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Let's discuss...decision making
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Treating cancer is complicated. Sometimes there is a recommended treatment or combination of treatments that has the clearest chance of success. Or you may be given a choice between different treatment plans that have similar chances of success, if there isn’t a medical reason for you to have one rather than the other. Becoming active in your healthcare helps you understand what is happening. But it can be very hard to make a choice about something as important as your treatment.

  • Did you have to make decisions about your treatment?
  • What tips can you share with the community about how you made your decision?
36 Replies
Min
3 Posts

I do have to make decisions and I co-operate with healthcare team. They explained everything during our discussion, so I don't argue with them, follow the steps, and read brochures. Hopefully I will be cancer free soon.

LFW
26 Posts

I was not given an option for treatment so put full trust in my surgeon and a panel to come up with my plan. They’re the experts. But I know myself.

Emmamarie62
17 Posts

I have been involved in the decision making since being diagnosed and during my diagnostic phase my family Dr was off on maternity leave. She had a NP replace her and he was extremely helpful in providing me updates on test results and connections with other women going through decisions related to surgery. When I found out about the need for mastectomy it was then a series of decisions - should I do bilateral mastectomy, what about reconstruction which is important to me and what type of reconstruction. Then discussions about potential treatment based on results after meeting with the Radiation Oncology and Medical Oncology. I had regular appointments with my family Dr, surgeon, plastic surgeon, NP radiation and Medical oncologist it did feel at that time I was well connected however on a constant appt with someone medically. Post reconstruction surgery one side failed and I was in and out of hospital constantly for Vac dressing care then another surgery. I am waiting for further reconstuctive surgery on the one side and regular IV infusions q 6 months Zometa as Letrazole can decrease bone density so will have these tests regularly as well.

Northernace
11 Posts

Decision Making. I did not have an option. It was surgery or die. Fortunately the surgeon was very skilled and was able to remove all the cancerous tissue. I am now cancer free for nearly three years

ACH2015
2306 Posts

I sought out a 2nd opinion. The first oncologist did not offer any treatment plan, and was writing me off.

I asked a lot of questions and came to understand that I was in for a large multi faceted treatment plan, and there was no way to reduce the depth of that treatment plan. Once I accepted this, I trusted the medical team's approach and elected to participate in the plan. It was aggressive, and I wanted it to be my best shot at eradicating the cancer at the earliest point.

A recurrence resulted in a choice of treatment. As I had already had chemo / radiation and multiple surgeries I was offered an immunotherapy clinical trial as to avoid a 4th surgery the surgeon wanted to avoid. I chose the clinical trial, and had to have that 4th surgery after the immunotherapy failed.

My tips for anyone faced with intervention. Trust your instincts, ask the tough questions and understand the process moving forward. Weigh any choices as risk / benefit thinking. The more I understood and accepted, the simpler these choices were in moving forward. Acceptance was a big part of decision making for me, as my prognosis was dismal. But that is how I think, and that is what worked for me.

I hope this helps anyone reading.

ACH2015

Sag77$
1 Posts

I am 44 and recovering from lumpectomy cured. My dad gets kidney and adrenal cancer and just came out of surgery and they got it all.. it’s been a rough year and I’m so sad all the time

LFW
26 Posts

😘

Whitelilies
2343 Posts

@Sag77$ Hello and welcome from NLL! So glad you connected here with us, though I am sorry, for the reason…..Please know you have found a group of people….eager to listen and share and support each other…..Have a look through the site…there is a lot of helpful information.

I hope your recovery goes well…..and it is good to hear, “They got it all”, for your dad…..wishing him too, a speedy recovery…..Yes, oh my….it has been a challenging year…….

Perhaps you can reach out, to the hospital's Social Worker (oncology dept)…..arrange an appt/over the phone etc….just to talk, connect…they are a wealth of resources…..perhaps there is a support group near you….joining is wonderful….connecting with others…..and feeling “less alone”……..

Perhaps also try to do just 1 thing, each day; for you! Yes you!

An outdoor walk….get a coffee at the local coffee shop….call an old friend…read a good book…re energize you!

Please meet @JustJan Thank you so much, if you could share your experiences, here (Breast), to support our new member @Sag77$ on a similar path/Breast….I am hopeful to connect our new member with others…..to say hello and more……

Welcome SAG

We are all here to support you!

Keep sharing….we are listening….

Whitelilies

#Newmember

Whitelilies
2343 Posts

@Sag77$ OOPS…..I posted a welcome in the wrong area…….

I do hope @Sag77$ sees this Welcome!

Oopsie

Whitelilies

Boggle
12 Posts

Great topic. And I actually have a decision I still have to make, to get a port a cath or not.

From reading about people's experience, I know I prefer a port over a picc line. My oncologist wouldn't have recommended it (neither) but is OK with it when I asked for a port (since overall infusion time will be 13 months, 21 cycles, blood work before every cycle), so I am now on the wait list for a port. As I read more about it, I am not sure it's worth the risk. Then at my first chemo infusion, the chemo nurse commented that I have very small veins and would probably benefit from having a port. 😔

At this point, I really don't know if I'll do the port when the call comes. Am I overthinking the port surgery? But it is.. after all, another surgery.

mbrad24
2 Posts

I did not have any input into the decision-making with my Lung Cancer diagnosis. I was having surgery and that was that. However, now that I am a Lung Cancer Advocate, I have learned so much about Lung Cancer from Stage 1-4 and encourage everyone to be prepared when talking about treatment options for your Cancer. Knowledge is power!

ACH2015
2306 Posts

@Boggle

I don't believe you are over thinking this. A PICC Line is still minor surgery, and an easier removal after treatment. I had a PICC line myself for chemo that occurred over 5 months. You can't get it wet (have to wrap the picc line for showers etc…) like you can a port a cath. This link from the CCS talks about the different types of CVC's. And I quote" Your doctor will recommend the type of CVC you should have based on your situation and how long the CVC may be needed. A CVC can be inserted either in a special x-ray department with local freezing and light sedation or in the operating room using general anesthetic (you will asleep)".

https://cancer.ca/en/treatments/tests-and-procedures/central-venous-catheter

Hope this helps you in the process.

Keep well

ACH2015

law1
716 Posts

Decision-making……that was a large component of my treatments and fight. I asked for pain killers before I even was given the option….I was crying in agony as I walked into the clinic the first day, and the staff was so supportive I was shocked, yet encouraged.

My treatments were presented to me and immediately I said YES to radiation and a big fat NO to chemo. The only doctor who was pissed at me was the Chemo oncologist! I think he was just overworked already.

I inquired and researched my oral cancer diagnosis and I asked pertinent questions; additionally I had frank discussions with my medical team. I felt fortunate to have been treated so openly.

elle29
1281 Posts

I knew what I wanted and that was the best , noninvasive and keeping me functioning ! I got it and now NED !
So what am I doing here 👩‍🎨✍️🤷‍♀👯‍♂️🚶🏻‍♀️🐕‍🦺🧘🏼‍♂️🤽🏊‍♀️🏌️‍♀️🤺waiting , resting my injuries to heal and lab results gosh have not heard from local dr , to take my meds now Fri !

Kuching
390 Posts

I’ve been lucky as far as decision-making goes - it was never really an issue. I went straight onto targeted therapy, and that was a no-brainer - a pill a day was obviously much easier to deal with than chemo. The only decision I really made was to switch from Iressa to Tagrisso when I was given the opportunity, and again, that was an easy one, thanks to the information I already had about it from Cancerconnection!

So my only tips would be: 1) do your own research, so you can make an informed decision, and 2) decide how important quality of life is to you, and factor that into your decision.

KLB
16 Posts

@Boggle

Hi. I have had both a PICC line and a port a cath (still have the port). The port surgery is minor, two little slits, one about 3-4 cm the other just 1 cm. Your veins could get worse over the course of treatment, that is what happened to me. I'm very glad to have the the port especially since treatment will be over a long period of time. I hope this helps in your decision making.

Mosi
117 Posts

Really interesting topic Lacey. Since September of 2021 I have had chemo, surgery, radiation, and hormonal therapy. Some of those treatments have been combined. Each step of the way I have been presented with a plan and then asked if I was willing. I come equipped with questions and my own research but still feel this is not my area of expertise. I believe that the medical team will have better plans when I state my goals but I’m still swimming in unknown territory. I do appreciate the drs asking however.

supersu
1170 Posts

great topic!

in my situation there were very few decisions to be made.
the diagnostics and lab results really dictated the therapy. the options were: do it or not.
I consented quickly and completely to everything presented, because of course I wanted my disease to be removed. I put more time & thought into purchasing my air-fryer….which I love BTW. ha ha

I had/have complete trust in the medical professionals that they have/are doing the best job they can for me with the information that they have.

if my status should change, and I am faced with treatment that requires this or that decisions I would research all options. coming to these forums would be my first line of defence, as I find the information shared here by folks so valuable. nothing like learning from somebody who has walked those miles already.

thank you to everyone who shares so generously of their story.

#decisionsarehard #cancerstory

Whitelilies
2343 Posts

@Lacey_Moderator Hello……what a great discussion starter!!

In my case….(Colo-rectal cancer)….there were basically “no choices” to be had…..the plan was assigned to me. I was “told” radiation was needed first….to TRY to shrink tumour….and I was “told”, from the get-go (I just wanted to GO !!! ), I would need an Ileostomy bag…..(never “heard” the word temporary).

Doc Lost Me At “Bag”.

My only “choice” was Coloplast or Hollister Bag.

I am not a researcher by trade …..so I trusted my Surgical Oncologist, and followed all instructions to a “T”.

T = Terrific Doc

T = Thanks to Doc

T = Tumour shrunk

T = Trust

W = Whitelilies

MT2
21 Posts

The type of cancer I have is unusual and the protocols may not apply. It’s a vulnerable place to be in : uncertainty. I decided to take every treatment offered (chemo, radiation, brachytherapy) despite not knowing what percentage survival advantage it gives me. I based my decision on doing more rather than less and then no regrets of “ should have done x,y,z…”. Also I felt so very sick before surgery (losing weight, fevers, weakness) and my gut told me this is an aggressive tumour that needs a sledgehammer. Neither reasons are scientific but they make 100% sense to me.

D1955
122 Posts

Decision making can be tough. You may have to weigh the risks against the outcome. Look to see if it brings you closer to another options.

Being a care partner for my spouse who has a chronic cancer that will never go away (hopefully someday they will actually find a cure).

We have had to weigh the risks of surgery that may or may not give the desired outcome (it did not)

But it put him one step closer to qualify for a newish drug regimen that has been a good send.

We now pray that the government keeps covering the costs (over $10,000. per month) of these drugs and that we get many more years together.

#CLL

TT53
253 Posts

I was diagnosed in June 2019, before Covid and everything moved so fast. Now that I have time to reflect, I would have asked a lot more questions. I went from one lumpectomy to the second lumpectomy within a month because they could not get clear margins. When I was supposed to have a third lumpectomy, again within a month, is where I went against the medical advice and chose a mastectomy.

For me, that was the hardest decision. My tumour was 3.5mm, found really early, so it was almost like, it is so small, you almost don't have cancer. You are exaggerating with considering having a mastectomy. It took me over a week of flipping back and forth, when I finally had this peace come over me and I felt good about going thru with this surgery.

The advice I would give everyone is, be nice about it, but ADVOCATE for yourself.

I think there are two parts to this, the medical team has their knowledge and one needs to follow that, but on the other hand, you know yourself and have to follow your gut feeling of what is best for you.

Hugs to everyone,

M..

DSJ
99 Posts

Yes, like most men diagnosed with prostate cancer I had to choose between surgery or radiation + ADT. I did my research made my mind up early to go with surgery because I did not want to deal with ADT. The annoying part is one has to wait several weeks and meet with the surgeon and the radiologist on separate occasions weeks apart. I felt precious time was being lost while waiting for these consultations.

Then I had to decide between robotic surgery or conventional surgery. I chose the robotic surgery and glad I did as a;; nerves were spared. The surgery wasn't fully successful so I was offered a choice to participate in a clinical trial using a PET scan using radioactive dyes to find out where the cancer was and chose to do that. This was followed by radiation plus two years ADT despite my original desire to avoid ADT. No choice there other than to say "no thanks" and live with the consequences.

Last week I completed one year of ADT and was asked if I wanted to continue. I told the PA it is like choosing between something bad and something really bad so I chose to continue. (Someone I know who is younger than me chose to discontinue ADT after one year due to the side-effects but recently experienced a recurrence for which there is no cure and that weighed heavily in my decision making.)

As for tips, do your research and ask lots of questions. One key question to ask is if the proposed treatment is curative in intent or is it life extending? That answer may help you decide your answer.

Hello there, I too am awaiting a port-a-cath. I was not given the choice but having a close friend whom had the picc line for the better part of 2 months. I am comfortable with the port. I did do some reading to understand exactly what it is and I was surprised. I am not so comfortable with things messing with my heart. That being said, I have researched and had Oncologis, surgeon and my friend (as a patient undergoing chem/immunotherpy) and they all seem to point me into the port direction. a larger vein in needed for extensive treatment as the chemo can “harden“ smaller veins in the hands or lower arm much quicker than that if a larger vein. It can essentially ruin the structural integrity of the vein itself causing more issues. The PICC line runs the length of the vein from The upper arm and close to the heart. (Apologies as I do t know the official name of the vein I speak of) It is inconvenient to do everyday things like shower, etc. and, from what I’ve been told, is much much easier to have it “pulled“ out and then it’s a whole thing.

While a port isn’t for everyone, I’m merely just shedding some light from my friend who has had hers now for a few weeks. she barely notices it, it’s gives her much more freedom everyday. She barely feels it already and no pain associated with it at all.

hope this helps. I do apologize for my lack of medical terminolog, etc.

Otterjam
100 Posts

Similar to what some have already written here, I don’t feel there were any choices on the table other than to proceed with treatment, or not. I was informed they could only treat me once and had to go in hard, and immediately. Surgery was not an option. I suggested I get a second opinion but was told I had already been diagnosed so no second opinion was needed. Every step of the way I was being told to do this or that, and I was so shell-shocked I couldn’t even think straight. Looking back I think I really needed help with processing information, making decisions and taking care of administrative stuff on top of all my appointments and consultations. I have large gaps in my memory. The only single decision I consciously recall making was to not take pain killers (they prescribed hydromorphone); I wanted to be as alert as possible (I was afraid of not being able to take care of myself - like going to the washroom, showering, dressing, cleaning my sores, etc.) And I had to fight my pain manager who was pressuring me hard to take the drug to ease my pain and aid in my recovery (which was severe and extreme and interfering with my ability to think straight, sleep, function). I completely handed myself over to everyone else to make decisions for me. I trusted the system, process and people. I am still not sure if I should have - but don’t think there was any other option for me. I was 100% winging it. There were quite a few glitches and surprises along the way, that’s for sure. Hope this helps.

WSB
9 Posts

After they had done all the scans and completed an internal “exam” as I will call it where they wanted to confirm if it had spread to my bladder, bowels, etc. My radiation Dr. shared her plan for my treatment, literally minutes after I woke up from the exam. Luckily my husband was there to be the functioning person, however, I had already (pre-cancer diagnosis) planned to get a hysterectomy and was very set on this being what I wanted. My doctor wanted me to have the opportunity to speak with a surgeon to discuss this option and set that up for me.

The surgeon showed me scans and shared how it would go, but explained that they could not guarantee that they could get it all and so there was a real chance I would have the surgery and then still have to do radiation and chemo, which they prefer not to put patients through both major treatments. It helped me make up my mind that we would just go for radiation and chemo. So far it did its job. I really appreciate that although my doctor was clear it was her expert opinion that I go that route, she understood it was important to me to speak with the surgeon, especially considering I didn't know her well then and the trust wasn't built yet.

Boggle
12 Posts

I find the whole process of getting second opinion a mystery. If I want one, do I ask my oncologist for it? My oncologist accepted me as a patient from my breast surgeon's referral. Do I then ask another referral from the breast surgeon? Do i need all these tests done again, which took 1 month time in total? Don't the oncologists at the cancer agency consult the cases in groups?

I am not saying I want one, i am very comfortable with my medical team. It's more that, inevitably in the process of sharing with friends and family, there would always be questions raised about getting a second opinion. But I guess if I wasn't comfortable with the doctors I do have, I'd want to figure out how to get a 2nd opinion.

Boggle
12 Posts

Thanks to everyone who shared their experiences with getting a port.

I am still on the fence, but that's OK. They haven't called me for a surgery yet. :) still have time.

My 2nd chemo was yesterday. This time the nurse (different from last time) didn't comment on my “tiny veins” in the underside of my wrist. She found a good straight one on the side of the wrist. That made me happy.

The total number times of chemo injection would be 21 times. I don't know the probability of the veins “collapsing”, and I don't like that the port could mess with the heart, blood clots. Feels like rolling a dice either way.

A bit bummed that a port wouldn't save me a poke when it comes to blood work though. I thought it'd cut down half the pokes! The nurses at the laboratory aren't trained to draw from the port.

Decisions decisions…

Otterjam
100 Posts

@Boggle wow you sound so totally rational and level-headed. That’s wonderful! I wish I was more like that when going through all this. Regarding the second-opinion issue, I wish there was a manual on how to go through the entire cancer journey. I must admit that my knowledge of getting ‘second opinions’ is limited to medical shows on tv and Netflix. 😆 I was so scared and perplexed that I had been diagnosed (I think the first stage is called ‘denial’ for a reason). I was totally on my own doing everything. I didn’t have a partner with me or an advocate. I had no prior relationship with the doctors telling me what was wrong with me or with a critical illness. Relationship-building is super important (I do have trust issues), especially with something so personal as my health. I couldn’t figure out how I had cancer. Lol You would make a great advocate! 😊

ACH2015
2306 Posts

@Boggle

This link from the CCS talks about many facets of getting a 2nd opinion about treatment. https://cancer.ca/en/living-with-cancer/coping-with-changes/working-with-your-healthcare-team/getting-a-second-opinion Normally one would seek a 2nd opinion before treatment starts, or if the current treatment is deemed ineffective or too difficult to deal with. I sought out a 2nd opinion myself, but many of us are confident in the plan moving forward with our initial oncologist. Research and asking the pertinent questions help us feel confident or tell us it might be a good idea to get a 2nd opinion.

Hope this helps answer some of your questions.

ACH2015

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