access & afford--because it has made a huge difference to me to be in a location that has many to offer. My non-medical practitioners have also been willing to offer me reduced rates for their services, which has also been very important as our family's finances have been strained to the limit by my illness.) But I think the testimonies here also show that being proactive on your own behalf increases your odds of long-term survival. Ask questions of your doctors; investigate complementary treatments to see what makes sense for you; take charge of your recovery. That's a common thread you'll see here.

Meditation is great, I highly recommend it. And if there's a Wellness Community/Gilda's Club/Cancer Support Community near you, I recommend that too. The one near me (a CSC) has many FREE supportive programs, ranging from meditation to yoga to support groups to cooking classes.

I do recommend the real-life support group too. I've been going weekly (more or less) for over a year. We really do help each other stay strong and forward-looking. There is one woman in my group who has very advanced Stage IV breast cancer, and she was so ill that her medical providers started to suggest hospice to her. That was mainly because she simply couldn't keep food down. But she kept coming to the group and hearing encouragement, and she kept asking her doctors if there wasn't something else they could try--and finally, she got a medication from a NP that has done the trick and has allowed her to start eating again. She looks better already, even only a week into it.

Her story is an extreme one, because neither you nor I are that sick. But my point is that if someone on the brink of a final decline can rally and gain more time, then we who are in better condition can do so as well.

My daughter and I were out school shopping ourselves yesterday. It is fun just going out to do normal things. I'm not quite taking them for granted again, but I am also able to enjoy them a little more without thinking gloom and doom while I'm doing them.

Keep your spirits up, my dear sister, as much as you can. Cry when you need to also. It's all part of the process. Mostly, keep reminding yourself that you ARE resourceful and that your body CAN heal with the right support for you.

Hugs and love back to you,
Kate

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thank you for sharing your story again here. I think you are awesome - positive attitude, a can-do spirit, and determination. I agree that you have found a wonderful synergy. I'm still working on finding that - but life is a process, isn't it. I'm such a work in progress.

You've given me more hope and determination. Thank you.

Mary Ann

soromer
Posts: 130
Joined: Mar 2011

I appreciate your kind words.

I've received a great deal myself from the women on this board--including you!--who keep doing the very best we know how to deal with something we never wanted and wish we could make disappear with the snap of our fingers. If what I say is helpful too, then it's in part because I'm just carrying on the tradition that's been established here and was in place before I arrived.

I know you have a tough row to hoe, my dear, and I know you are "a work in progress" like the rest of us~! I so dearly wish that you can find the healing combo that works for you.

Hugs and prayers to you.

Kate

seaturtle
Posts: 41
Joined: Aug 2012

I just joined and was very recently diagnosed, but I wanted to add my support to you. It has to be so difficult with a young one to think about. But I think your strong love for her will add to the strength of your recovery.

I shall be thinking of you and everyone here.

Naturo
Posts: 4
Joined: Sep 2012

Hello Laura,
My heart goes out to you all. I went through this with my wife who has passed away.
Standard treatment does not seem to work.
The good news at the moment is that your lungs only have a spot - so action is required.

My non-medical opinion is to try whole body hyperthermia treatment combined with low dose chemo. There maybe a clinic in your state.

Coley's Toxins may also be tried.

Kindest Regards to you all ......

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