Yesterday I got my treatment plan. Mastectomy with axillary clearance followed by radiotherapy with chemo possibly in the middle. I need to decide whether I want a reconstruction, when I want it & what type - implant (now), LD flap or DIEP flap (both now or delayed).
I was expecting to feel relieved, positive and I guess lighter. But I don’t. If anything I felt better before the appointment yesterday. I’ve been pretty much fine actually (I’ve posted about this before). Now I feel overwhelmed, like the decision is just too big and tbh want to run away from it all.
Normally with other health stuff a Dr will say what is wrong and what needs to be done or what medication you need. They make the decisions for you. This feels very much like it’s all on my shoulders, that I’m making what feels like the biggest decision I’ve ever had to make.
Has anyone else felt like this and been able to make a decision which doesn’t feel like just making any decision to have made it, rather than actually making a decision in a more measured and considered way? It’s like the decision is so big I just want to tick making a decision off my list and carry on. I don’t want this responsibility
I’m also finding it very stressful making decisions about treatment. I’m lucky that I saw pictures of my surgeon’s work to give me an idea of what I might look like after surgery. This prompted me to select the simple implant which is done alongside the operation. You then have the implants filled up with saline solution during further appointments - takes about 10mins. I’ve had mine done three times as it’s best to do it gradually. I think I might need a tiny bit more but I was so happy yesterday when I came out of the room and my breasts both fitted the bra cups perfectly, looking the same size through my clothes. Patience really worked, I’ve had no lasting pain from the mastectomy and have no scars anywhere else, which I would have had if I’d opted to have tissue transferred from other parts of my body. My main worry now is having to decide whether to do chemo or not as I have pleomorphic lobular cancer, which doesn’t always respond to chemo. I’m thinking of opting for radiotherapy and hormone tablets but I’m going to get a second opinion before I decide. It’s a hard decision to make because I don’t want to make to make a mistake, but I’m also a type 1 diabetic, which is something which will complicate the treatment. xx
I chose immediate implant as if it goes well that will be it and if I’m not happy or there’s a problem then that will leave all the options still open for a revision. I’m not wildly keen on having something that’s not natural and was thinking of going flat (even though I’m only having one side) but my surgeon is great and spent a lot of time explaining that immediate implant will save the skin - going flat would require skin grafting from elsewhere if I wanted any kind of reconstruction in future, I was hoping to get well first then think about how important it is going forwards to have a boob there but I really don’t fancy giving myself other body areas that are injured (although partly that’s down to underlying conditions and being a carer for my dad and needing an easy recovery). Could you discuss it with a nurse? I initially refused the reconstruction information but emailed the day after I met the surgeon and the nurse sent me video presentations of each option and booked me an hour and a half in person appointment to go through it all with me and to show me post surgery bras and drains etc so I feel much more prepared. I was also in a super hurry to get out of the hospital after the surgery but think one of my conditions makes me a higher risk for the anaesthetic and having seen how kind the staff are I’m happier staying in overnight.
Did you get a surgery date? NHS guideline is to treat within 31 days of diagnosis so it may be fairly soon but it’s definitely worth having the sit down with the nurse if that’s available in your area. Hope you can get some help from your care team that will allow you to feel more confident x
Surgery is likely to be just before Christmas. It’s 4 to 5 weeks from booking it. We spent about an hour with the Dr then 45 mins with the nurse. We were shown all the drains, bras, prosthesis and photos of previous patients. The Dr explained it carefully, but I just feel totally overwhelmed by what is available. It’s just too much to decide
After the weekend is it possible to phone the specialist nurse and speak to the one that was with you for the appointment and explain the overwhelming feelings. I am so sorry you are going through this.
I’m sure you’re not the only person who feels like that, I’d spent two consultant appointments absolutely insisting I had no interest in attempting any reconstruction but the nurse didn’t bat an eyelid when I changed my mind. Can you think what would be helpful to you in your decision? What are the most important factors that you’d want to drive your choice? I’ve found spending hours and hours discussing research findings with ai has been really helpful (the dive deeper with ai function on google search) but I’m autistic and I find a less personal approach easier. Having said that the nurse I saw was really kind and I’m really pleased with my surgeon. Is there anything about the procedure that worries you like the anaesthesia, time on the table, recovery, aftercare, hospital stay etc?
I’m not worried about the actual surgery itself, not looking forward to it by any stretch, but it’s a means to an end & a necessary evil. It’s the reconstruction decision I can’t make. The implants have risks with radiotherapy, the LD flap will affect my strength, the DIEP flap is huge surgery.
Delaying reconstruction means I can get the cancer treated sooner which I am keen to do but the asymmetry (I’m a G cup) is going to be an issue.
Dear @valeriear , Another type 1 diabetic here! I’ve had chemo, mastectomy, herceptin and letrozole. I was diagnosed March 2023. At the time I was on basal bolus using pens. I am now on omnipod Dash pump with dexcom 7. If I can help from my own experience please let me know. As for treatment decisions( in reply to others on here)Macmillan have a good booklet called Making Treatment Decisions. The BCN Someone Like Me service is also a good option if considering different options as one can ask to speak to several people who each made one of the decisions being considered. When I had big decisions to make I did a lot of research and asked for an hour to talk with a nurse face to face at my local cancer support centre. This could also me an option at a Maggies Centre. Voicing ones options and concerns out loud can often help to clarify the mind. All I know is that when we come to what is the right decision for us as individuals then one does feel at peace. Love Tulip x
Hi - it is overwhelming and I can’t advise you but can tell you of my experience. I opted for a DIEP flap at the time of surgery ten months ago. Recovery was very straightforward and I was pleased with the result. However, radiotherapy has completely wrecked the flap - it has twisted and shrunk considerably and I’d say I’ve gone from a D cup to A/B. My breast surgeon has said my choices are a prosthesis or mastectomy and implant. So, I now have another choice to make but, if I had my time again, I would have radiotherapy before any kind of reconstruction. Good luck.
@kittens I feel exactly the same. Just returned from pre surgery appointment and been offered a cancellation 23rd!! Find out for sure this afternoon. I am full of anxiety and completely overwhelmed. I have 2.6cm of highgrade DCIS and a “small focus of ILC Grade 2” My pathology report says I am HER2 Low. ER positive (high) but PR negative. Does this mean the Lazatol will be less likely to work?
They are removing a 4cm area. Did you all buy Codeine to take after. Also did you get local for the wire part first? So much to take in… radioactive sugar injection day before?! Am so overwhelmed.. any help and advice from anyone on the above to calm me please..
xx