Hello everyone,I have just joined this incredible network as I only just learnt it existed. I was diagnosed end of Oct 2019 with invasive ductal carcinoma, estrogen and progesterone receptor positive, grade 3. I had my strategy informed by my surgeon sorted, that I would complete the 5 month chemo and then have the breast conservation surgery followed by radiation treatment. I was fine and mentally strong progressing through the chemo treatment because I just needed to focus on the here and now and then after all this life would return to normal.Now I have finished the chemo treatment and my surgery is planned for next week and all of a sudden I am second guessing my surgery options. This is in addition to the news that I had recently received that my father has been diagnosed with terminal cancer.All of a sudden I feel nervous and thinking about reoccurrence, what’s in my control, is there a way I can minimise future risk, should I be having a mastectomy instead? I have spoken to my doctors and they say that my strategy is good for partial mastectomy /lumpectomy but ultimately it is my decision. I have a young family and alongside the covid 19 issue happening, could I revisit the full mastectomy later...Has anyone else also experienced this choice, nervousness before surgery and how did you decide? Very grateful for your time and advice.

Hi @Mags44 I am glad to be of any assistance, this journey is complicated and we are expected to make so many important decisions. I would also like to point out that I did not have radiation as both the oncologist and the surgeon indicated that mastectomy healing and reconstruction becomes more difficult after radiation. I was advised to choose between radiation and mastectomy. Have you already had radiation or will you be having that after the surgery.Sorry to hear about your father, just adds another stress element. I lost my mother to cancer a few years back as well.All the best with your surgery, feel free to ask me any further questions.

Dear @Mags44 It’s a lousy time for feeling sure about anything, isn’t it? Very little is normal and in addition to everything else, you have had news of your father’s diagnosis which is additionally upsetting. But you have been firm on your path for several months and have had time to determine how you feel about your medical team. If you are still confident in their guidance and advice, then perhaps there is no new or vital reason to change your course of action. The current climate of uncertainty may be the dominant factor, understandably, rather than any change in your diagnosis or prognosis. At some stage, we all have to accept that there are no absolute guarantees about safety, now perhaps more than ever before. I had a slightly different diagnosis, immediate surgery then chemo. My choice was a partial mastectomy but with strong recommendation to a full mastectomy. That choice still leaves the potential for cancer in the other breast, or somewhere else. Little by little, I think we all learn to live with the reality that nothing is certain, however well we have planned and conducted our lives. Best wishes for next week whatever you decide.

Thank you so much for sharing your wisdom @Afraser you are absolutely right. I think I am trying to control something I possibly can’t. Its also the environment and loved ones that I am thinking about which has influenced my discomfort. Thank you again

Hello @Mags44 it can be a very unsettling time moving into the next phase of treatment. I am so sorry to hear about your fathers recent diagnosis. All in all a very difficult time for you in current COVID 19 circumstances also. Please don’t hesitate to call the BCNA helpline to speak to a cancer nurse for support on 1800 500 258 Take care of you.

Thank you @Riki_BCNA, much appreciated - and will do. To be honest I was so focused on one step at a time I hadn’t thought that much of next stage of treatment, possibly because I loosely knew the plan and that was that. Some great advice. Cheers again,

Uncertainty | BCNA Online Network

15 Replies

Mags44
Member
5 years ago
Thank you @PV123 for your support and positive vibes. The drains sound like an interesting complexity - thanks for that insight. I have to have the radiation after double mastectomy so if I decide to pursue reconstruction that would need to wait for another 6-12months. Not sure what I will do yet. Will check out that group too.
Cheers again ❤️
PV123
Member
5 years ago
Hi @Mags44
Sorry to hear that you have to go through another surgery, are you having reconstruction at the same time.
I found the mastectomy surgery itself quite straightforward, the drains were a bit of a pain. I had one drain removed on day 4 and went home with the other drain that was removed later. I did not have reconstruction maybe because I had never been particularly fond of my boobs, I was pretty small chested to start with. I am also much older than you with adult children.
You do have to make some decisions, please message me if I can help with anything.
There is a special group on breast reconstruction which will have a lot of information and advice.

Sending you positive vibes and lots of hugs.
Mags44
Member
5 years ago
Hello again,

The uncertainty continues, I had my partial mastectomy and sentinel lymph node dissection, and the pathology report came back and there is a bed of 5cm cancer cells in my left breast and one out of three lymph nodes has 2.2mm cancer. So there you go. I chose partial in the end because I agreed with my surgeon that I was still collecting data, and with full mastectomy next Thursday, I am still collecting data but I feel a little more nervous now. I had the 6 months of chemo which reduced the first tumour but obviously it was not completely effective. Nerves nerves nerves.....@pv123

@cazi I hope your surgery went well.
iserbrown
Member
6 years ago
Hi! @Mags44

Here's a couple of links that may help in your research if you haven't seen these already

https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/

https://www.bcna.org.au/understanding-breast-cancer/treatment/breast-reconstruction/

https://www.reclaimyourcurves.org.au/

The whole process is quite daunting however reading reputable sites as shown above will give you some better understanding as you go into appointments and suggested treatments and or surgeries are discussed

Best wishes
Take care
Mags44
Member
6 years ago
Thank you both, @Caz1 and @iserbrown for you advice and information.

@Caz1 thank you for sharing your story and I wish you all the best for next week. It is so hard isn’t. I feel divided and have not slept that well in past few days. I have tried to research and speak to a range of people which has equipped me with some questions I really want to discuss with the surgeon. Like you, just want to read a good book and switch off.

Thanks also to i@iserbrown as I will look at those articles tonight.

Cheers
iserbrown
Member
6 years ago
Hi! @Mags44

Here's a couple of links that may help in your research if you haven't seen these already

https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/

https://www.bcna.org.au/understanding-breast-cancer/treatment/breast-reconstruction/

https://www.reclaimyourcurves.org.au/

The whole process is quite daunting however reading reputable sites as shown above will give you some better understanding as you go into appointments and suggested treatments and or surgeries are discussed

Best wishes
Take care
Caz1
Member
6 years ago
Hi @Mags44 , my surgery is next week too. I’ve just had my recon cancelled but am going ahead with mastectomy. I’m ok with this, don’t want to be in hospital for too long at the moment.
Like you , I had a choice of lumpectomy or mastectomy after neo adjuvant chemo. It was a tough time deciding between the two, I spoke to several doctors and read as much as I could about it, including reading many stories on here. Eventually I went with mastectomy. My gut instincts feel
right with this.
I have had radiation too, before recon, as apparently it’s not ideal to irradiate after recon.
There are so many factors to take in. I feel your pain. It did my head in , and all I wanted to do was read a good book and stop having to make decisions!!!
Also I think it’s normal to be feeling extra jittery at the moment. I certainly am. :/
Cazx
Mags44
Member
6 years ago
Thank you @PV123 for your very kind support. For the partial mastectomy, the radiation is meant to follow. I am glad you raised that as I was not aware of that re impact on mastectomy later. I have a conversation planned with my surgeon tomorrow to assist me clarify my remaining concerns and I will ask him about that too.

i am also very sorry to hear about your mother too, it’s not easy is it.

Thank you again, tremendous support
PV123
Member
6 years ago
Hi @Mags44

I am glad to be of any assistance, this journey is complicated and we are expected to make so many important decisions. I would also like to point out that I did not have radiation as both the oncologist and the surgeon indicated that mastectomy healing and reconstruction becomes more difficult after radiation. I was advised to choose between radiation and mastectomy. Have you already had radiation or will you be having that after the surgery.

Sorry to hear about your father, just adds another stress element. I lost my mother to cancer a few years back as well.

All the best with your surgery, feel free to ask me any further questions.
Mags44
Member
6 years ago
Thank you so much for sharing your experience @PV123 . I feel like I am moving along a similar path and had similar medical team advice. I feel more uncertain as the surgery gets closer. My friend suggested to me perhaps I should get the partial first and if I still feel I need to, see if I can pursue the full mastectomy later. I can’t think of a time I have been more indecisive.

Thank you again