Another night of not being able to sleep. Lots of weeping. I was diagnosed with invasive lobular breast cancer back in July. At first it was thought I’d be able to have a lumpectomy, but after an mri and ultrasound, the tumour was larger than first thought. I had a mastectomy (left side) on Sept 2nd. The only reconstruction offered in my area of the country is implant. I was very reluctant, but surgeon told me and my husband I wouldn’t get diep on nhs as it’s too expensive, even if I could find someone willing to do that surgery - he said that most nhs centres have stopped offering it. Apart from my reluctance to have a foreign object inside my body, I had read that there are very high rates of post operative infection with implants. In the end, the surgeon reassured us that the chances of infection with his track record are low and have been limited to smokers. I decided to go ahead, as I didn’t want a flat mastectomy site. This also involved going through a reduction on the right side, as I had quite large breasts - 40DD. Post surgery, I got an infection (I am not a smoker). After weeks of antibiotics and a debridement procedure in theatre, I was admitted as an emergency two and a half weeks ago. I had to wait almost 48 hours for a spare theatre slot. I ended up losing the implant - the mastectomy site is awful and I haven’t found it easy emotionally. Added to that, my right breast is so small now my cup size is an A - I haven’t been that small since I was 11 yrs old - an my nipple/areola is half the size it was. I wasn’t expecting that. And of course there is the (extensive) scarring and loss of sensation - I have none at all in some areas, including the nipple. I had no idea I would be so small, or that the sensitivity loss would be so drastic. I feel though I may as well have had a double mastectomy. I am now waiting for radiotherapy to start - in the next couple of weeks. I have an appointment to see the surgeon again at the end of next April. Not only am I numb emotionally from the cancer diagnosis, I feel disgusting, mutilated. The breast care nurse could see how distressed I have become and has referred me for counselling. I am now on a waiting list for an assessment appointment. I have had some difficult times in my life, but I don’t think I have ever felt worse than this. I am ashamed that I have no hope. I don’t know what to do. My husband is at a loss, too.
Hello Jubelu,
I just wanted to say hello and say so sorry to hear that you are going through such a traumatic time.
To cut a long story short, my situation also changed from mastectomy to lumpectomy a couple of times and I also had a failed reconstruction (not with an implant).
It takes time to process it all, especially if you are still going through active treatment. I use to refer to my surgery side as a nuclear bomb site! I still can get upset about it all now, about the extra treatment and complications added to an already long, drawn out treatment process. At times, I will still berate myself for bothering with recon in the first place etc even though it is 2 years after surgery. I just think this is ok and, for want of a better word, “normal” considering the situation.
Taken as a whole, I found it a a traumatic experience. I can still picture the leeches on my wounds. I am not at the stage yet where I may proudly display my scars and speak of such things using the language of war whilst playing a victory march. That is not me yet I feel a little envious of those that do.
However, time has healed some of the physical and emotional scars. I certainly don’t think about it as much these days. I am quite comfortable wearing a prosthesis (I am quite small chested too and prefer to be).
It takes time to process and come to terms with our experiences. Do not be so hard on yourself. In my opinion it is very normal to “grieve” in this way. I am glad you have counselling available to you. I hope you can access this soon so you have a safe space to explore your feelings. You say your husband is at a loss too. Is that about his own feelings or about not being sure how ti support you? You may want to consider what you want from him at the moment? Maybe that is to be reassurred of his continuing love and support irrespective of your current appearance.
Be kind to yourself Jubelu,
Chick ? x
Dear Jubelu
My situation is, in many ways, similar to yours. Diagnosed in July, tried pushing for lumpectomy but small size of breast versus large mass meant I had to go for mastectomy. Developed necrosis of nipple and area at incision. Nipple is hanging in there (shrunken in size but just about there). But last week, it became clear that the skin at incision has given up completely. Monday was the first date they could get for surgery to remove the expander that was in there and cut out the rotting skin (and believe me it really does look like it’s rotting). Meanwhile the skin rot progresses steadily by the day.
I completely understand all your feelings of despair and self-disgust, and shock of loosing all sensation. I am not sure what words of comfort I can offer that someone else has not already, except to tell you that you’re not alone out there.
Xxx hsk