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MelV83
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Joined 1 year ago
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Lumpectomy vs mastectomy
Hey everyone, I finished chemo on the 4/4 and right after the Easter long weekend I was kind of ambushed with an early surgical appointment to sign the consent forms for surgery. I didn’t have my normal support person (my sister) with me and I don’t know how I feel about my decision. To give some context, when I was first diagnosed in October last year my opinion regarding treatment was to go hard and fast and just kill this damned thing so I can move on with my life. The surgeon wanted to initially do a lumpectomy and I refused and asked for a mastectomy. Then on a subsequent appointment once I had gone and done some research I asked the surgeon if he wanted to do a lumpectomy because I was going to have radiation and he said yes, that is would protect my lung tissue to keep the breast tissue. I then asked if I could have a mastectomy after and he said yes. Then in my previous appointment before Easter he said mastectomy and not lumpectomy, and there was a bit of confusion (and I felt I was being gaslit, not a term I use lightly) as I reminded him of what had been discussed previously and he told me I wasn’t in the right frame of mind to be making decisions (I am struggling mentally but with other issues, not the treatment plan as I understood it). So when I got to this new appointment, I tried to explain what had gone on and asked what my MDT had decided. The registrar I saw said they recommended a lumpectomy and clearance of 9 lymph nodes. The way he explained it to me was that it was better they take the most minimally invasive path as I wouldn’t likely get skin and nipple conserving mastectomy. That it was better to take a little with the option of more later rather than taking it all when it’s not considered necessary. I signed the forms at the time after stipulating that if I wanted one later that they could do that and he said without cancer it would be a low priority but yes. A week after this and I don’t know if the decision is sitting right with me- those who have had the lumpectomy and axilla clearance, how did you feel? And did you need to go back later and have revision surgery to take more margins or have the full mastectomy?Re: Today was D Day
Sorry everyone for dropping off the face of the earth- things have been super difficult for me and I have kind of withdrawn into myself a lot. First update since the last one I posted was that back in January I had a rather dramatic time getting port bloods taken and ended up with chest pain, a code blue called on me in the chemo suite, rushed to emergency with several days in hospital and left with a bad dose of covid for my trouble! During this time I also found out that I have arthritis in most of the major joints of the body- shoulders, sternum, hips and knees. The intense pain I have experienced almost daily since has finally been managed with heavy painkillers, which I take almost every day just to function. My right hip seems to be the worst, so it seems my symptoms were exacerbated by the paclitaxel. One of the nurses was trying to help me figure out why this pain might be happening and found a study on how the pain can be an early sign of peripheral neuropathy. Well, 2 weeks later I started getting those symptoms- mainly in my right thumb and forefinger to start, but it has spread. I have also developed motor neuropathy in my left leg and have had to swallow my pride and start using a walker. I finished chemo a week ago today, managed 11/12 doses and refused to do any more. The last dose has turned out to be a doozy and I have been very unwell and the pain has not reduced as I had hoped. One final bit of not so good news- my income protection claim was denied. The reason they stated was because the department revoked my authority to teach due to my medical condition, and I was not permanent nor had a contract that they were under no legal obligation to pay. I have been beyond devastated and my mental health went from coping pretty well to really being on the edge of a crisis. The isolation I have felt as even my family has stepped back in their level of support has been another blow when I needed it least. I have managed to get into the oncology psychologist to supplement my private one, but that doesn’t stop the bills coming. I just honestly don’t know how much more I can take, and I want off of this terrible ride now. How am I supposed to earn money when I am medically unfit to work, and yet don’t qualify for income protection according to a bunch of boxes that make it not their problem?Re: Is everyone sleeping or just not posting?
I struggle too with being awake late, but it was much worse before I had my staging results and treatment plan. I have the abc and sbs apps on my phone and I honestly just put on nature documentaries but laid there listening rather than watching and feel asleep so much easier because I wasn’t “trying” to sleep. I now also take 10mg of melatonin a night which gives me around 5-6 hours of sleep at night and then I nap in the afternoons.Re: Today was D Day
Just a little update from me: Port was inserted under general anaesthetic this morning. No pain at the port site but my neck has been really sore, kind of like I pulled a muscle all day. Slept away the afternoon (and naps are definitely becoming a regular thing now that I’ve started chemo), but was absolutely ravenous when I got home so made sure I ate a good lunch, since I likely won’t be feeling hungry tomorrow. My hair has started coming out thick and fast- I had thought about shaving it but my scalp is so sore and sensitive that it hurts to even brush my hair so I didn’t want a hairdresser to be less than careful and hurt me. So instead of brushing my hair I just run my fingers through my hair every so often and come out with clumps. I’ve probably lost about 2/3 of my hair now. In terms of how I feel about that I expected to get a little upset about it but looking in the mirror things look relatively normal still, less thick so maybe that will happen. In the meantime I’m kind of fascinated with the process and how some parts of my hair are definitely not ready to go and yet other bits fly out the second I touch my head. Both my kids asked if they could keep some of my hair to touch when they felt sad and so I made a couple of wefts for them to keep. This has helped them deal with the first real physical change- my son is autistic so this gives him something tangible. Second chemo tomorrow and my oncologist wants to make the dosage rate really slow since my heart went a little crazy last time and mystified everyone. She wants to make sure it is definitely an allergic reaction before she upgrades my dose of steroids. It’s a hot one here in Adelaide tomorrow so hopefully it’s comfortable and less troublesome to have it with the port in.Re: Diagnosed this week and struggling
@Sammie_909 I found this article really helpful for understanding my pathology report: https://bcna-dxp.azureedge.net/media/dj1lnxxc/bcna_pathology_fact_sheet_2021.pdf I found my biopsy very painful, but the clip insertion was a little easier. I think once you are aware of it, psychologically you tend to notice things around it a bit more- I liken it to having dental work or losing a tooth as a kid and your tongue can’t seem to leave it alone… In terms of sleep I found that taking melatonin was helpful in helping me get to sleep. I recently stopped working due to starting treatment so I am used to being up by 6, although sometimes I can be awake for the day as early as 4 now and rather than lay awake and think I tend to pop on here (there is a night owl section) to see what’s happening or reply to someone, and sometimes I put on a documentary on my phone to listen to and relax more so than sleep (although sometimes that works too), or I journal. Then once it hits 6 I try to go for a short walk. Short naps get me through the worst symptoms of the day if I need them. i felt exactly like you before my first appointment with the breast surgeon- I just wanted it out of me “tomorrow”. Remember that everyone’s treatment plan will be different for your particular set of circumstances- and you will have a whole medical team that will meet and talk about the best way to tackle it. They will explain your stage and grade, and you will have some options to explore. And your breast care nurse will have a lot of information books and pamphlets to give you- take them all and just read through things a bit at a time, maybe even highlight parts and write questions next to info you want to ask about. Good luck at your appointment and please keep us all posted xxRe: Diagnosed this week and struggling
Hi @Sammie_909, so sorry to see you here. As someone with anxiety myself, I found that using my normal anxiety strategies were helpful. So with my diagnosis I needed to know as much as possible about my type of cancer and my histopathology report, and then seeing the results of all my scans. Asking the nurses and doctors to just be honest and upfront helped me more than anything. When I had worries, like that one of my tumours had grown I would just ask during the next ultrasound (which was for my clip insertion) for them to measure them for me so I knew for certain as I could see the numbers of the screen. I also found journaling a way to get out everything going through my head. If you are going through the public system they do have onco psychologists but the waiting lists can be long. I have found listening to the upfront about cancer podcasts the best because I could listen to someone describe how they dealt with something I was worried about. The BCNA helpline is also good to offer a supportive ear and some advice. Do you have a breast care nurse yet? I found mine to be a great personal support also. She got me earlier appointments and advocated for me to doctors and gave me information and support about things that have worried me recently. Not sure how much of that is helpful but honestly the work that has been done to increase survival rates of those even with metastatic disease is amazing to what would have been the prognosis 20 years ago. Please feel free to reach out if you need support and look after yourself x
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Young women & breast cancer
This group is for young women affected by breast cancer. In the context of breast cancer treatment, ‘young’ usually refers to women who are pre-menopausal. Here, you can connect with others who understand the unique challenges that come with a diagnosis at a younger age. We talk about things like fertility, pregnancy, early menopause, ovarian suppression, relationships, and the emotional impact of treatment and recovery. Whether you're newly diagnosed or further along in your journey, this is a safe space to ask questions, share experiences, and support one another. You are not alone during this uncertain and overwhelming time.
