Help convincing surgeon

[Corfu7]

When I was officially diagnosed in sept 2019 with breast cancer ER negative HER2 positive and positive nodes. I had 4 months neojuvent chemo then due to lockdown had left breast and lymph nodes removed. This followed by a further 10 months of chemo and 20 sessions of radiotherapy. I know they removed the worst affected breast but I still had some small dcis in right breast. Which have shrunk but not disappeared. It was always discussed I wanted full mastectomy. Now I’m finding that every time I try to discuss wanting my other breast removed nobody is listening apart from my gp who agrees with me. I now have at my request a chance to speak to my breast surgeon. Please has anyone been in this predicament. Can anyone give me advice. I constantly live in what if? It does stress me out.

[RWGR]

Hi Corfu, you were diagnosed the same time as I was. Mine is ER and PR +, Her2-.

I was proposing double mastectomy too although my right was clear as the chance of the cancer in the second breast became higher.

I was turned down as it was seen as over treatment.

In your case, Her2+ cancer is prone to come back quicker if it does happen plus the fact you have already DCIS.

I met a lady when I was on active treatment who was Her2+ and had relapse on the other breast just on 5 years.

I think you can do an internet search of case studies on Her2+ relapse on the opposite breast and present your findings to your surgeon.

[SueandEmber]

Hello Corfu7

Firstly, I am so sorry to hear you have continuing problems. RWGR is right that HER2+ is prone to return. I am proof of that! I've been 'clear' for 5 years and now it has appeared in two lymph nodes in my chest. I am awaiting imminent surgery to hopefully have them removed. Anyway, re your problem. I also wanted both my breasts removed even though I only had cancer in one. My cancer had also gone into the lymph nodes under my arm, under my clavicle and one in my neck. I said at the time I was first diagnosed that when it came to it, I wanted both breasts removed. I repeated that when it came to surgery. With much fighting, including having to obtain a letter from a medically qualified friend who has known me for years and vouched for my common sense and also because I had had 6 months to think about it and hadn't changed my mind, they did eventually agree. It was a terribly stressful time. I was very determined and I think you will need to be. Would your GP write a letter of support? Perhaps you know someone else in the medical profession who would support you? In my case I gather my surgeon and my Breast Care Nurse really put their jobs on the line for me because their senior was so against it. I gather some ladies have had a double mastectomy and deeply regretted it and then tried to blame the hospital so I can understand why they are so wary. My surgery was described as risk reducing. I'm just disappointed that the wretched cancer has still come back somewhere else! Good luck!

[Corfu7 in reply to SueandEmber]

Thank you for your reply. I have constantly asked/reiterated since 17 September 2019 for bilateral mastectomy. I had my left mastectomy done as a day patient during lockdown in April 2020. I was told due to COVID they would only do one breast and lymph nodes removed as I wasn’t able to stay in hospital due to virus. Every time I’ve had a follow up via phone call or face to face I have asked repeatedly. My gp had wrote to consultant In March as he is not happy that I’m getting anywhere fast and my mental health has suffered due to it. I realise last year with COVID was not the best time to have BC. I had hardly any interaction with services as I was isolating except going for chemo or other appointments that required going to hospital. I never hit it off with my Macmillan nurse. So she hasn’t been at all helpful. So I had to phone several times my consultants secretary to get this appointment. Obviously due to lockdown I have been unable to attend not invited to any psych appointments. I’m at a loss I mentally feel drained constantly fighting an uphill battle. However if becoming a pest or damn annoying that is what I will do.

I’m so sorry to read of your reoccurrence but I’m sure you have a good team behind you. I wish you everything positive health wise xx Jax xx

[Rozmikesell68]

I was diagnosed August 2019 And I also wanted a double mastectomy but my surgeons talked me out of it. I was so upset when I got home from that consultation because I went there thinking I was getting a double mastectomy and they talked me right out of it. It was very frustrating! In my case I only had two tumors in my left breast and my right breast was healthy, but I really wanted them both off so I wouldn’t have the fear of the other one getting cancer. For me I am glad I only had my left breast removed… I had a lot of complications and was on a wound vac for 70 days! I personally know if I had a double Mastectomy I would have not been able to take care of myself at all for a long time. However, it’s your body and if you want a double mastectomy you should be able to have a double mastectomy. You need to talk to your doctor and if he isn’t hearing you maybe you should talk to another doctor. Good luck on your journey and Godspeed on your healing! ❤️

[Corfu7 in reply to Rozmikesell68]

Did you have the blue pressure vac? Where you done as a day patient? Did you have chemo and radiation?

[Rozmikesell68 in reply to Corfu7]

No I had a wound vac that had to be changed every 2-3 days…a machine attached to me around the clock ! My breast opened up from lack of circulation about two weeks after my mastectomy and I had a 4 cm x 4 cm wound across my breast that they had reconstructed. I also was very lucky because my cancer was wasn’t in my lymph nodes And with a Mastectomy I avoided having chemo and radiation. I’m one of the lucky ones!I had my mastectomy four months before the pandemic started and I had it at the hospital and had to stay the night for two nights. They had to check for a pulse to see if my blood supply from my upper chest was still flowing and it was flowing fine until about a 2 weeks into it And then it stopped and the tissue started to die and my breast reconstruction split open and that’s where the wound VAC started for 70 days.

[Corfu7 in reply to Rozmikesell68]

Sorrry that sounds rude of me to ask. Apologies xx

[Rozmikesell68 in reply to Corfu7]

Not at all…your questions were fine! Everyone’s journey is different so it’s nice to get feedback.

[Lainey66]

Hello, I was diagnosed in 2015 with Triple Negative Breast Cancer. I knew immediately that If a mastectomy was needed I wanted both breasts removed. I let my Surgical Oncology Team know this from day 1. Like you, I started with the Chemo at the end of the October of that year. By Dec. It was noted that the cancer was growing rather than reducing so surgery was booked for 5 Jan 2016. I made all my feelings known but the policy was not to remove healthy tissue. I was not happy. I had researched Breast cancer from the moment of my diagnosis, filing all my research into a folder. This research included statistics of its reoccurance along with survival rates. I researched my legal rights. It turned out that because we are in the EU we can request the surgery be carried out in any centre of excellence within the EU at the cost of the hospital refusing to carry out the surgery. Now, you have to be able to show that statistically this surgery is in your best interest physically and mentally. I had a letter of support from my GP. My surgeon was very reluctant and wanted me to see a psychiatrist 🙄 Naturally I refused stating I knew my own mind. That for me, having one breast would be far more psychologically damaging that having no breasts. I also had my research backing up my argument that TNBC has a far higher percentage of coming back in the remaining breast. When I said that if he was not willing to perform this surgery, he would not be performing any surgery at all as I would go else where he saw how determined I was. You need to do research, collate your evidence, keep a copy for you and have a file prepared for him to take away and read. Have the support of your GP. Research your legal rights, have it all in writing. The surgeons have to be 100% certain that this is in both your physical and mental best interest. They have to ensure that rash decisions are not being made and they will not fall victims to legal actions for not persuading you not to have both breasts removed. They have to be 100% sure that this is actually what you want and you won't have regrets that could lead to mental health issues at a later date. They need to know, without doubt, that you understand that this surgery is irreversable. Now, am I happy with my decision? Yes I am, 100%. I live a 'flat life'. Buying clothing can be difficult, but it is not something that bothers me. I have had a large chest tattoo that covers my scarring, and I am alive. I am 6 years post diagnosis and 5 years post treatment. I have never looked back. At the end of the day, my breasts were killing me so they had to go. Good luck with being heard. It can be quite a battle. ❤

[Rozmikesell68 in reply to Lainey66]

Here in the US you can get a double mastectomy if you really want it. My doctor just had all the right things to say as to why I shouldn’t get a double and I happen to listen to them and I’m grateful that I did. However everybody’s journey is different and you have to follow your heart not somebody else’s. Good luck🥰

[juleskate]

I had to fight really hard to get a double mastectomy even when I had family history etc. I think you need to ask for a second opinion. You may need to research to find a surgeon who is more likely to agree with your decision. It makes me so angry, it should be YOUR decision. I lost a cousin who would probably not have died if she had double mastectomy. My cancer was Her2 also.

[juleskate]

You may even have to consider going private, I was willing to sell all I had to get that other mastectomy done but did not have to in the end.