No treatment or surgery
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Outra
Member Posts: 8 ✭
Did anyone diagnosed with early breast cancer (invasive) decide not to have any surgery/treatment? This probably sounds crazy to most of you, but I’m struggling to agree to any of the options being offered to me after recently being diagnosed. I’m 40 and due to an existing long term issue I already have chronic pain in almost all of my body which causes fatigue and zaps all of my energy - I don’t have the strength to go through this as well. I don’t have the “I’m going to fight this” energy that others seem to, I’m already completely exhausted.
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Hi Outra, sorry you're in this position. What treatment has been suggested so far. I'm sure there is someone out there that has declined treatment but I guess the outcome may not be favorable. Only you can decide what is best for you. You're only young still and maybe treatment may not be as bad as you expect. Sorry I'm not much help but I wish you all the best.0
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@outra I think it depends on your diagnosis, I know through both of mine I thought hmmm I dont have the energy either time. I have fibromyalgia, diagnosed over 10yrs ago, but its never stopped me from much, incredibly hard you bet!!! So I really think you need your complete diagnosis to make a decision. I had very aggressive treatment for DCIS in 2011, radiation and tamoxifen for 4yrs and I still had a recurrence in the same spot. Scary!! So I think now, what if I hadnt done anything back then, Id hate to think what would have happened. I did have to have Chemo in 2015 which I was so against and this year opted for a single mastectomy/diep flap recon. Ive been happy with my path so far its so personal honestly, and only you know what is best for you. I think I have peace in knowing for me, Ive done everything I can, there isnt anything more now. All the best xx Melinda0
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Hi @Outra, I did have surgery and had early BC. Had a tumor 2.7cm and a satellite lesion that was benign (didn't know it at the time). Had no lymph nodes involved but opted for a mastectomy with immediate reconstruction as I didn't like the idea that I already had other abnormal cells in the breast. Because of the grade 1 status and no node involvement and having the mastectomy I did not need radiotherapy or chemotherapy just hormone therapy as mine was hormone positive so. As for having no strength to deal with treatment it must be incredibly hard to have to deal with chronic pain but please also know that the breast cancer itself can cause debilitating fatigue so there is the possibility that you may improve after surgery. Wishing you all the best with your decision. Let us know how you are going. Xx Cath0
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@Outra Hi! Good on you for joining this forum and having an open honest discussion about your thoughts. I never had the thought process of no treatment or surgery - all I wanted was to be rid of it!
There are heaps of resources within this site as well as Counselling as this is a decision. although it is yours to make, shouldn't be taken lightly with you having regrets later. Counsellors will give you good coping mechanisms as well as us here. There's always someone on the forum at all hours that will come on and comment. No judgment!
Please take some time to research before cutting yourself off from opportunity of medically being rid of cancer. It is a huge decision and I wish you wellness. Take care
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Hi here @Outra Do you know your treatment plan yet?. And have you had your scans to see if everything is ok... I’m assuming you have but I if not I would be waiting to see all the results and the treatment plan first to see what the prognosis will be with or without treatment. I’m sure your oncol will consider the best treatment with the best outcome considering your pre existing conditions. It will be a tough one for sure and no one wants to have chemo etc. but it’s your decision to make and only you can decide what’s best for you. I had a hubby and kids to consider too so the thought of not having treatment was a no brainer for me. I had triple neg breast cancer last year left mastectomy so i only had chemo and no radiation no lymph nodes involved all scans clear had early stage 2a with a 3cm tumor and still was recommended to have 8 rounds of chemo which I did. I’d at least consider the surgery to remove the tumor and see if there’s lymph node involvement and the scans check to see if it’s sneaky and hiding anywhere else. Just so I’d know what I’m dealing with at least. I had to have a two week break between my mammogram/biopsy and my surgery as that’s the earliest I could get in and the Mammogram said 1.8cm tumor and only 2 weeks later it was already 3 cm. So very glad I got it out when I did. Whatever you do dont leave it too late to change your mind and do the treatment as the little suckers can grow really quick and that might change your treatment plan. I also took the right boob off 6 months later as that’s what my gut told me to do. Whatever you decide you will be supported on this forum without judgement no worries about that for sure. margie xx
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@Outra, hi and welcome. What a hard decision to have to make.
There are so many treatments that are available, that vary in side effects and long term issues, that you need to take them one step at a time.
The overwhelming nature of a breast cancer diagnosis can stun you into blankness.
Depending on the grade, stage and nature of your cancer, many options are open to you and you get to choose which ones you will go through, though the specialists seem to assume you will go through them all, as I have/am without question.
Having been through mastectomy, I think that is the least difficult of the options to deal with physically, it opens up its own issues of finding clothes, especially if you only have one off, but could be all you need.
In order to make your choice you really need a lot of information and this can be difficult to process to start with.
I used a psychologist at the Cancer Centre near me to process my decision on whether to remove one breast or two ( only one apparently had cancer)
They were very helpful in steering me out of the mess of emotions and getting me to focus on what would ultimately make my decision.
I was going through an angry stage where I was highly likely to cut my nose off to spite my face!
The Psychologist was free.
Unlike the specialists who focus one the one area, the psychologist was helpful in dealing with all areas of treatment and my feelings about them. They also allow one hour and I didn't feel rushed in the appointment, unlike appointments with most of the specialists.
I also could come back several times to work on the problem.
The decision doesn't have to be treatment or no treatment, it can be picking and choosing what treatment will be the most benefit with the least amount of damage to your already compromised body.
I hope you can work out what you really want to do in this shitty situation, with as much information as you can. It really isn't fair, is it?
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Hi Outra Its tough to be in this space. I was in the same boat with early bc. When told at meeting with bc doctor what would be proposed I sat there like a stunned mullet cos the language they spoke was so foreign They said each step then handed me info then said they will handle all the referral process and I waited. Then came surgeon appt with suggested treatment Within the space of visits I thought how am I going to handle this. I ordered my kit, Looked at info I was given and found out as much as possible that my head could cope with Many discussions with my support network but ultimately took it one step at a time Chose some treatment as recommended but not others. I am comfortable with all these decisions I had lumpectomy which gave greater pucture of what I was dealing with in Grade Stage if it was hormone + and also if nodes were involved. So then I could have a greater sense of choices available PM me and I can give you more info It is a tough decision and there is lots of support and wisdom and experience on this site Take Care0
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Hi @Outra,
I'm the Manager of Member Services at BCNA. Looks like you are receiving some fabulous support from other members here but just wanted to let you know that we have nurses on our helpline that you can talk to about your concerns and they can help you work out what questions you have for your treating team. They can also help link you in with counselling if this is something you're interested in. Our number is 1800 500 258.
All the best with your decision-making0 -
It's daunting prospect for you with your current chronic issues but not everyone gets fatigue from chemo or other treatment - I didn't. Remember that no-one can make you have treatment but also that no-one can make you stay on it. Agree with the advice given about seeing what your treatment plan is, but then there is an option to give it a go and see how you handle it. A mastectomy is often simple and straightforward. I had virtually no pain, and healed quickly. Counselling may help with the anxiety and anticipation but chronic pain is chronic pain, and I can well understand your reluctance to add to your load without some guarantees, which is probably not possible. I always think some treatment is better than none, but picking and choosing, with a little bit of try it and see, may be the way to go.0
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We really do not want to do this stuff. I think @Afraser is on the money with the advice about the mastectomy, assuming that is even suggested for you. If doing nothing is likely to kill you, a mastectomy has the potential to remove the cancer if it seems to be confined to your breast and avoids a situation where you have a lumpectomy and find further surgery is recommended. Which means making, or resisting, more decisions. It means committing yourself to one action which--depending on your diagnosis--may give you the best chance of survival.
Losing a boob is horrible but, physically, the anaesthetic and drains are the worse part. There may be a bit of puddling around while you heal, but, if you can get your head around the concept, it's probably the least intrusive action.
I personally know three ladies who, for a variety of reasons, have decided not to undergo any treatment. Two of them are really struggling to cope with the idea of a toxic tit and associated cancer still attached to their bodies and, in my opinion, are having a tougher time of it than they would have if they had removed the breast. The other doesn't give a hoot and is just living her life. I guess it depends on your temperament and view of the world. Marg xxx
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Hi @Outra, I'm 63 and have feared chemo because I believed it would kill me. I supported many friends thru gruelling treatments, all to no avail. But none of them had breast cancer. I always said to myself I'd have an immediate mastectomy if I got breast cancer. I was not afraid of radiation. I had it all covered, just in case the unbelievable happened. My breasts are so small mammograms were never an option. 2 years ago my regular ultrasound said nothing to worry about. In May I had another ultrasound and had 2 locally advanced tumours in my right breast. I said great, take both my breasts off and I'll get cute little implants.
They said I was INOPERABLE. I'd never heard such a thing.
They said my only option was chemo. No ifs, buts or maybe's.
I didn't feel that I had any choices at all to make. No one suggested anything else. I was now watching the tumours pull my tiny breast out of shape. I started chemo within weeks, terrified beyond belief but trying to appear brave and nonchalant. That was in June, I've still got another 5 weeks to go. It hasn't killed me but most surely has changed every aspect of me. I grieve for my old life and wonder who I will be at the end of all this? I thought I had a good perspective on life already. Due to the dreamlike nature of (my) chemo, time passes unnoticed. I can't remember yesterday. Mostly, I feel like I've been pushed off the merry-go-round and need some time to recover before getting back on.
If I had been given options things might have turned out differently.
I still don't know what the breast surgeon is planning.
I will definitely be taking a statistician with me when I have my visit with the radiologist.
I am curious to know of your options and what you choose.
I wish you all the best, whatever path you go down.
Cheers
Patsy1 -
I guess you have to have an honest look at what will happen without treatment.
The cancer won't go away...that is a certain.
How it will progress and what that will mean can vary a lot.
No treatment will most likely result in fatigue as the bodies energy still goes trying to fight it.
Pain will very likely increase as the tumour expands and possibly moves to other parts of your body and causing additional pain.
So whilst I understand the overwhelming thought "I am not strong enough to fight it"...the reality is, doing nothing will still lead to increased pain and fatigue so it becomes a lose lose situation.
Many of us have been mentally and physically exhausted due to other issues at diagnosis. However having a stong "fighting spirit" is not a requirement. You can go in tired and fed up and overwhelmed with the whole process and still have fantastic outcomes.
Everyone is different. For most the thought of surgery is worse than actually doing it.
Not everyone needs chemo..and with those that do some people experience few issues.
Most women find radiotherapy less of a problem than they thought it would be.
With all treatments....some have a bad time...for others it is all just inconvenient. You won't know which you will be until you start. The reality is, if it gets too much, you can always stop. Your oncologist will determine the best way forward with your health. Your breast surgeon for surgery.
If you choose to not proceed....make sure you refuse with full understanding of what that means.
You are stronger than you think. We all have had to learn this. Take care. Kath x
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