second primary breast cancer

[Melly7474]

Just been diagnosed again. First diagnosis was in 2016 in right breast, now it's back in other breast.

Anyone else had this ?

[PeepBo]

Hello Melly. I had the same thing but with a slightly longer time scale. The first in 2001 and the second 15 years later. I am now discharged from hospital follow ups and off medication. I was reassured by the consultants at the hospital that the second was a primary and had the best of care. If you are concerned please do speak to your consultants and/or Macmillan nurse. Wishing you the best of luck and if I can help will be glad to do so.

[Melly7474 in reply to PeepBo]

HiThank you for your reply. Was yours the same as the first?

Mine is oestrogen positive this time and it was last time. I'm still on medication to suppress my oestrogen and shut my ovaries down so that's why I'm confused.

Thanks again for your reassurance

X

[PeepBo in reply to Melly7474]

Yes both were oestrogen receptive. The only difference was the second was an extremely rare variant which involved many more tests and scans but ultimately this was reassuring and hasn't affected the outcome. I was referred for genetic profiling because it was the 2nd time and this may be suggested for you. Good luck on your journey.

[Melly7474 in reply to PeepBo]

Thank you so much for your information and reassurance.X

[anrean]

Hi Melly Yes, it happens. I just got the call 10 minutes ago that I have the 3rd breast cancer, all of them primary. Don't know much yet, but will get the skinny on it August 29. This is my 6th primary cancer overall - Liver, right breast, ovarian, left breast, lung and now right breast again. It is what it is, and my job is to accept it and move forward.

[Melly7474 in reply to anrean]

I'm sorry to hear your news. May I ask, what is the skinny? X

[anrean in reply to Melly7474]

Hi The skinny is an old fashioned way of saying information. I don't know much until then.

[Melly7474 in reply to anrean]

Oh ok, thank you. What is your age? If you don't mind me asking? X

[anrean in reply to Melly7474]

I turned 64 on August 17. Been fighting cancers - all of them primary - since 2002.

[Melly7474 in reply to anrean]

Oh I'm sorry to hear that.

[anrean in reply to Melly7474]

Hi Melly,If you would like to talk, you can feel free to message me. I will not be sad - I am 100% accepting what is happening, and would be willing to talk to you to reassure you about your situation!!

[Melly7474 in reply to anrean]

You are so kind, thank you. X

[DJK99 in reply to anrean]

So sorry to hear that anrean. x

[DJK99]

Hello. So sorry to hear this. I know it's a bit of a shock, especially the second time around. It certainly was for me. Sorry have only just seen your post.

I am 59.5yrs old now, but I have to say I had a lumpectomy with the usual few lymph glands removal in March 2019 (first cancer lump), then a recurrence in August 2021 so had a full on radical mastectomy (scar from middle of my chest to underarm as 3 new lumps were right near mid chest), then this year in May another recurrence just above the mastectomy line which was a shocker, so had a lumpectomy in May. It's just the way things are for some of us.. the oncologist said this time "well, we didn't think it was a problematic case, but it has now shown it's true colours") however I couldn't manage the Tamoxifen in 2019 for longer than a few months and then even halved dosage, as have a lot of other health conditions and it really left me unable to function at all. It potentiated my neutropenia (low white blood cells) too which was not a good situation as left me open to infection badly.

And when they wanted me on Letrozole my DEXA scan end of last year showed I was -0.5% off osteoporosis in my spine and hip (like I didn't already know as have so much daily pain/stenosis etc with inflammatory arthritis, bone remodelling in hands and feet and everywhere and lupus and sjogrens.. and apparently bilateral coxa valga which explains so much) so I didn't want to start that as, apart from the risk of fractures and worsening pain etc it also gives the same level of exhaustion for people like me with lupus, and life is very difficult already.

I live alone, no partner or family (brother literally just passed at 62 with Parkinson's) and no kids... I just can't ask friends to do anything, not my bag.. and I'm very independent... so when the very strong recommendation came up fro radiotherapy this time (had said have it first time around of course but was just unable to - dealing with so much other health stuff) this and that it would need to be 9inches x 5 inches, I spent weeks and weeks deciding, as they said it would probably be very problematic for me (which is why they realised they would have, but can't, offered chemo - I have neutropenia and hypocomplementemia so v bad immune system and the fall out would be too dreadful on my system).

So. Have you decided what to do? I'm happy to talk if you want to - although can see above a lovely person has offered that too... I'm hoping you're receiving support from us here, your medical teams, the macmillan nurses (mine was very frank) and your friends and family. I am happy to help in any way I can.... Or just listen.

Sending hugs and strength.. D x

[Melly7474 in reply to DJK99]

HiThank you for your kind words.

I'm awaiting CT scan (Friday) then meeting with my surgeon.

I'm considering double mastectomy but I'll see what they recommend.

Just want the treatment over with.

Xx

[DJK99 in reply to Melly7474]

OK. Goodness... have they suggested bilateral mastectomy?

Yes, I had three of those.. CT scans I mean, and nothing came up each time to show had spread - but a lot of other things did come up. I have everything crossed for you it is clear... of course.

I have to say this....................... please don't anyone be upset with me, but.... I found research after having my mastectomy that it doesn't change anything if you have radiotherapy after that, and I think, even having mastectomy doesn't, in the long run ie prognosis-wise. I can send the links if you are interested.... you gotta be as up on all of this as you possibly can to make the right decisions for you eh? If you have kids, and if I had kids, I would have said do it ALL, give me whatever... but it's not all good for us, and not all necessary.

Do you want the research I found? It's very up to date and of course, B MJ type.

x

[Melly7474 in reply to DJK99]

Yes please!No, they haven't suggested BM but I was just thinking, get them off!! Had it in both now.

But research shows no difference than having radiotherapy?

I'd love to read this.

Thank you very much

X

[DJK99 in reply to Melly7474]

Already sent. Hugs... x

[DJK99]

I'm going to send this anyway... as I have to go and do something...and don't want you to wait.

I found this AFTER have mastectomy and AFTER making my decision not to have the mother load of radiotherapy. I'm not some radical nutter, I'm someone with a hell of a lot of other health conditions that mean I had to retire early on ill health grounds, and also someone without a family, and a good support network nearby... so I hope it's understandable, all my decisions... as I said, if I had a family, kids, a partner etc... well, I probably would have got for the radiotherapy...

"In the 700 women with no cancer in the lymph nodes, radiation after mastectomy didn’t reduce the risk of recurrence and didn’t improve survival rates."

breastcancer.org/research-n...

Women who had breast-conserving surgery had an 83.2 percent survival rate at 10 years, compared with 81.2 percent for those who had a double mastectomy. That meant that women who had breast-conserving surgery, also known as lumpectomy, did better and also avoided the risks of major surgery and loss of a healthy breast.

The study also looked at women who had a single mastectomy, which was the least popular option. They fared worse, with a 79.9 percent survival rate, enough to be statistically significant.

npr.org/sections/health-sho...

Twenty-five-year follow-up of a randomized trial comparing radical mastectomy, total mastectomy, and total mastectomy followed by irradiation

pubmed.ncbi.nlm.nih.gov/121...

Hugs.... x

[Melly7474 in reply to DJK99]

Thank you x

[DJK99]

Very welcome.... read up, digest... inform yourself... Don't panic xxxx

[twiceshy2]

Hello Melly7474 - I also had breast cancer in 2016 and was diagnosed again in May of this year - same breast. The doctors felt good about just doing another lumpectomy so that is what I did. I am past the second surgery and radiation and feeling great. I do have to start taking Letrozole in the next week and to be honest I am dreading it so bad after reading all the side affects. I choose not to take anything after the first time but all my doctors strongly suggest it this time. Prayers all goes well with you also.