Lumpectomy or mastectomy?

Xyzabc

I have just been diagnosed with invasive carcinoma grade 1,  small (about 1) at 2 0’clock and have to decide pretty quickly whether to have just a lumpectomy or mastectomy. I am terrified of radiotherapy or chemotherapy and terrified of the risk of recurrence. I’m early 40s with young children. I’m leaning towards a mastectomy for those reasons, but surgeons have advised that initial indications suggest a lumpectomy with radiotherapy will be sufficient.  Have spoken to plastic and a mastectomy and reconstruction is possible though obviously major and multiple surgeries. Lumpectomy is simpler but feels like so much risk and unknowns. I don’t know how I’ll make this decision. 

Xyzabc

I do know I’m so lucky to have a choice, and to have options. I’m so grateful that it’s not more advanced and hasn’t spread. I’m just feeling so scared 

jennyss

Dear @Xyzabc,
I'm sure  others will reply to your post with good advice and support. I was very lucky  that back in 2017 a path of lumpectomy, followed by chemo and radiotherapy was presented to me as the best option, with no others options being considered. All good for me! So now I'll just say

from jennyss in Western NSW

Afraser

@Xyzabc

Great that your cancer has been detected early. You may wish to make a list of pros and cons - for example, the incidence of cancer (if any) in your family - to help with your decision. But generally speaking, decisions made in a climate of fear (however understandable) may not ultimately be the best decisions. Your oncologist may not be able to outline next steps accurately until after surgery, but may be able to give you an idea of what is likely. Chemo scares everyone but is not always as bad as is feared. Once you have as much information as possible, you may find the right answer for you easier to
make. Best wishes. 

arpie

@Xyzabc - sorry to see you here, but hope we can help you work thru your concerns. Stage 1 would be one of the best diagnoses to get - caught early & usually smaller ... altho being invasive (as was mine) radiation can be suggested as well .... for insurance.

 It sounds like it is near your nipple at the 2 o'clock position?  Mine was too.  My surgeon was able to do the surgery under the nipple by cutting around the nipple & doing the removal of tumour and nodes from under the skin - so I have no other cuts ..... the nipple was stitched back on (after cutting away the loose skin, tidying it up) and I have next to no scarring at all and no real loss of sensation.  (I was thinking I would come out looking like noughts & crosses!)  Our minds really play games on us & we overthink stuff, bigtime.

I think many of us have had that same question upon diagnosis ..... I know I did.  I was prepared to have a mastectomy if needed .... but my surgeon was very happy that just a lumpectomy was sufficient, with radiation as well as hormone tablets - he did a mini-reconstruct (just moved some 'fat' around) at the same time, tidying up the area so minimal scarring or indication of surgery. 

I didn't have chemo but did have radiation & it was surprisingly easy!  There is no need to be afraid of it .... Wait until you see your surgeon & dependent on their ultrasound (mine did one at my first appt)  and previous scans that he will be studying - they will help guide you in your decision making.

Some, following mastectomy, have immediate reconstruction if the surgeon is qualified to do both - others have to wait for a time, to see a plastic surgeon & then may even decide not to continue with more surgery/anaesthetic.  

It is such a very personal decision & only you can make it ..... but please have all the facts handy to you.  I am not saying this to scare you, but having a mastectomy does not necessarily prevent a recurrence.   Ask your surgeon about this. 

Take care xx. Record all your appts and if you can, take a trusted friend with you as an extra set of ears.  My sister in law was wonderful as my 'backup' .... and asked more questions than me!!

All the best with your decision making xx

Xyzabc

Thank you @arpie and all. It’s reassuring to read so many of these stories. Yes my scans all suggest that a lumpectomy would be sufficient, with only a little scarring. I’m trying to work out whether radiotherapy will be worse than the mastectomy surgery recovery, plus the additional risks of radiotherapy. And while I know the risk of recurrence isn’t eliminated with a mastectomy from here it feels like any percentage decrease is worth it. But yes this is all so new and there’s a lot of fear. What I’m struggling with is how to know what’s right for me. 

arpie

In all honesty, @Xyzabc - my own personal belief would be that mastectomy (particularly if you intend to have reconstruction at a later date) would be worse than radiotherapy - as it is much more intensive surgery & recovery, involving drains & other things.  Lumpectomy - sometimes it can just be day surgery, altho most usually stay in overnight (I did) to see the surgeon the next morning. 

What type of cancer has it been diagnosed as?  Lobular? or Ductal?  

With my surgery being around the nipple, I had my radiotherapy 'face down' (boob hanging thru a hole and targeted from underneath) so there was no chance of the radiotherapy impacting other organs ..... is yours on the right or the left boob? 

There is also the 'mental' element to mastectomy & reconstruction as well ..... not all end up as 'pretty' as hoped, I am afraid, with some having multiple surgery ... but that is the risk you have to take, with the more intensive surgery.

I can send you some pics of mine if you like (private message) so that you can see how it 'could be' with lumpectomy, as they've indicated yours will be minimal scarring .... 

We've all grappled with that question .... which ever way you go - YOU have to be happy with the decision. xx

StrongCoffee

I went for a mastectomy. I had my surgery in April. Microcalcifications on the mamogram suggested an area of around 10mm, but the MRI showed it was 35mm at it's largest. This was still fine for a lumpectomy, but if I hadn't had the MRI they would not have got clear margins.

I have anxiety and my surgeon was very supportive of my reasons for a mastectomy. As it meant I would most likely not need radiotherapy, I could have the reconstruction in the one surgery. I chose an implant for the shorter recovery/only one area to recover. If my nodes had not come back clear, I would have required radio at the risk of causing capsular contracture.

The public hospital wait was a bit longer due to getting the recon at the same time (about 4 weeks). I'm very happy with the result and have posted in the Choosing Breast Reconstruction group if you want to check it out.

I live about 75km from Melbourne, 35 minutes drive from the nearest location for radiotherapy (but 50 minutes from where I work) and I'm a primary teacher. So it's not the sort of job you can leave early, switch to flexi time, take 2 hour lunch breaks etc. Which meant radiotherapy would require multiple weeks off from work. So I took my 'weeks off' at the start to recover from surgery (7 weeks).

I was also a candidate for oncotype testing to see if chemo would be effective. It cost $3000 but, since I've no sick leave left now, paid for itself when it showed chemo would not be recommended. Mine was hormone positive and I am now on tamoxifen. I plan to stay on that for 5 years, then switch to an AI for another 5 years. I'm 46, so fairly 'young' in the BC world.

I'm very happy with my decision. I know it's what I needed to do for my anxiety.

Julez1958

Hi there
This  is such a personal decision!
in my case my first consult with my breast cancer surgeon he talked about my options of a lumpectomy or mastectomy.
At that stage it appeared I had a 4.5 cm lobular  cancer and I had big breasts ( E cup).
Further tests showed it was in fact 5.5 cm.
My surgeon still said it was my choice but if he did a lumpectomy it might not get clear margins and I might then need a mastectomy anyway.
I decided to get the mastectomy and then actually got the other one done and had DIEP flap reconstruction.
I am 63.
Even though it is an intensely personal decision your medical team can help you with the pros and cons.
For example in your case, the size of the tumour is small and now you will be part of a more intensive scanning regime so if there is another cancer in that or the other breast it should be caught early.
In my case , part of my reason in getting the double mastectomy was that my breasts were dense and my cancer was not picked up on a mammogram so I was very wary of the screening technology picking up another one.
All the best with whatever you decide.
if you go to the mastectomy route it would be worth joining the “choosing breast reconstruction” private group on here.I found it really helpful .

Julez1958

I forgot to say I had to have radiotherapy ( but not chemotherapy) due to the size of my tumour.
I had 28 sessions and sailed through it .
I used the strata xrt cream as I couldn’t have the mepital due to other issues but if you do have radiotherapy there are lots of posts on here about that.

Xyzabc

Thank you so much for sharing your experiences and thoughts. It is helpful to speak with people who are more fluent in this new language that I’m still learning, and reassuring to hear your experiences.

Cath62

Hi @Xyzabc, 

I had choice of lumpectomy or mastectomy and choose a lumpectomy. I was stage 1 but grade 3 early breast cancer. I had very big breasts and had the size of an orange cut out of me so all margins were clear. I had no lymph involvement.

 Because of the large amount removed and my big breasts I also had a lift and eventually evened up my other breast with a reduction and lift. Hey it was a bonus out of it all.

I had chemo and radium because my grade 3 cells  I didn't think radium was as bad as I expected.  I had 4 months of chemo but got through it. I did have breast cancer in my extended family but no brca gene although I didn't know about no brca gene before my surgery. My surgeon was very confident and he made me feel confident in him so I trusted the lumpectomy. 

It is all such a big decision and a very personal one too. I do think emotionally i healed well with the lumpectomy, even though it was so very hard. I don't know if my healing would be the same with a mastectomy but regardless it is such a big journey to deal with on so many levels.

  I do have big scars: one under the breast all the way across, another up to the nipple and then a 3rd all the way as round the nipple as it was moved as well. I also have the same on the other breast as I had a reduction and lift to then match up the 2 sides. The physical scars are fading. I finished my active treatment and last surgery in march this year. I am on hormone suppression, rebuilding physically and  emotionally I am healing well. 

Good luck with your decision making. I am sure you will make the right choice for you. 

Halla

Hi @Xyzabc I had a lumpectomy and radiation. The radiation is nothing to be afraid of, it doesn’t hurt at all and to be honest I found the whole ritual of going in every day, lying down and doing the deep breathing, all quite relaxing and a little bit like going in for a facial or leg waxing (but not painful). You need to moisturise your skin and it gets a bit red but no big deal.

I also struggled with the decision because I had quite a few multifocal cancers, but I am happy I still have my boob and that I didn’t have to have a huge operation that would have incapacitated me for a few months, and derailed my business. I didn’t think I would care but six months on I am glad the boobs are still there and I can feel them. Scars minimal. 

There is a 20% chance my cancer comes back, but an 80% chance it won’t so I am happy to keep an eye on it and have more ops if I am in the unlucky 20%.

The doctors say survival rates are identical for both options.

Keeping_positive1

Hi @Xyzabc sorry you find yourself here and with having to make a decision on which way to go.  I also had thought perhaps I would have them both taken off when first diagnosed, but after all the clinical staging I was given the choice that it is only necessary to have a double lumpectomy and lymph node clearance, so I went with that option. 

I also had chemo and radiotherapy, and to be honest I found the radiotherapy alright, although I was tired, (probably just cumulative from previous chemo and still having Herceptin infusions), but I got through six weeks with some burns which healed very quickly.

Whatever you choose make sure it is your decision, and not based on fear!

I agree with what @Halla says...................... The doctors say survival rates are identical for both options.

Take care and best wishes and we are here for you. xx

Kripa

Hi @Xyzabc was reading ur posts, i am also recently been diagnosed a week ago , invasive ductal carcinioma left side and 1.4mm lump. saw the surgeon yesterday and surgery scheduled for Monday. I too asked about Mastectomy, but have been advised its not needed. part of me just wants to get it done, but also part of me wants to the right thing. all happening fast around me.
i do have family history and this is estrogen and progestron positive.
what did u finally decide? would love to know if its not a problem, fine either way, 

arpie

Hi @Kripa - welcome to the club no-one wants to join .... I'm glad you've found us.  Ask away any question & we'll do our best to give you an honest answer.  That is fantastic that you've not had to wait long for your surgery!

Where abouts are you?  Town/city? If you add it to your profile, members living nearby may be able to help you with specific services that they are aware of in your area.

check out this post for lots of info on different threads on the blog that you may like to look at .... as well as down the bottom, some tips on what to take with you to hospital when you go.
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

I'll suggest to one of the moderators @Mez_BCNAso that you get your own 'thread' so you can continue to add to it, as your story progresses ...... yet you'll still able to follow the conversation on this one as well, with @Xyzabc's progress.



@Xyzabc - how are you going with your decision making?  Have you had your surgery yet? I hope you are going well xx. take care xx