What would you say to your newly diagn... - Lung Cancer Support

Lung Cancer Support
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What would you say to your newly diagnosed self about your cancer if you could go back in time?

Denzie
DenzieModerator

We’ve all learned so much even if we don’t try to stay informed of new developments. We’re the authority because we’ve lived it.

That’s where I’d start actually. Reminding myself that I live lived inside of this body and the doctor needs to know things about my response to treatment that only I can share. Also that it’s not an automatic death sentence.

30 Replies
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Absolutely correct ! Only you yourself know intimately your body and should share timely and logically to all the related medical specialists,who normally only be interested in their respective areas.

I'd say don't panic! Then I'd tell myself that in two years, I'd be answering Denzie's post :)

Denzie
DenzieModerator
in reply to PegD

Thanks for the smile that put on my face!

Wow!!!! You got me thinking. It's going to take a while to get my thoughts in order. Will have to get back to you on this.

Denzie, this is an excellent question!

For the first (liver) I would tell myself just what I did - that there are lots of treatments out there, and I just have to stay calm and let the doc do his thing. Statistics are just numbers, and I can beat this.

For the 5th one (lung) I didn't take it as easily. Now I would go back and tell myself what I did the fist time. I'm two years in, and the changes in my life this time are more drastic since I know the loss is permanently being short of breath. I've gone from being very active to not being able to keep up with my friends and my world is smaller.

Denzie
DenzieModerator
in reply to anrean

5 different primary cancers is a record of some type. What kind of changes have you made with the latest cancer?

anrean
anrean
in reply to Denzie

Considering my history, 5 primaries isn't that unusual - there are quite a few of us with that many and more.

As for what I did differently, I stopped thinking I'm going to change my life any more than I already have. There isn't anything I can do that is going to change the outcome of all of this. I fell into a deep depression and worked my way out of it. Lung cancer is beatable, and I will beat this, too!

kri312
kri312
in reply to anrean

Can I ask what others you had and the staging of each...how long ago was the first one diagnosed.....I have 3 - DCIS breast, which found dormant thryroid and stage 1 lung! All so early, all primary!!! All have been removed and hopefully gone for good!

anrean
anrean
in reply to kri312

I have been very blessed - all of the cancers have been caught early, and usually while looking for something else. I started this journey in 2002 with liver ca - they caught it because my gall bladder was so full of stones that the pain finally became constant and unbearable; was transferred from regular hospital to a comprehensive cancer institute. 2004 was DCIS in situ in right breast. 2006 was ovarian (caught because mensturation suddenly becaue painful) , 2009 brought aggressive ductal carcinoma and DCIS (the DCIS was hiding behind the aggressive ductal) in left breast and 2016 lung. Fortunately, once you get on their radar, they don't let go. My primary doc is very proactive in having things checked out immediately, so everything was caught by stage II.

I hope all goes well with you! Remember to be proactive and have things checked immediately instead of waiting!! I know it is frustrating to constantly be going for checkups, and sometimes I go on "doctor strike" because it gets overwhelming - but never for more than 2 months. I am strong, and do what the docs tell me, which is probably why things have been so successful this far.

kri312
kri312
in reply to anrean

Wow- you have been through a lot and seems like your team has been on top of everything! Can I ask how old you were at 1st diagnosis and if any of your treatments required anything more than surgery to remove - I just turned 50 so been quite the year! You make me very optimistic that I can manage all of these!!!

anrean
anrean
in reply to kri312

Hi

All of this is manageable if you find a way to not become overwhelmed. For me it is to go on Doc strike and not see any doc except pain management for a month or two, Also, I don't dwell on what has already happened and focus only on what is going on now. Can't change the past, can only work on what is happening now. Lung ca is the first time my life has changed drastically on a permanent basis. I have learned to control the panic attacks when I can't breathe and to talk myself out of them. No small feat for someone who was very active and is now chained to O2 24/7. Rads for each, and chemo for 2. It is frustrating to haul around an O2 tank, but also necessary, so I do what has to be done.

I was 44 when this all started. Each time I thought it would be the last. Now I use tricks to make things work in my favor. For example, to beat scan anxiety I make an early morning apptmt for the scan and go back the same day a few hours later for the results. Thankfully the breast clinic gives the results within an hour.

How are you managing everything on your plate?

kri312
kri312
in reply to anrean

Good days and bad....started with therapy right away but now backing off as I feel this is like another doctors appointment - I seem to function best with denial. Not sure if that is the healthiest way but if I don't have to think about it, it isn't there. I have all my appointments lined up for what will be my first round of 6 month follow up appointments - the new normal I suppose. I am back running and aside from occasional shortness of breath and a small residual cough - would never know I had surgery! Some days I am in disbelief- healthy VERY active never smoked - just doesn't make sense......I find busy is a good thing - the mind can go in dark places when left idle...I have found comfort in hearing the long term success stories of others on this site..thank you for sharing

Kiera49
Kiera49
in reply to anrean

Hi Anrean I used to be very active running, doing karate and beaver scouts and church then all of a sudden couldn't do anything and was on o2 24/7. Had 2 concentrators in house and take o2 tanks when I go out. Now I have portable concentrator when I go out made such a difference Treatment is working for now so only need o2 when I go out. Portable concentrator means I'm able to go on bus and walk the dog but still have limitations, I have managed to get back to Beaver scouts and church.

anrean
anrean
in reply to Kiera49

Glad you are more active!! The O2 will help you keep up with the activities you love and give you more independence. I found that the personal concentrator did not give me enough time, so I haul the tanks and get more time to be out and about. Always have 2 backup tanks in the trunk. I have a thingy that measures my O2 level and that helps me know when to slow down. Was surprised at how much I had gotten used to levels that are too low. Guess that is just my way of pushing through and not being willing to give in. Keep up the activities - it is so great to do what we love despite this horrid disease!!

Get some docusate s anti constipation drug and start by taking 2 pills on the day of chemo and 1 pill, 50 mg, once a day for a while. Pemetrexed and carboplatin cause incredible constipation ! I'm guessing other chemo drugs do the same thing.

Denzie
DenzieModerator
in reply to ElmerFudd314

OMG! They really do. I had cisplatin and etopicide. Once I was so badly bound up it was 5 days. I doubled up on the miralax after that. Then I was always gassy. Think step, *fart*, step, *fart*, step, *fart*,

SusieJo1948
SusieJo1948
in reply to Denzie

Denise I'm so glad you have a sense of humor. I have a sick sense of humor. Step fart I laughed so hard my stomach hurt and I had tears running down face. I still laugh when I think about it. Thanks for the smile and laughter. Love susie jo

The first time (lung) I would tell myself what I did tell myself "you have survived worse, you can survive this". I also would have told myself to stay away from Roswell (I went there for the chemo). The second time (also lung), I would have told myself to have the surgery. Being down to 3 lobes is not a place I want to be, but the cancer would be gone.

I felt that I had to edit my original response to you question because of another post I just read asking if surgery was a viable option for cancer. You said that surgery is the gold standard for cancer, you are not the first person I have heard that from.

I don't know about other cancer centers, but I live in Western New York State. I am always hearing the commercial for Roswell Cancer Center that says "if you or a loved one has just been diagnosed with cancer, don't rush to surgery. Before you make any treatment decision, just spend one day with us". According to them, they can offer treatments and options that may not be available anywhere else, that surgery may not be your only/best option. Sounds to me like they are just trying to drum up business.

Denzie
DenzieModerator
in reply to KatherineK

KarherineK,

Consider putting what you edited out back in. Patients come here looking to know what your experience, your AUTHENTIC experience was. Not what you think that I, as moderator, or any HU staff want people to read.

Surgery is not right for everyone, even those who qualify for it. You can help others best by sharing the what’s and the whys. Gold Standard or not.

Roswell Park ads sound like the same ads that run for UMich and Karmanos here in SW Michigan. Of course they’re trying to drum up business! As an NCCN affiliate they can offer clinical trials not offered anywhere else (ex: Cimevax). They also have the latest equipment and tools not available at regional hospitals. BUT they are not infallible.

KatherineK
KatherineK
in reply to Denzie

All I took out was that I may have opted for chemo and radiation the second time around instead of going right to surgery.

But that was self pity talking, I have had a hard time lately, and I had been feeling a bit sorry for myself, and starting to wonder if I made the right choice. But my surgeon was right, and my oncologist was right, the best option for me was surgery to remove the cancer. I was lucky both times that I had that option.

I have however all ready told my husband that if I get another lung cancer, I'm keeping it, it is mine. (I can't afford to lose another lobe).

As for Roswell, it is a good hospital, but with the exception of most of the nursing staff, your not a person, you are the number they assign to you on your green card. You don't even see your doctor during after cancer care unless a test comes back positive.

Kate

Denzie
DenzieModerator
in reply to KatherineK

Thank you for sharing your experience. It will help someone.

I totally understand why you feel the way you do. I’ve accompanied friends to infusions at UMich. They rarely ever see the same nurse let alone the doctor. I had my treatment at a regional hospital less than 3 miles from UM. I had the same nurse almost every single treatment. I saw my radiologist every week khans my oncologist every 2 months.

When I experience progression I expect to go to UMich to get a second opinion on treatment plan but have it implemented at the smaller regional hospital .

So sorry you’re having a rough time right now. Have you considered getting a phone buddy or mentor? The Lung Cancer Alliance will match you with a patient of similar background and disease load.

KatherineK
KatherineK
in reply to Denzie

Never really thought about a phone buddy or mentor, but I will now. I have my hubby who is very supportive, and a few close friends. But no one understands like someone who has been there. That's why this site is so invaluable.

Thank you.

I hope this response is coherent. I was diagnosed with adenocarcinoma just shortly after having a lumpectomy for breast cancer. I was still reeling from that diagnosis and surgery. Fortunately, a friend who had had the same diagnosis twenty years prior, insisted on accompanying me to the visit. Though I was shocked and stunned, I had living proof that lung cancer is not an automatic death sentence. She was very supportive throughout the process and shared her experiences, fears and responses both physical and emotional. Another very fortunate thing was that I had already established a relationship with my oncologist who helped me through the process and with a referral to an excellent thoracic surgery team. I agree that though our doctors are the experts in their field, we are the experts on our bodies and need to work with our doctors to help them understand our individual responses to treatment. The support of others is also essential to our recovery and for learning to live with this disease. Between family, friends, and communities like this one we have the best chance to live well with cancer.

Denzie
DenzieModerator
in reply to JeanE41

So reaching out to others who’ve walked in these shoes made a difference for you in your survival. That’s important.

Another important point readers should take away from your entry is having a strong support group.

Including our existing medical team.

Understanding that it’s not an automatic death sentence and sharing that knowledge brings hope to people searching this board looking for help.

JeanE41
JeanE41
in reply to Denzie

I would add that having medical personnel that you trust and that treat you like an individual is important. It has taken some work and adjustments to establish that kind of relationship with my oncologist. We work as a team, which is very important to me. I can trust him to give me the straight facts and his best advice and to respect my decisions.

I tried to help. All the tpeople here are great we care of a lot about each other. When health unlocked and free to breathe have been great. But I believe it was patients that keeps it The best . thanks all of you that posted. I wish I wasn't sick but I'll be here as long I can. Love susiejo1948

Denzie
DenzieModerator
in reply to SusieJo1948

SusieJo, I hope you’re with us for a long time. I know you’re very sick and we all want you to be comfortable. When you have a good moment let us know how you’re doing.

Your point about it being the patients here that make the site so valuable is spot on. Doctors can tell us what we might expect but they don’t get it like other patients. No one who hasn’t faced lung cancer as a patient or as the caregiver really understands the stresses and joys that we find.

If I could go back and change anything. I wouldnt change a thing because o would not have met you. Denzie or all the others that make this community what it is today. It's a great place to be. Because all of us warriors made it what it is. You'll here from me soon. I'm still here. Love susiejo

I would say RELAX,,,,its all going to be ok.

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