Treatment options for recurrence

Hi Melinda,

Yes, these short straws are a bugger aren't they.  I have ended up saying to myself - oh, why am I surprised - another thing that is not quite 'the usual'  if there is such a thing.  I do, of course, think myself as being very lucky compared to some though.  Even with this recurrence - it could have been so much worse.

I went to the oncologist yesterday and she was very good again with her view on the situation.  When we talked again about the lack of data on the statistics of those who choose monitoring for recurrence she did say again that 'most' women go with the mastectomy option and that is partly why they don't have more data.  She said that some women who are told the risk is ultra low of having another recurrence still opt for a mastectomy.  In my case - if the recurrence had been bigger then she would possibly have suggested chemo but because they removed it when it was small with clear margins then the added benefit of chemo is only small so not worth going through it.

The oncologist also told me that they could drain the seroma but it would refill again until the internal healing had happened which can take a long time on radiated tissue.  So if it causes problems I will probably have it drained - otherwise I am to watch for any signs of infection and see how it goes.

For now - I am going to do with the monitoring and Arimidex and reassess over the next few months.  I was originally given the impression that if I had a mastectomy I would not need to take the Arimidex but that is not the case.  I would need to take Arimidex anyway - to help prevent recurrence in the area and elsewhere. So things could change at any time but just to have a small break from it all would be good - have some things to get done and a little bit of time would be good.

It sounds like you may have come to a bit of a decision - which is a big step in itself.  Perhaps some time doing a few things that you want to during this monitoring time would also be good for you.  A bit of space.  Hope you are feeling good.

Thanks for chatting.

Cheers, Pauline xx

Hi Lisa,

Thanks for the reply.  I know that the breast care nurses do a great job.  This time around I had a visit from one while I was in hospital overnight but have not been in any other contact with them.

I do have the feeling a bit this time that I am not falling into the box in quite the same way as many others.  Whilst I have been told that it is quite a reasonable option to do monitoring and take Arimidex it also is being said that "most" women go with the mastectomy option for recurrence and that is one of the reasons that there is not a lot a data on those that choose the monitoring path.   

I will give your suggestion some thought.  Thank you again.

Cheers, Pauline

Hi Pauline,

It's Lisa from the Policy Team. I am very sorry that you are having to deal with a recurrence and make these decisions. It is great that you posted on the Online Network. You may have spoken to a breast care nurse already, but if not, it could be helpful to get in touch with your breast care nurse to talk about some of your options and discuss any questions you may have.

Warm regards,
Lisa

Hi Bep,

I am so sorry to hear that after all your pain and efforts to achieve a good result that things are not good.  Is there any further treatment that you can have to help you? It is such a cruel thing to have gone through cancer and it's treatment and then not have things work out well. 

I read so many stories that appear to have good outcomes and also at times women who seem to have so many options open to them but I wonder how many we don't hear about. The options I have to choose from are quite limited compared to some.  I also am hesitant to try for some treatments as it seems that I have had so many complications that others don't appear to have had.  I try to be very positive but I also think I have to look at my track record and perhaps just accept that if I have the mastectomy I have to be prepared to accept that in my case having no reconstruction may in the long run be the best outcome I can achieve.

If I go that way, both of the plastic surgeons I have seen have recommended that I have a reduction on the right side - to help me manage better and be more comfortable physically.  My breast surgeon told me last week that a lot of women don't want to touch the other breast if they have a mastectomy as it can mean loss of sensation in the breast that has reduction.  Neither of the PSs said anything about that even though they told me that the reconstructed breast would not have feeling so I don't know if it is always the outcome.  Also I know someone who had reduction years ago and she said she had no loss of feeling.  And then - does it really matter - if I am more physical comfortable.

Anyway, I have the oncologist appointment on Wednesday and I am interested to hear what she has to say about things and what her opinion on the new little extra complication of the seroma is.

Thanks for sharing Bep and I hope with a little bit more times some things might improve for you.  Good thoughts going your way.  Cheers, Pauline xxx

Hi again, 

 I'm doing ok, my last breast operation was 7 weeks ago and was extremely painful. Just rather sad at the outcome, always hoping for a miracle but reality is so confronting. Only a slight improvement unfortunately and still asymmetric with my right breast 3 cup sizes bigger then the left and 2 inches higher. The tram flap was placed too high on my chest compared to my natural one, so being even is impossible.  It just seems impossible to achieve what other women have done . I hope you are well and get all the information you need. Ultimately the decision is yours as its your body . Wishing you the best and sending hugs your way . Let me know how you get on if you don't mind thanks. ??????xx Bep

Hi Pauline,

I agree, I think you are absolutely right! in our cases with the tumor removed, the urgency of mastectomy is alleviated so we can sit and wait or elect Mastectomy straight away. I find that super odd too, how are there not statistics for women with recurrence and choose to be monitored. I know my Oncologist said he has quite a few patients doing just that. 

Yes same thing I was told, no guarantee and I too have drawn the short straw in the percentage stakes. Seems odd to me also that it came back in my scar, and I was so mad to have had radiation and seems it did nothing? and the other alarming thing was Tamoxifen for 4yrs? and that did nothing? YIKES!!! 

I know I am absolutely clear had all scans etc., and I feel GREAT!!! and there is no crystal ball or guarantee uuugh yes exactly!! we can only do what is right in front of us. So I do feel Mastectomy now then I can rest knowing there was nothing more I could have done. Im 48yo should be having the time of my life but been a difficult 4yrs. After Surgery I plan on making it the best life I can have...and focusing on old age!!! 

Happy to chat anytime Pauline, I agree it does help with support here, ladies going through the same things. Its a blessing!! 

Hugs Melinda xo

Hi Melinda,

Yes, I agree, it sounds like you have been told similar to me about the recommended treatment and recurrence.  Perhaps a lot of women don't have a lumpectomy for the recurrence to confirm the diagnosis of recurrent invasive breast cancer.  If they know from the biopsy for sure then perhaps their choice is lumpectomy or mastectomy and they go for the mastectomy.  I think perhaps that with our cases, it may be because they have removed the recurrent tumor with the lumpectomy the urgency for a mastectomy is alleviated.  

I do find it odd that they have so many statistics about risk of recurrence from a first time breast cancer but when I asked about statistics on further recurrence risk or risk of spread to other parts of the body I was told they don't have much data after a recurrence - especially for women who don't have a mastectomy and choose monitoring and drugs.  The percentages I was given for risk were the same as they use for first time.  That doesn't sound accurate to me seeing as having had it twice must change the risk percentages.  Hope you understand what I mean - it sounds a bit of a muddle.

I really feel for you with having had chemo and I was lucky.  I think that if I had that I would be more thinking like you that you don't want to go through it again.  I already feel quite a bit like that with these odd complications that I seem to get.  In the past also I was given pretty good odds of things happening - like 10% - and I have drawn the short straw on more than one occasion with the odds so it doesn't really make me feel too confident when I am given what sounds like pretty good risk percentages.

It adds to the mix when they say that having a mastectomy reduces the risk of recurrence in the breast of course but it does not mean it can't return elsewhere.  No crystal balls I guess and we can't expect to docs to have all the answers.  It must be hard for them to not know for sure what is the absolute best.

You asked about the diagnosis from my recurrence - it was recurrent invasive solid papillary carcinoma.  The lumpectomy removed it all with clear margins so that was good news.  I am thinking that I will probably end up having a mastectomy because of the other issues and infections that keep happening as well, but there are no guarantees that these won't continue as some of the problem seems to be partly due to the past radiation treatment and the damage to the tissue that it leaves.  I guess there are risks with everything and we can only choose what we feel right with at the time.

I hope you also have some clarity soon.  Thanks for responding - it does help to not feel quite so alone about which path to take.  

Cheers, Pauline xx

Hi Pauline,

From what Ive learned is, their go to procedure would be to recommend a Mastectomy, that is purely based on because its a 'recurrence' they say its your choice to be monitored at this stage, as they got it all in a lumpectomy so currently sounds like me are not in immediate danger. My Oncologist said most women with a recurrence elect Mastectomy immediately for risk of a further recurrence...there are however others who choose to be monitored to see how they go with either Arimidex or Tamoxifen or similar. This is why I think they say the choice so far is yours. So good you havent had to have Chemo, my predicament is, I honestly dont think I could face it again, so only leaves me a Mastectomy in terms of control and eradicating it once and for all. When I look at all the options, it is the only option that makes any sense and yet it doesnt make the decision any easier. 

What was your diagnosis? from your recurrence? 

Melinda xo

Hi Tulips,

Thanks for your reply.  You seem to be in a good place mentally with your decision on treatment.  I agree that we all have to feel we do what is right for us - we are all different.  Some of my family keep asking me - have you decided yet - but what they don't seem to see is that doing what I am doing at present is a form of deciding.  I think they are waiting for me to say that I have decided to have a mastectomy instead of the monitoring and medication path I am currently doing while I research more.  The way things are I can have a mastectomy at any time but once I do that it of course can't be changed.  So until I am sure about it - I will monitor.

I do get a little tired of the extra complications that get thrown in - like the seroma, as I already have been dealing with the lymphodema in the breast and then recurring infections for a long time.  Perhaps nature is really trying to tell me something...... I am going to ask the oncologist her opinion on the seroma and hopefully that will help a bit.

I hope that you are soon healed and feeling well - it sounds like you too have more other health issues going on.  You appear to have a good mental attitude to the hurdles you have come up against.  Best wishes for your continued recovery.

Cheers, Pauline xx

Thanks for your reply.  From what I have read it seems that one of the biggest problems with seromas is that they are prone to infections.  That concerns me because I have already been having recurring infections in that breast for the last few years. 

I am going to discuss it with my oncologist this week so will hear her opinion on whether it ought to be treated.

I have previously had lymphatic massage because I developed lymphedema in my breast after radiation treatment finished for the first occurrence of breast cancer.  Even though it helped at the time I don't think I could have it as present as my breast is quite tender most of the time and the thought of the massage does not sound too inviting.

Hopefully I'll have a bit more info after this week.

Thanks again.

Cheers, Pauline xx