The waiting

[ruth1]

Ihtak is the pathology DCIS? This means a non invasive form of cancer cells which have a 1 in 2 chance of turning into invasive cancer. This combined with your family history might give you a way to have surgical mastectomy on the public system and reconstruction also. Its worth making enquiries with these facts. I have no clue about this but asking about this might give you something. I think you need to see a specialist breast surgeon to discuss your options. Implants could be your starting point with a tram or diep procedure later on - implants often need to be replaced after about 10 yrs although some keep them longer. If I was in your position I would have the double mastectomy.

[The new girl]

hi intak,that is such an unusual outcome,meaning I have not heard of that result before. Sorry you have so many desisions ahead of you,but I agree if it were me I would want to have a mastectomy as well,reconstruction sounds expensive if you have it straight away but waiting is ok if it mean no out of pocket expense.
Wishing you all the best
Rosa

[Ihtak]

The original waiting finished, finally, on Thursday.
Good news: I don't currently have cancer.
Not as good: I have a sizable area of cells which have changed and I now have a 1 in 2 chance of it developing into BC within 2 years. (Dr did write down what it was called, but I can't remember just now.) This area was only picked up by the MRI due to the blood flow, not the ultrasounds and mammogram, then confirmed by the core biopsies.
I was given a range of options from here. I have checked with some other specialists and they agree, these are my options.
1. 6 monthly checks with ultrasound and mammogram. (I was told they would normally use the MRI, but given I had such a bad reaction to the dye, they don't want me to ever have that again.) Given the ultrasound and mammogram did not pick this up earlier, it is not something I have great confidence in. Plus, the fear and worry we have had for the last 2 months, every six months.
2. Do 1. plus have tamoxifen for 5 years. (Hmmm .... menopausal symptoms but still keeping having periods, plus nausea, headaches and PMS. Increased risk of uterine cancer, which they keep an eye on partially by getting the woman to report any bleeding outside the normal cycle, when mine is anything from 13 to 56 days normally? No thanks.)
3. lumpectomy and 1. and/or 2.
4. Bilateral mastectomy with immediate reconstruction. As there is currently no cancer, they won't need to dig around in my lymph nodes and I won't have to worry about radiation delaying the reconstruction. I get to keep my skin and nipples, although they will core them out. I will loose the sensation from the nerves in the breast, and so most of that from the nipples but should keep the sensation in the skin. There are the usual surgery risks of necrosis, infection, rejection and death. This surgery will reduce the risk down to 1% for my entire lifetime.
We had massive discussions over the weekend. My 14 year old was included. As far as the boys are concerned, it's a no-brainer: Mastectomy is the only way. My hubby says it is the best of a bad bunch of options. I didn't let them know my opinion until after they had given theirs, but I agree with them.
I am seeing the reconstruction surgeon on Thursday. Whilst I would far prefer the TRAM or similar, using my own tissue, I can't see us being able to afford it. That leaves me with the implants. Even those will be a definite struggle financially but I don't want to wait in the public hospital system as I know I will be the lowest priority for both removal and replacement.

[schoolteacher]

The waiting is the worst part of this experience. I remember wanting a mastectomy to rid myself of the cancer beast.
It is important that you have all the test results to infirm decisions.knowledge is power.
If you do have the surgery, it is not painful. The node removal was the sorest part for me

[jezza]

Just wanted to say that you are not alone and you can say anything here. I will answer in more detail later but as you can see from my profile I opted for a propylactic mastectomy after having a mastectomy on the other breast due to a BC diagnosis.

As for genetic testing, as Ruth says it can sometimes be inconclusive. I was reading an article in Saturday's "Good Weekend" (The Age mag.) about a lady with a very extensive family history of cancer, including some relatives who had tested positive for the BRCA2 gene mutation. She had the test AFTER she was diagnosed with breast cancer, but did not have the BC mutation herself. The counsellor told her that some genes have not been successfully mapped yet. Very frustrating but science has only come so far.

Waiting is definitely the pits! We have all been there.

jezza xx

[ruth1]

Ihtak the waiting is the pits but there is no way out of it. I think you cant make any decisions until you get the results of the biopsy. As for genetic testing - you need to see a genetic Counsellor - Familial Cancer Clinic attached to the cancer centre in major hospitals. It can be done without cost if there is sufficient history and current risk. The only thing with it - like any test it can return an inconclusive result - this is getting way to far in front at the moment I think - you need to see the test results and go from there. If there is no cause for alarm at this point then make an apptm to see the Counsellor in the familial cancer clinic and they will assess your family disease history because it depends on the age your relatives were diagnosed. In the meantime try and find out from family any of the history so you have it ready.

Having a double mastectomy isn't too hard and depending on your particular case - you can have a nipple sparing surgery which is what I did. There is much to be researched but you have to wait for the test results.

Wishing you the best result - please let us know. Try and keep yourself busy until the results are available.

[The new girl]

hi Intak, welcome to the forum but sorry you have to join us . Yes the waiting if the worse.
sending you hugs for feeling so alone and without family support,this is a great place to come ask any questions and get understanding from people who have been through it before you, my diagnosis was almost 4 years ago but I stay on the forum to offer any support to new people unfortunately the forum can be very quiet at times but just keep checking in because I am sure you will get some more replies.
Rosa

[Ihtak]

Warning – this is a long post. I have no other place I can express these thoughts, so please forgive me.
I am sure most, if not all, have been where I am now – the waiting. I know some of the details will be different, but the waiting is the same. I have been told I have to be patient, but right now, I am too scared for patience to be very effective.
So here’s the story:
I am 44, married to a wonderful man, with 2 gorgeous boys, 24 & 14. (There were 5 angel babies in between.) I am not close to my mother or sisters, due to an abusive childhood. Even now, if anything occurs, they find a way to make it about them. I have only one close female friend, as I have difficulty trusting others. (She is backing away at the moment.) Thankfully, my amazing hubby and sons are the way they are – they make life worth living. My older son knows what is going on, but he is very focussed on his upcoming wedding, however we have not told the 14 year old and only will if the result is the one we don’t want. (No sense worrying him unnecessarily, particularly with exams at school.)
I am fairly fit, having lost almost 50kg so far, and love participating in athletics, particularly sprints and hammer throw. I have another 10kg left to loose and then I will be half my previous weight.
A couple of months ago, I found a new lump. As my boobs are naturally lumpy, varying greatly depending on where I am in my cycle, I did not push the panic button. I also know the weight loss means I will feel things which were previously hidden, so no panic. I waited a couple of months, making sure it was not vanishing, before going to the GP. He could not feel anything, but he respects me and my knowledge of my body and referred me for a mammogram and ultrasound.
The mammogram and ultrasound were done fairly quickly. Then, a few days later, I got the call from the doctor’s receptionist saying I needed to come in, but she refused to make an appointment until almost 2 weeks later! 2 days after that call, I was called again. The doctor was insisting I come in earlier.
According to their results, the lump I found was yet another cyst, but there was 2 areas of calcium deposits, one of which was concerning. I was referred to a breast specialist/surgeon.
A week later, I saw her. Based on the limited information I knew of my family history, plus the mammogram, I was referred for an MRI and genetic screening.
After a massive stuff around by one MRI provider, who refused to book me in until at least July, “possibly September or October,” I got in to see another provider within a week and thankfully my hubby drove me, as I had a reaction to the dye. Luckily this occurred right at the end of the scanning, as they got the pictures needed. Unfortunately, it means I will only be able to have that sort of scan in the future if it is a life or death issue, so not part of the normal scanning.
Another week to see the surgeon for the results – the calcium was fine, but there was another area (right where I said the lump was from the beginning!) which was a concern and she wanted me to have a core biopsy. Apparently, it was only found due to the blood flow and the mammogram and ultrasound did not see it. I had been prepared for positive (negative) and negative (positive) results. I was not prepared for “that bit is fine but there is another area of concern.” She told me I was now rated as a 4-5.
In the meantime, I was doing the research about the family history for the epic questionnaire for the genetic screening. Turns out to be worse than I knew. I was aware of my 2 sisters (breasts) and maternal aunt (ovaries), but I was not aware of my grandmother, my grandmother’s grandmother and my grandmother’s great aunt. (Well, to be fair, the last two we are just working on the assumption that “kanker of the breast” and “breast abscess” were cancer.) These are all on the maternal line. I also found out the earliest I am likely to have an appointment for the screening is November, more likely December or February, as that is when they are making appointments for now.
It was 2 weeks before the biopsy was done. The lady doing the ultrasound could only find the cysts, two of whom I refer to as “the twins.” The doctor decided to take a fine needle sample from each of the twins, as well as another cyst, and to aspirate all three. He commented it was really good as they all diminished when aspirated and how it was interesting that they all had such different fluids in them. (He chuckled when I said that must mean the twins are fraternal.)
He commented that none of those were in the area indicated by the MRI, nor were they a similar size, so he wanted to have another look before he finished. Just as he was about to stop, “what was that?” The ultrasound woman said she did not see anything. He insisted he did, took over the operation of the ultrasound and showed her what he was looking at.
“It might just be a shadow,” she said, suggesting he turn the head the other direction and to heal and toe it. Turning it the other way, this lump become more obvious. It was distinctly different than the cysts, missing the “void” appearance they had.
“I want a core of that!” he exclaimed, a little too enthusiastically for my liking. So after a fair amount of digging around, got to the place he wanted and took 3 samples.
So now, I have to wait until next Thursday to get the results of that test. I feel like I am on a rollercoaster with no way to get off.
Whilst all this has been going on, I have been seriously considering prophylactic mastectomy, with immediate reconstruction, considering what I now know about the MRI dye, the obvious fallibility of mammograms and ultrasounds and my family history. There is also the issue with my breasts being really lumpy, so it being difficult to feel changes, so the risk of something not being found until it is too late. Even if this test comes back clear, I can’t shake the feeling I have time bombs stuck to my chest. I have always loved my boobs, particularly my sensitive nipples. Sure, after breastfeeding my boys for 18 months and 21 months respectively, they are a little (lot) droopier than they used to be and the stretchmarks area scattered over them like spider webs, but they are still a great size, and bras can more than overcome the sags. But now, it is all I want to do to get rid of these poison sacks.
If I imagine having that done, I mostly experience relief, with some expectation of pain (like my caesareans but a bit further north) and some grief for my nipples. I don’t let myself do that too much, particularly as my hubby wants to just get through each bit step by step, but he also does not understand how I am feeling. I know he is scared too, although he denies it, and I can feel it in the way he shuts down the conversation when I try to talk about the different possibilities. We have been together since we were 16 (schoolyard sweetheats!) and this is the first time I have felt this distance from him. He also could not understand how I could feel both saddened and relieved when the doctor found the lump he biopsied.
I really don’t know if the genetic testing is worth it. I have been told it is expensive and, really, it won’t change the course of treatment, if this does turn out to be bad, as that would be tailored to the result. I wonder if you have to have the screening, to prove the “need” for the prophylactic mastectomy, in order to have Medicare come to the party, or if the family history is enough. Does anyone know? I can’t afford to have it done if it is only considered cosmetic surgery, especially as the health insurance does not cover cosmetic surgery.
I would also prefer the operation be done sooner rather than later. As long as these are sitting there, the thought of them festering is eating at me. There is also the athletics, as shallow as that sounds. The season starts in October and I don’t want to miss even a week of it. (At the moment, it is only the running which is getting me through the waiting.)
I feel so very alone.