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Malignant phyllodes tumours
I had a small tumour in my left breast removed by lumpectomy in 2005. I was called back 2 weeks later as the Surgeon wished to do a wide excision as they had discovered that part of the tumour was a benign Phyllodes tumour. This year it came back. It grew very rapidly and had blood filled cysts around it. I haemmorhaged 3 times when it burst through the skin before surgery could take place. I was extremely low in Haemoglobin, with a count of 4.2. I was in hospital for 4 weeks while they tried to stabilise my blood. I had 14 transfusions before they realised that every time they gave me blood, the cysts filled up and fed the tumour, and it grew even faster. In April I had the tumour removed and a mastectomy with lymph nodes removed under my arm. Again they said it was benign, but it was huge, weighing 6.2 Kilos..In June, 2 months after the mastectomy I noticed a tiny lump on one of my my ribs. At first they said it was a lymph node , then another one appeared, and they did 2 biopsies which I had to fight for. They said the Phyllodes was back but this time it is malignant. Another lump has appeared under my arm since then. I have had a CT scan which was clear apart from cysts on my ovaries which they have known about since the CT Scan I had done in February and they are not worried about..
I am due to have a bone scan on the 13th July, then start Radiotherapy. Another lump appeared in the other breast a week ago, and they did an ultrasound, but have dismissed it as a small cyst and nothing to worry about. They said that about the other lumps until I insisted on a biopsy.
If Phyllodes Tumours do not respond to radiation, why am I going to have Radiotherapy? Should I insist on a biopsy of the lump in the other breast?
This discussion is related to mullignancy.
I am due to have a bone scan on the 13th July, then start Radiotherapy. Another lump appeared in the other breast a week ago, and they did an ultrasound, but have dismissed it as a small cyst and nothing to worry about. They said that about the other lumps until I insisted on a biopsy.
If Phyllodes Tumours do not respond to radiation, why am I going to have Radiotherapy? Should I insist on a biopsy of the lump in the other breast?
This discussion is related to mullignancy.
I asked about Silver Sulphadene when the first burns appeared, and the operation scar got infected. I was told I couldn't use any cream/ointment containing metal while I am having radiotherapy as it affects the way the Xrays go into the skin, or rather get reflected back. I have been given dressings containing silver, which have managed to "suck out" one of the stitches that neither the Practice Nurse nor my Doctor could remove. I have 2 stiches left in a hole in the skin which is sore and costantly seeping, though no longer infected. 2 others remain completely covered by skin and are at present not giving any trouble. They aren't the soluble kind as the Surgeon wished them to remain in situ for at least 2 weeks. My body is trying to reject them, painfully and messily. I will have to ask one of the Doctors today if anything more can be done. By the time I got home yesterday the fresh dressing I put on after Radiotherapy was soaked through and my bra and t-shirt were wet too. The two under the skin are used by the Radiologis with my tattoos when lining up for Radiotherapy. They reckon it's a very good guide to tracking where the removed lumps were sited. Whatever floats their boat. After today it will be 9 down and possibly 6 to go. I did ask how soon after Radiotherapy will they know if it has worked or not. The answer seems to be "How long is a piece of string?". They must have some idea, but I think they are fed up with my questions. It takes 3/4 of an hour from my place to the hospital, plus anything up to 1 hour to pick up other patients. Then, after treatment I have to wait until all 4 of us finish treatment before they phone for transport.I have to be ready to be picked up at Noon so too early for lunch, and I'm lucky if I get home by 6 PM & I'm usually too tired to cook by then. My Doctor prescribed Ensure "milk shakes" to make up for vitamins and minerals I am missing. They are foul, but better than starving to death. LOL
Ask your radiologist to prescribe silver sulphadene... ok, so that may not be spelled correctly but, it works on burns beautifully and immediately.
I too am sending prayers your way dragon.
I too am sending prayers your way dragon.
I am so sorry that your troubles don't seem to be over yet and it's so sad knowing that you are enduring all this pain and suffering.:(
It's a good thing that your bone scan is clear and the lymph nodes are clear too.
I am sure that your Oncologist will give you the best advice on what to do next and will also find a remedy to deal with the nausea ,gastric problem and the cough symptom that developed during radiation.
Sending your way my prayers and most sincere best wishes...
Ps Thank you for the update.
It's a good thing that your bone scan is clear and the lymph nodes are clear too.
I am sure that your Oncologist will give you the best advice on what to do next and will also find a remedy to deal with the nausea ,gastric problem and the cough symptom that developed during radiation.
Sending your way my prayers and most sincere best wishes...
Ps Thank you for the update.
I had lumpectomies done at the Royal Marsden at Sutton on the 4th of August.My bone scan was clear. The lymph nodes they removed from under my arm were clear, just swollen as a reaction to the sarcomas. I had the tattoos done on the 6th September ready for Radiotherapy. On the 8th September at the Breast Clinic I pointed out I had 3 new lumps. The Doctor decided against more surgery as the scar after the last op is still infected. I started Radiotherapy on Tuesday 14th September. 8 doses down 7 to go. Very sore and red despite copious slaverings of moisturising cream, and the lumps started growijng again after the 3rd dose and are extremely painful. I have to see the Oncologist again on Monday as the treatment seems to be making things worse and he has to decide whether to continue Radiotherapy. I still have to have tomorrow's dose any way. I never realised just how tired and nauseous I would be, and my bowel is upset too - not to mention the sore throat caused by the cough. I am told I shouldn't have shown symptoms like these until nearing the end of the treatment. They think I am extremely sensitive to the radiation..
I am so glad that you are being proactive concerning your situation! There is nothing worse than not trusting your Surgeon(because of what she did to you) and there is nothing better than being treated by a Specialist in this field especially one who operates in this very well-known and one of the best Cancer Hospital in the world.
Hopefully this Doctor who specializes in Phyllodes tumors will do whatever is necessary to finally bring your health back.
After all these inconveniences and worries, I sure hope that everything will go smoothly from now on with your surgery and treatments.
Sincere best wishes...and please let us know how things are proceeding.
Hopefully this Doctor who specializes in Phyllodes tumors will do whatever is necessary to finally bring your health back.
After all these inconveniences and worries, I sure hope that everything will go smoothly from now on with your surgery and treatments.
Sincere best wishes...and please let us know how things are proceeding.
Nightmare 2 days. Had my tattooes done ready for the radiotherapy 12 where everyone else had 3-4.
The Dr, told me of the plans they had made for my treatment at the case conference. 1st - 3 weeks radiotherapy, then 2nd - the Surgeon said she wants to reopen the mastectomy site and remove what little flesh remains on my ribs because of the tumours and I have new tissue growth below the operation area. This is not cancerous but normal tissue. I lost 4.5 stones in 3 weeks when I was ill, and the healthy right breast shrunk to almost nothing. If you lose weight it always comes off your breasts first, not your hips Now I am a B cup instead of a C cup on the right, and that doesn't worry them so why are they worried about the .new flesh under my mastectomy? It is just regrowth of the weight I lost. Any way, the most important person was not at the case conference, Namely me.
I told him MY plans for my treatment.
1st I want to see a specialist who deals with Phyllodes tumours.
2nd I want the 3 tumours removed ASAP-by lumpectomy.
3rd radiotherapy.
This morning they held another case conference. They have agreed to what I want. I am being referred to the top specialist in Phyllodes tumours at the Royal Marsden Hospital, and hopefully he will agree to the lumpectomies followed by the radiotherapy. It's going to be my way or nothing. That female surgeon is not going to butcher me like she did with the mastectomy. It's a right mess, and as the Phyllodes returned and this time in a malignant form just 2 months after she did the mastectomy, I have no faith in her.
Today had the Isotope injection and the tube came apart, fortunately not on my clothes or they would have had to incinerate them. They decided I still had enough in my system, so 3 hours later I came back to find the scanner was broken, so I ended up standing and sitting down leaning against a plate like they used in the Dark Ages for chest Xrays. Strewth!
The Dr, told me of the plans they had made for my treatment at the case conference. 1st - 3 weeks radiotherapy, then 2nd - the Surgeon said she wants to reopen the mastectomy site and remove what little flesh remains on my ribs because of the tumours and I have new tissue growth below the operation area. This is not cancerous but normal tissue. I lost 4.5 stones in 3 weeks when I was ill, and the healthy right breast shrunk to almost nothing. If you lose weight it always comes off your breasts first, not your hips Now I am a B cup instead of a C cup on the right, and that doesn't worry them so why are they worried about the .new flesh under my mastectomy? It is just regrowth of the weight I lost. Any way, the most important person was not at the case conference, Namely me.
I told him MY plans for my treatment.
1st I want to see a specialist who deals with Phyllodes tumours.
2nd I want the 3 tumours removed ASAP-by lumpectomy.
3rd radiotherapy.
This morning they held another case conference. They have agreed to what I want. I am being referred to the top specialist in Phyllodes tumours at the Royal Marsden Hospital, and hopefully he will agree to the lumpectomies followed by the radiotherapy. It's going to be my way or nothing. That female surgeon is not going to butcher me like she did with the mastectomy. It's a right mess, and as the Phyllodes returned and this time in a malignant form just 2 months after she did the mastectomy, I have no faith in her.
Today had the Isotope injection and the tube came apart, fortunately not on my clothes or they would have had to incinerate them. They decided I still had enough in my system, so 3 hours later I came back to find the scanner was broken, so I ended up standing and sitting down leaning against a plate like they used in the Dark Ages for chest Xrays. Strewth!
Hi, I don't have breast cancer as of yet, but I have to keep being watched and tested every 6 months....I was reading where you said that where you were from..only because you sound like you are going to the same breast specialist that I go to...I am in New jersey and go to Monmouth med....the Jacquiline W breast care center?? You sound like you are having the same problem I am having....I am not sure if mine are phyllode or not but I can't get anyone to check them out again either, they just brush you off and just say they look like cysts or harmless tumors...and we'll just keep an eye on them. I have had 2 biopsies on my left breast over the past years and a lumpectomy on my right breast last year...but the more I read about phyllodes the more I am wondering if the ones I have are phyllodes....they say the look just like fibroedanoma(sp) that I have, so how can I get someone t take them more serious and biopsy them?
Good luck with your's and to all of you that are dealing with this kind of cancer..you are al in my thoughts.
Take care,
Trish
Good luck with your's and to all of you that are dealing with this kind of cancer..you are al in my thoughts.
Take care,
Trish
I was under the impression that Phyllodes tumors always have to be removed first,whether benign or malignant, and have the radiation after the surgery....
I would,if I were you, call another Hospital (Even if it's very far from where you live) so you can have a second opinion from another Oncologist,because I believe that your cousin is right, saying that the tumors have to be removed first .. as it happened to "denisegreen" (The link I gave you in my previous comment).
I really don't know what to tell you about all this, except to ASK...ASK and ASK.your Oncologist why is she advising you to have the radiation before the surgery...You have the RIGHT to know and to let her know what your cousin said concerning the radiation. I sure hope that her answer will satisfy you.
I sincerely wish you all the best...
I would,if I were you, call another Hospital (Even if it's very far from where you live) so you can have a second opinion from another Oncologist,because I believe that your cousin is right, saying that the tumors have to be removed first .. as it happened to "denisegreen" (The link I gave you in my previous comment).
I really don't know what to tell you about all this, except to ASK...ASK and ASK.your Oncologist why is she advising you to have the radiation before the surgery...You have the RIGHT to know and to let her know what your cousin said concerning the radiation. I sure hope that her answer will satisfy you.
I sincerely wish you all the best...
Thank you for your good wishes. The difference between my cousin and the local Oncologist is my cousin wants me to have the small tumours removed first then Radiotherapy, as he doesn't believe the tumours will be killed by radiation. The last one , though benign, grew to 6.2 Kilos in a matter of months. I was told a mastectomy was inevitable and the tumour wouldn't return. It has, so I have little faith in the Oncologist any more. I would rather have them removed.She was the one who said the lumps were "harmless lymph nodes playing up" and it was only when I insisted on the ultrasound and biopsies that the harmless lymph nodes turned out to be malignant tumours. The problem is that she is the only Breast Cancer specialist in the area, and deals with patients at all 3 of the nearest hospitals.
Hi again,
So, as far as I can see,radiation has been recommended by your own Oncologist and your cousin who runs a Cancer Clinic in the USA.I assume that even though Phyllodes tumor don't respond well to Radiation,there must be a reason the Oncologists recommend it.I think that it's purpose is to make sure that the cancer cells do not spread through the blood stream, chest wall and the lungs.
I hope that your radiation therapy will go smoothly and be very effective.
I am sending you my best wishes and prayers.Good luck!
So, as far as I can see,radiation has been recommended by your own Oncologist and your cousin who runs a Cancer Clinic in the USA.I assume that even though Phyllodes tumor don't respond well to Radiation,there must be a reason the Oncologists recommend it.I think that it's purpose is to make sure that the cancer cells do not spread through the blood stream, chest wall and the lungs.
I hope that your radiation therapy will go smoothly and be very effective.
I am sending you my best wishes and prayers.Good luck!
I will opt for a 2nd mastectomy if the other lump is Phyllodes. Friends who have had cancer had reconstruction straight away or soon after. I was told I had to wait at least 2 years or maybe 5 before I can consider this. I am 65 now so reconstruction at 70, if I survive that long, is too late for me. I hate the mess the surgeon made of the mastectomy. She left two large lumps of skin either side of the breast in case she had to do more surgery. It looks like I have a small boonb on either side. These hang out of my bra and swimming costume so I can no longer wear sleeveless tops or go swimming. My feet and legs are so bad after the operation I can no longer walk without a stick. Walking, swimming, and gardening were my pleasures in life. Now I can't do any of them. What price life if you have no quality of life?
My cousin runs a breast cancer clinic in the USA, and he recommends removal of the lumps then radiotherapy, though he admits Phyllodes Tumours respond to neither Radiation nor Chemo, and biopsy of the other one and mastectomy if that proves to be phyllodes. I go onn Monday to have the dots tattood on my chest, so I intend to collar the Dr. in charge of my case.
I am so sorry you are going through this. Phyllodes tumors really aren't treatable but can be removed. Honestly, I'd have the other breast removed by mastectomy too. Talk it over with your oncologist about the radiation and see why they want you to do it, what their thinking behind it is and decide for yourself.
Best wishes whichever path you choose. Please let us know how you're doing.
Best wishes whichever path you choose. Please let us know how you're doing.
Hi,
First of all I am so sorry about all the troubles you are going through..:(
I am not knowledgeable at all about Phyllodes tumor,but I've read that Oncologist do sometimes recommend radiation for this type of cancer.I don't think that Chemo would be effective though.
If the cancer is aggressive, radiation therapy could be recommended as a precaution,because it could prevent the cancer from spreading to the chest wall and lungs.
I have found a site where women who have malignant Phyllodes tumor discuss about their treatments; the post that might interest you could be the one submitted by (denisegreenPosts: 3Joined: Sep 2009) and if you are interested,just click on the link below.
http://csn.cancer.org/node/175421
If you are worried about the lump in the other breast,I think that you should insist for a biopsy,because of the bad experience you had with the first lump.
Take care and best wishes.
First of all I am so sorry about all the troubles you are going through..:(
I am not knowledgeable at all about Phyllodes tumor,but I've read that Oncologist do sometimes recommend radiation for this type of cancer.I don't think that Chemo would be effective though.
If the cancer is aggressive, radiation therapy could be recommended as a precaution,because it could prevent the cancer from spreading to the chest wall and lungs.
I have found a site where women who have malignant Phyllodes tumor discuss about their treatments; the post that might interest you could be the one submitted by (denisegreenPosts: 3Joined: Sep 2009) and if you are interested,just click on the link below.
http://csn.cancer.org/node/175421
If you are worried about the lump in the other breast,I think that you should insist for a biopsy,because of the bad experience you had with the first lump.
Take care and best wishes.
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